Journal History

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Thursday, January 23, 2003 at 02:06 PM (CST)

It is with such a warm heart that we thank you for thinking about our little Charlie Bear, once more.

Words can sometimes be so hard to find. We feel as blessed today for your support, as we did the day our poor Charlie was diagnosed. With the help of God, our families, and all of you, we can proudly say that the pain in our hearts has softened. It will always be there, but it has softened. It's true, there's a sharper pain today and there will be tomorrow, too, but we know in our hearts that it will soften again.

Because of our Charlie Bear, we are such different people than we were 18 months ago, and even than 12 months ago. We have listened and learned so much. And to our only son, we are thankful for that.

I was able to spend time with my family (the Forsbergs) this afternoon, and then spend my quality time at the Angel Park, so I'm feeling pretty good. Jeff has been walking around with a very heavy heart all week. He'll feel so much better when he gets up North. And the girls are their usual energetic selves. They're upset because they will be missing "Pajama Day" at school tomorrow, so we told them they could stay in their pjs all day if they wanted. Well, that idea has now grown into a beach party -- yep, with swimsuits and all. Joy! Don't plan on me putting pictures of that on the website! At least they are ready to celebrate Charlie, on Charlie Day.

Thank you all for the supportive cards, notes, emails, phone calls, and gifts of remembrance. They are truly heartfelt and we feel incredible joy knowing that Charlie is still in the foremost of people's minds.

He is an incredible Angel!

We are coming to visit Charlie Bear and are anxious to celebrate Charlie Day (swimsuits and all:))

Many, many, many blessings to each of you!

Kathy, Jeff, Abby, Maggie and God's special angel of hope and love Charlie Bear

Monday, January 20, 2003 at 09:48 PM (CST)

Thank you for your prayers of support.

Our week has started off very busy, which is always helpful. We are planning on heading to the cabin to be with our special little guy on Thursday night. That's when it will be the toughest.

A good friend of ours told me that she had a dream about Charlie last week. It was very, very detailed. In fact, I had to read it over and over and over again. Jeff even read it and got tears. I TRULY believe that he came to her! I think he knew he had to tell her to take care of his mommy!

She said that in her dream his hands were all sweaty and sticky, just like they always were because they were always scrunched. She said he smelled yummy, and she said she remembered holding him for a really long time and looking into those gorgeous eyes. I am still so jealous! I want a dream like that. My memories are so strong, that it seems like just yesterday that I held him. That's how I'm getting by this week.

Thank you for thinking about my little bear, and our family!

We love you Charlie Bear! And we miss you terribly! Thank you for helping us get through without you physically with us. Continue to remind us that you are always here with us -- every second, of every minute, of every day!

kathy, Jeff, Abby, Maggie and our sweet angel in heaven Charlie

Friday, January 17, 2003 at 07:41 PM (CST)

Well, a few more days have come and gone. And a few more memories.

A year ago yesterday, we lost Charlie for a short while, but he knew we needed just a little more time with him, so CPR brought him back. I remember kind of feeling guilty that he "couldn't" go because of us, but then we got that HUGE smile in the morning. The one we got every morning. He was so happy for a few days, and had lots and lots of visitors. We had more people coming to see him than ever before, so I think everyone's gut feeling was the same.

I'm still keeping a close eye on Charlie's Orchid, and taking very good care of it! I hope it blooms soon.

Thank you for your continued support and all of the prayers. They are working; we are feeling stronger about the upcoming week! We are staying home this weekend, but no plans so that usually means some family time. Which is just what we need.

Thank you also to the brightest star in the sky for being our true miracle. We love you Charlie Bear!!!!

Love,
Kathy, Jeff, Abby, Maggie and our little bear Charlie

Tuesday, January 14, 2003 at 07:17 PM (CST)

January has been a hard month!

Its been much more difficult than either Jeff or I could begin to imagine. In fact, I think we both were sad and really blue every single day last week. We decided to go up to the cabin last weekend, which seemed to really brighten our spirits. We've tried to take this as gracefully as all of the other "firsts", but that's just not happening.

Last January, Charlie was hospitalized, again, and came home, again. That went through our heads a lot. We also were remembering how many times he was coding for us, and how many times we had to resusitate him. Arghhh. All those unhappy memories just keep coming back. We were realizing, one year ago, that we were not going to have much time left with our little Bear, and actually were filling out DNR forms at the hospital. All those horrible, horrible, horrible decisions NO parent should ever have to make.

A breath of fresh air came last Thursday night as I was with my "group" of wonderful people! I was describing my feelings to my friend, Kris, and explaining that I just couldn't figure out what was striking me so differently with this first. She said it was actually very clear. All of Charlie's "firsts" were celebrations, and involved happy times and other people. These "firsts" we were going through right now were very, very sad ones. Finally a light at the end of my tunnel! She was so right. Nothing is good about these set of "firsts" we are experiencing, except the fact that we knew Charlie's pain would be ending, and soon.

Another breath of fresh air came this weekend at the cabin. Abby, my mature pumpkin, slipped a secret note into my pocket with a big grin on her face. As I read the note, I was actually confused (and not just because some words were spelled wrong). The note read, "Dear Mommy. Charlie Day is coming. Isn't it exciting? Love, Abby." Would you understand that? My babies will amaze me forever. When I asked her why she was so excited about it, she said very positively, "Because it will be one whole year that Charlie has been without machines, medicines, and hospital visits!" I try so hard not to cry at times like these, but how can I not. Do you know that sometimes I go to her for comfort??? She is such an incredible person in my life. I hope someday she reads this journal and is proud of herself, because she sure makes me proud! Maggie, on the other hand, doesn't understand the significance of "Charlie Day". She has, however, stopped a lot of her crying! Hallulah!!!!!

The biggest breath of fresh air came today, and I think this is where I got the energy to write tonight. I've got all the plants from Charlie's celebration surrounding the house. I received a beautiful Orchid from a friend, and the flower had died. Have you ever seen an Orchid without a flower? It looks similar to a Charlie Brown Christmas tree. Well, I just kept moving it and watering it. Today I glanced at it and there are 2 buds coming. I know that it is my little angel Charlie! I bet anything they will be blooming on January 24! I think that's his way of showing us new life!

I have a truly amazing family and support group. Please pray extra hard for comfort and strength for Jeff and I! It's truly much for difficult than ever imagine!

Love,
Kathy, Jeff, Abby, Maggie and my little flower Charlie

PS My little buddy Marshall has a new website. It is absolutely beautiful. Go visit! www.marshallpotter.com My goal 2003 is to get a new website for Charlie and put it on the SMA Angels website. Look for more details!

Wednesday, January 01, 2003 at 07:14 PM (CST)

Happy New Year 2003!

It's really hard to believe its been a whole nother year. Somehow, at times, this journey makes time fly.

Christmas came and went. It wasn't absolutely wonderful, but I'm happy to say that it wasn't absolutely horrible either. It just was... We handled it with grace, well, as gracefully as we possibly could.

Church was nice because the girls sang and we could smile with pride. But the end of the service was stunning. It had ended like all the others, and Jeff and I were a bit relieved because we still get so emotional at seeing all the families, children, little boys. But at the end of this Christmas service the lights went dim, and two spotlights pointed to the back of the Church. Down the aisle came Mary, Joseph and baby Jesus. Yes, a real baby. I'm sure this Church probably does this every year, but we have never seen anything quite like it before. The girls froze, I froze, and Jeff froze. The Church was in AHHH as they paraded to the manger. Then came the Wisemen and animals (these were kids), and they didn't forget the Kings bearing gifts. We proceeded to greet the pastors at the front of the church and the girls got to get a close up view of the manger scene. It was really pretty cool. Pastor Dan gave me a huge wonderful greeting and said, "this is really where it all comes together. Doesn't it?" My throat hurt so bad from fighting back the tears, all I could do was nod. How moving. Then it was on to the Forsberg celebration -- which was tons of fun.

The next day Santa came, and we piled in the car and headed to the cabin. The very first thing we always do is visit Charlie. As we approached him the girls noticed that the little Christmas tree we left him had grown. In fact, it was huge! It was so big that it was stuck in a bucket with sand so it wouldn't tip over. There were lots of footprints in the snow near Charlie, so we know he had lots of visitors! I LOVE THAT!!! (OK, our tree hadn't really grown, but Grandma and Grandpa had given Charlie his Christmas present early, his very own Christmas Tree.:) It was wonderful.)

Did I mention the gift I gave Jeff yet? I gave him a Star in the Heavens that I named "Charlie J Cowan". It's in the Little Bear (aka Ursa Minor) constellation! It came with a certificate and a map of where Charlie's star is located. It's located near where the handle and the cup meet in the Little Dipper. If there are any astronomers out there that want the exact location, please let me know! A very, very special thank you to my little angel buddy Marshall for the idea. I had done some research on naming a star for a work project, so I knew how to do it, but Marshall has his own star and that instantly triggered something. Because Grandma and Grandpa have moved part time to Arizona and are so far away from Charlie Bear and us, we gave them a copy of everything, as well. Everyone seemed to LOVE it! Now the next time we go to Jamaica and are reaching out to touch those stars, we know which one to pick!

New Year's was very quiet for us. We reflected once again on a busy, emotional year. Abby wished Charlie was back and with us, multiple times. Jeff and I told her that he was always here, just in our hearts now. I guess it was kind of a sad night. We realize we are approaching that big anniversary of his Angel Day. We are remembering all of Charlie's very "lasts". We all agreed that 2002 wasn't a horrible year. Yes, we lost our baby brother and son, but we also had a year full of MANY, MANY special family moments. Charlie has shown us in so very many ways that although he is physically not with us, he hasn't gone far. He's always watching over us. And each and every day we thank God for that!

I hope the next time you look into the sky, and see the Little Dipper, that you also see Charlie J Cowan! He's out there watching down over all of us.

Happy 2003 to each and every one of you!

Kathy, Jeff, Abby, Maggie and the brightest star in the Little Bear, Charlie

Tuesday, December 24, 2002 at 09:01 AM (CST)

Happy Holidays 2002!

Our year started out with our Charlie losing his fight with SMA. Our hearts will be broken forever, but with the loving support of our family and friends, we have continued to heal and move forward.

As I've said before, we are looking at Christmas much differently this year. The birth of Christ was never so prominent in our lives. We are thankful for this renew in Faith, and this continues to bring us encouragement for the days ahead.

Our Charlie was brought here to bring a message, and he has, and continues to touch so many, many people's lives. He will always be the brightest star in the sky. Abby thinks so too!

With happy thoughts and much love to you and your family this Holiday Season!

Kathy, Jeff, Abby, Maggie, and our Christmas Angel Charlie

PS Check back after the Holiday because I got Jeff the COOLEST gift that I will share with you! This is my best one ever......don't forget to look at the photos. They are the Santa photos from "Charlie's Christmas".

PPS Thank you so much for your warming thoughts for Marshall and his family. They continue to need those prayers!

Sunday, December 22, 2002 at 09:53 AM (CST)

With sadness, I share with you today that my little buddy Marshall earned his wings into the beautiful heavens. I have no doubt that he is with my little angel, Charlie, so that brings me comfort. Please pray for Laurie and Mark as they move forward from their tragic loss. Marshall was just 4 months old.

Marshall will be the 4th baby lost in the SMA community over the past few weeks. This is such a horrible, horrible disease that continues to rob us of our children.

In the new year, if you are searching for a cause to support, PLEASE choose SMA. There is a link at the bottom of this page that will give you further information.

We wish you good health and happiness over this holiday season!

Kathy, Jeff, Abby, Maggie and Marshall's newest buddy Charlie

Monday, December 16, 2002 at 09:55 PM (CST)

We have returned from Jamaica, Mon.

It was a very beautiful and wonderful place to be. In fact, we both agree that our stay was way too short, and that we want to do it again -- soon! The only two things I really need to note about it was that the stars there were very large, very bright, and seemed very close. It almost felt like you were in an omnitheater, or that you could really reach out and touch them. When Abby and I had a conversation about them tonight, our views differed about which one was Charlie. I naturally assumed he was the largest and most vibrant, but she assumes he is the smallest because he's just a baby. "They grow with age, you know, Mom." she said. But then I explained to her that Our Charlie Bear has a lot of people he's looking after right now, and taking care of, so he MUST be the largest to handle all that. She took a deep sigh and thought for just a moment. "Good point, Mom." she said.

The other thing about Jamaica that I wanted to share was that we met an artist that was doing pencil illustrations of people. Jeff and I both had that same idea. We went to our room, went to each of our own bags, and each brought out about 20 photos of Charlie and the girls. We looked at each other and both said, "Where'd you get all those", and both continued, "I've had them for a while and take them with me where ever I go." Funny! That's just our comfort I guess! After a short cry, we chose the best one and had an illustration of Charlie done. It turned out incredibly beautiful. I'm going to try to take a digital shot of it and stick it on here for you to see.

As you can see, our little Bear will be with us forever! Our tree is decorated, the stockings are hung, but this year Santa won't be getting out his car down the street and walking up to our house for the visit -- we're going to the Mall to visit him. I want last year's visit to be one of the absolute best memories for the girls. The one and only year Santa made house calls! Now it's back to waiting in lines with everyone else.

Jamaica let us finally take a lot of quiet time at once and think about how our life has been changing over the last year. I know I must say that all the time, but I think about it a lot. I'm still, and will always be, so greatful to God for those incredible 6 months.

Yes, we missed the girls. However, we called them every day to check how their day was, how they did on their spelling test, and what they did in PE. A HUGE thank you to our lifelong friend Melissa (I've known her since 4th grade!!!) for helping with the girls, and to Grandma Diane. The girls enjoyed the entertainment they both provided -- immensely!

And, I do want to mention that Jeff and I returned just in time to watch them sing in the choir concert at Church. Jeff and I cried through the entire thing. Christmas has such a different meaning for us this year. The songs were all about how Mary carried Jesus for 9 months, and watched over him when he was born, took care of him. Well, you know the story. It's just truly different this year!

Special Request: Extra prayers are need for my little friend Marshall, he is having a tough time today. Can you please take a minute and think about him and his family? Please pray for comfort, strength, and most of all courage for them. That will be your gift to my Charlie! He's already been called upon to watch over them!

Thanks for checking in! And we hope you are enjoying the holiday season!

Kathy, Jeff, Abby, Maggie, and the biggest brightest star in the sky Charlie Bear

Saturday, December 07, 2002 at 06:03 PM (CST)

Happy Birthday Maggie!

Can you believe it? Maggie is 6 years old today! She's such a big girl. Unfortunately, Maggie was sick yesterday, stayed home from school with the flu, so we had to cancel her family birthday party. Everyone still came up for the candlelite service at Charlie's angel park, but no one got to come over. She was so disappointed, but that's how it goes when you're sick. She's feeling much better today!

Thanksgiving was nice. Bittersweet, but nice. After we ate with the Forsberg Clan, we headed to Walker to be with our Charlie Bear. We took good care of him, and took him picks with Santa and Rudolph. We also took a little tree with ornaments, and finally we found an acrylic snowman that had wings and a halo...an ANGEL! It was the most perfect thing for him. It makes it such a nicer place to visit when it feels all warm and fuzzy. It snowed a little while we were there, so it left some white stuff on the gound. It was nice to see him for the holiday, after all, this year we were most thankful for him and what he has provided to our family! We continue to thank God for blessing us with our 6 months with our special Charlie.

The Candlelite Service was last night at his Angel Park. It was beautiful. The paths were lighted with candles, and everyone had candles and white flowers. There was soft music, and then a few people said some nice things regarding how families get through times like this because of the love and support from family, friends, communities, etc... Then they ended with a candlelit parade through the small park, that ended at the statue. It was very moving for a lot of families, ours included. Abby took a really good picture, check it out. The best part of the evening is that it was 39 degrees. It's hard to believe, I know. Once again, I gave my Charlie Bear all the credit. I know he brought warmth because he knew we were all going to be there to Honor him. Last night also marked the one year anniversary of Charlie being hospitalized, and the beginning of his health deterioration. It was a bittersweet night, but, we were feeling blue anyway, what a great way to celebrate a beautiful life -- in HIS park!


We brainstormed a lot, and as a family decided that we would sponsor a tree in Charlie's Angel Park as a gift to our family, in honor of Charlie. It's a beautiful, Ambur Maple tree that looks more like a huge bush. It turns the most beautiful shades of red and orange in the fall. The plaque has all of Charlie's grandparents, aunts, and uncles names on it! It's such a perfect gift for our first Christmas without him physically being here!

And although we are trying so hard to remember Charlie every single day, today we are remembering where we were 6 years ago. With tears, we remember the one hour labor and the words, "It's a Girl!" Maggie is having a good birthday today. She woke up to balloons all over her bed, the house decorated for a birthday, and dad making breakfast. What more could she ask for. Thankfully she was feeling better. We have let her open one present about every 5 hours, so that's been helping as well. She went with dad to get our Christmas tree, and invited her cousin Andrew over for dinner and a movie. She's in heaven!

Thanks once again for checking in on us! Jeff and I are heading on vacation soon. We're looking forward to spending time together, away, and reflecting on the past year. We'll catch up with you when we're back.

Enjoy....

Kathy, Jeff, Abby, Maggie and our special Angel Charlie

Wednesday, November 27, 2002 at 07:30 PM (CST)

Happy Thanksgiving, 2002.

I know most of you are falling over due to the fact that I'm updating Charlie's website more than once in a week, but there are feelings of Thanksgiving that I just need to get out there!

As I sit here on the eve of Thanksgiving, I'm beginning my reflection of 2001. I'm remembering that it wasn't long before Thanksgiving that I took my best picture of Charlie EVER, and I'm remembering that the weather was so nice that we put Charlie's high chair outside so he could sit and catch some rays while we worked in the yard. I'm also remembering how I felt on Thanksgiving Day when my family put together a special prayer service of Thanksgiving for the two new lives we were blessed with -- Charlie's and his cousin Katie's. And the tears roll once again. I told a friend of mine today that I'm really sick of crying. I look in the mirror and look as though I've aged 5 years, in just the one.

After this quick reflection, I started to think about all the wonderful people I'm thankful to SMA for bringing into my life -- Stacy, Lisa, Amy, and now my newest friend Laurie, to name just a few. SMA has brought all of these families dealing with this same horrible disease together in support of each other, and each others choices. SMA is a very powerful thing -- that although has kindled friendships, still needs to be destroyed.

I'm reminded quite often of those website followers that I've recently met, and also those that I've never had the chance to meet. And there is an incredible group of powerful people that I try to meet with on Thursday nights, that have held me and Charlie Bear in their hearts for such a long time. To all of you, I thank God up above for bringing you into our lives. Most importantly I'm thankful to Kris, Pastor Buendorf, and Pastor Dan for bringing God back into our lives so strongly. There's truly no other way to get through something like this.

You see, we have so much, so much, to be thankful for this Thanksgiving. God, Charlie up in heaven watching over us, Family, and Friendships are at the top of our list!

To all of you, I sincerely hope you have a wonderful Thanksgiving. I will be thanking God again, and again, and again, for each of you!

I'd like to ask for special prayers this Thanksgiving for my new friend Laurie and her baby boy, Marshall. Marshall is about 12 weeks old, and was diagnosed at 6 weeks. He is spending his very first Thanksgiving in the hospital getting his feeding tube placed. Believe me, I'm remembering that, too. Please take a minute to think of him and his family, and pray for peace and comfort for them. (and maybe a little turkey too!) A special thanks for that!

God Bless,

Kathy, Jeff, Abby, Maggie and our little turkey Charlie

Friday, November 22, 2002 at 01:54 PM (CST)

It's not worth sugar coating, we are in an emotional whirlwind these days!

As a family, we are trying to go about our usual days and keep busy, but by the end of the day we are all wiped out and all need attention. Yes, all at the same time. It's really been quite challenging to deal with. We all, also, think we need to be tended to first -- and I think that's the funny part. It's also the hardest part, because sometimes I just need time to myself, but as a mom I can't due to the girls needs. I know this sounds confusing, but you should trying living it.

Between work, school, Brownies, Daisys, dance class, pottery, church choir, etc... we are all kept quite busy, yet I'm not convinced that's really helping. We are finding a lot of comfort in the Church, and God, right now. Which is a wonderful feeling! And our friends and family are doing a very good job of keeping us out and about, and making sure we're fitting in some fun! Thank you all for that.

The Holidays are quickly approaching and we're in a tough place. I'm selfishly hoping they come and go, quietly, so we can reflect on the past year and remember our one and only Holiday season with Charlie. It's going to be so hard. But if there's one thing I've learned about grief, it's that we have to let it come and go through it. If we try to ignore it, it won't go away, it will just come back. So that is our wish for the Holiday season, that it leaves us time to remember every single minute of one year ago. We miss our Charlie so very much!!!! But we know he will be in our hearts. I can't imagine what we are going to go through as we pull out his Christmas stocking, or his special tree ornaments, yet, I'm so incredibly thankful that we have them! I know he will be with us and helping us get through this. He hasn't failed his mommy's requests yet! (Remember the sunshine on my birthday, and the special birthday photos of him?) His presence is what will truly be my only comfort for the next few weeks ahead.

Oh yeah, and the fact that I talked Jeff into taking me to Jamaica for a week in December. We are going in celebration of our anniversary, and also to try to rejuvenate and reenergize ourselves for Christmas, and then Charlie's Angel Day. We are looking so forward to spending some quality time together (without the girls)!

We'd like to invite everyone who is still following Charlie's journey to His Angel Park on Friday, Dec. 6, for the annual Candle Lite Vigil. The park is in the Maple Grove Arboretum at the intersection of County Rd 30 and Fernbrook Lane. It begins at 7pm. We hope to see you there.

In God's love,

Kathy, Jeff, Abby, Maggie and God's favorite Angel Charlie bear

Monday, November 04, 2002 at 04:35 PM (CST)

A very special thank you to everyone that has been sending special thoughts our way! It is incredibly touching that so many people continue to hold our little Charlie so close, and continue to comfort our family.


Yesterday we attended a Remembrance Service at Church. It was so beautiful and moving. We took away with us that we need to "Lite a Candle" and move on. It's been a very difficult journey for us, and we continue to battle this thing called grief, but we need to move forward. The church had a huge ladder that lined up candles and shaped a cross. Each family that honored and remembered a loved one yesterday received a candle to take home. How neat! Ours is on our mantle, and we will lite it often. The girls handled the service very well. Maggie, our emotional one that takes after her mom, cried very hard and really missed her brother. But by the end of it, she had come to terms with "liting that candle", and ran up to receive our candle for Charlie. Today in school, she started a unit about families and drew all of us. Charlie took his place in her picture, like he always does, with big wings and a halo. She is SO VERY PROUD to have him for a brother! And Abby, our mature one, was celebrating her 8th birthday prior the service, so was very proud and smilie!

The service was very powerful, and we will carry the feeling with us for a long, long time. We thank our family for joining us yesterday, and a very special thank you to Charlie's Aunt Sue. She brought a huge butterfly balloon and a huge Clifford balloon. The butterfly signifies new life (which we got attached to at the SMA benefit last summer) and the Clifford was the same one that Charlie got when he was hospitalized. He LOVED that huge red dog and stared at it all the time.

Yesterday after the service, our family went outside the church and released them in the same place that we released his other balloons. I got the same warm, fuzzy feeling that I got last January. I have absolutely no doubt in my mind that he is watching over us, and taking care of us!

Every time we lite that candle, we will think of our little bear! What an incredible journey he has taken us on.

We love you Bear! Happy Halloween! Snuggle up to Grandpa because here comes winter!

Kathy, Jeff, Abby, Maggie and our bright shining candle angel Charlie

PS We would like to give special acknowledgement to our friends Pastor Buendorf and Pastor Dan. You are two VERY special and important people to our family, and you have come into our life because of Charlie. We feel so incredibly blessed!

Thursday, October 17, 2002 at 08:59 PM (CDT)

Again, time flies, just like the snow in MN! How scary is that? It has snowed 2 or 3 times already, and Halloween isn't even here yet.

The Cowan family is doing fine. We have had an emotionally tough Fall, which was not expected. I was out of town for a few days for work, which threw my crying routine out the door. I thought that was a good thing until I got home and realized how little I thought about Charlie. I felt so guilty, that I cried and cried and cried. Then I felt better.

I was telling Jeff last week that I miss Charlie so bad right now. I thought it was because I've been so busy, but he had a different view. He felt the exact same way. We both LOVE the fall, and last fall was absolutely beautiful. Remember? It was warm until November! Then he reminded me that October was Charlie's best month ever. He was old enough to know what was going on, who people were, and how to really smile. He was eating up a storm and getting really big. We went on walks, went to visit people, and we tried so hard to have him meet so many of our friends. Then November came and he started feeling crummy. You could just tell. That was when Jeff had to start bouncing him on that stupid ball to get him to stop crying. Remember? I sure do. No one could do it like Dad. Maybe Charlie knew it was daddy's special thing? I'm not sure, but his health was never again like it was in October.

For that, we will always LOVE October. It will always bring us tears, but also wonderful, wonderful memories. Even if it does snow in stupid Minnesota!:)

We also LOVE October because we were blessed with Abby in our lives in October. She WILL be having a kid party this year, because last year she gave it up for the health of her little brother. What a great big sister. However, don't think for a minute that she ever lets us forget that, either. We'll do something extra special for her this year.

Thank you for checking in on us, and sending us your thoughts and prayers.

I wanted to invite everyone to a special Remembrance Service at Advent Lutheran Church. It will honor all the beautiful souls lost throughout the year, and will be on All Saints Day, Nov. 3, at 4pm. People have said that it's beautiful. We have submitted photos of Charlie for a video, so we know it will be meaningful. Please join us if you can!!!!

With Love,

Kathy, Jeff, Abby, Maggie, and our little fall angel baby Charlie

Wednesday, October 02, 2002 at 07:10 PM (CDT)

As part of my grieving, I continue to follow a few support websites. It mostly lets me continue to feel like part of the SMA family, so I can keep a watch over those families I've become close with. However, I continue to learn more and more about SMA each day.

Recently a few families have lost their children to SMA. I've had such a heavy heart. I can't help but feel so badly for what those families are going through right now. We have such a common bond now, even having never met. SMA took Charlie more than 8 months ago, yet it easily seems like yesterday.

Please join me in praying for all of the Families associated with SMA in any way. Even if their children have not become beautiful angels, they still are hurting each and every day.

Love,

Kathy, Jeff, Abby, Maggie, and our guardian angel Charlie

Saturday, September 21, 2002 at 10:43 AM (CDT)

Time goes so fast some times!

It just amazes me. The girls have started school, we have remembered 9/11, we have participated in a Walk for the Cure for SMA, we have gathered with friends who supported SMA through the purchase of an outing at O'Garas, and much, much more.

The girls are still excited about school, which I find great relief in. During Maggie's first week of kindergarden, her teacher asked the class to draw a house, a tree, and a person. Maggie said she proudly raised her hand and told her teacher that she was going to draw her brother, Charlie. Then Maggie said that the little girl next to her asked what the circle was on top of his head. Maggie smiled at me as she said confidently to her new friend, "That's his halo!" Oh, did I fight back the tears.

Then we have Abby (2nd grade/new teacher) who completed an assignment "All About Me" and did not mention Charlie at all. My heart just broke. I gently tried to ask her if she considered him a part of our family anymore and she said yes, very much so. She said she just sometimes forgets about him and that her teacher didn't know of him, so she didn't want to bring it up. I was so bummed out. We try so hard to talk about him all the time and keep his memory alive within our daily lives. Then she came home one day and said that they were talking about Paramedics and ambulances and that she told a few stories about how the Paramedics helped her little brother. Her teacher was able to interact with her then, and I think gave her the confidence that she needed to discuss it freely in class. The following week she had another project and the first thing she did was stick a photo of our family, including Charlie, in the center. I'm feeling much better about my little Abby now. You can be assured that her baby brother had something to do with that!!!

Jeff and I celebrated our 10-year anniversary quietly at home. We shared a bottle of our favorite wine, then shared a lot of tears as we reflected on the past 10 years. We both agreed that our biggest accomplishments, and the best days of our years together were when our children were born. Children bring such joy to the lives of families, and each one is a miracle! We continue to thank God for our families, friends, and each of our beautiful children!

One last thing. I wanted to mention that last weekend I was able to take my mom and sisters, Sue and Stella, up to Walker to visit Charlie. They had never been up there to see his stone, and it was very moving for me to share Charlie's special place with them. It was very peaceful and quiet, and the sun was shining (I won't mention the mosquitos, though). It was great telling them where all his special little "things" came from. It kind of hit me that he really has had a lot of visitors, and is staying alive in many peoples memory. Thank you to everyone who has visited him! I hope people will continue to remember him all the way up in Walker. It's truly a beautiful spot.

Until next time, please hold your families tight and remember to thank God above for what you have!

Kathy, Jeff, Abby, Maggie and our little guardian angel Charlie

Thursday, September 05, 2002 at 07:33 PM (CDT)

One year ago today, our sweet Charlie was diagnosed with SMA. Our world, as we knew it, seemed to be slowly crushing. Today we reflected on it.

We remember "knowing" something was wrong, but who could ever imagine something like this? We remember actually smiling at the neurologist as he introduced himself to us. We remember smiling at his compliments of what a beautiful baby we had. And we remember him telling us, in less than 10 minutes of examining Charlie, that he thought he was a very strong candidate for Spinal Muscular Atrophy.

We remember saying, "What is that, and what does it mean". And we remember him telling us that Charlie will probably never walk, run, or even sit up for that matter. I specifically remember asking a really stupid question, "Will he ever talk". Quite the thing for Ms. Talkative to ask...right? My thought was that if he couldn't do any of these physical things, could he still be intelligent, but it didn't come out that way.

We remember feeling numb and looking at our sweet baby wondering how could this be happening. And, as we look back, we also remember the Dr. NEVER, EVER mentioning that there was a prognosis. It wasn't until we got home and searched the internet for answers, that we found a 2-year prognosis, with most not surviving until 7 months. I remember reading it over Jeff's shoulder and falling to the ground sobbing; Jeff confirming that this was the 3rd place he had read it.

We ran to our special angel sent from God, held each other tight, then forged onward in our journey.

And what a journey it was, and continues to be.

Remembering Charlie is all that we have left. We need to remember EVERY SINGLE THING to keep him alive within us. That means the good, and the not so good.

We gave it our all, fought a good fight, made some very tough decisions, and in the end we feel VERY blessed. Some people never get to even have their babies for a minute, and we were blessed with 6 months and one week! How lucky. Our little bear is not in pain, and is now an angel among us. We can't physically hold onto Charlie, but we can sure hold onto our memories! (and his blankets, and his photos, and his stuffed animals, and his clothes; you get the idea!:))

We've said it before, but we'll say it again. Thank you for joining us on this journey. It's an awesome feeling to be loved and honored so much!

We love you Charlie! And think about you every second, of every minute, of every day!

Mommy, Daddy, Abby, Maggie, and our special angel shining down on us today, Charlie

Monday, September 02, 2002 at 09:11 PM (CDT)

Labor Day 2002!

What a much different Labor Day weekend we shared this year, compared to last year. Last year I spent a lot of time in the hospital with Charlie while they were trying to draw blood to run the millions of tests. None of these tests were for SMA though. It wasn't until the following week, when we saw the neurologist, that SMA was even in our vocabularly. So much has changed, in so little time.

The girls and I spent A LOT of quality time together last week because Jeff helped drive his mom and dad to AZ, their new winter home. For the first time since Charlie was born, Jeff was gone away from us. We girls did great! We had the girls Open House for school, which they both insisted they wear dresses to because they finally got to meet their teachers. They were very sad that dad missed it, but I also think they enjoyed the excitement of telling him over the phone. Anyway, dad got home on Friday night safe and sound, and that's all we really cared about.

We kept ourselves very busy this weekend doing things around here as a family. We went to the Gopher football game, the State Fair, and then to a cool park at their cousins. Believe it or not, we had all of our school shopping done so we didn't even have to enter a Target!

The girls are looking forward to starting school tomorrow. Abby will start 2nd grade, and Maggie will be a big Kindergardner. As I was tucking Abby in tonight, she said how different it would be from last year. She said, "Mom, this year we can walk faster because you won't have to push a stroller." I had to remind her, however, that I also will NOT be carrying all of her heavy stuff either then.:)

As always, our special little guy is NEVER far from our minds. We talk about him like he's still here, because he still is and always will be! We love you Charlie bear, and miss you terribly.

I have a HUGE surprise for all of my regulars! I FINALLY remembered to take my digital camera to Charlie's Angel Park when I was visiting last week. Take a look at the photos, they're great. I hope you can get the real sense of how intimate the park is. Charlie's brick is part of the patio that surrounds the base of the angel. Enjoy!

Always in our hearts little bear....always!

Kathy, Jeff, Abby, Maggie and our special little bear Charlie

Thursday, August 15, 2002 at 07:36 PM (CDT)

Hi Everyone.

Thanks for continuing to check in on us...as usual! We continue to have our good days and bad days...as usual! Lately, however, it seems that the good days are really good, and the bad are really bad. But the good are finally getting more frequent. So, that's good in my eyes.

It's hard to believe that it's almost been 7 months. It seems so long, but in our hearts it continues to be very short. When will that change? I still cry every single day!

Jeff and I have been doing A LOT of the "remember last year at this time", and then we both break down. It's so incredibly hard not to remember when Charlie was so new, beautiful, smelling like a baby, and not having a clue that anything was wrong. And now, we are slowly reaching that point in time when I was noticing that "something" was not right. I know we shouldn't think of that, but as time goes on we can't help ourselves but remember.

When we first visited a friend of ours (well, recent friend through SMA), they were showing us photos of their son saying, "you'll find yourself looking at photos and remembering them as "before we knew, and after we knew"". Jeff and I thought they were nuts. BUT, now I look at photos in the exact same way, "before he was diagnosed, after he was diagnosed". That's about the only way I can describe what we are going through right now.

As most people are focusing on 9/11, we are all remembering that time much different. Charlie was diagnosed just a few days before. In fact, we were still in the numb stage and 9/11 didn't sink in until much, much later. Our lives changed forever during that time, and the world tragedy seemed so distant to us. We were, and still are, dealing with our own tragedy. It's a very challenging place to be right now.

The other challenging thing we've experienced this week was that Abby, and then Maggie, have come down with virus' for the first time since we lost our little Charlie. First Abby spiked a high fever, then headaches, then upset tummy. At first I handled it like I used to, mothered her. but after we reached day 2, I started to slightly panic about West Nile, Insephilitis, etc... I took her to the doctor immediately, but it was just a virus. Now we are going through it with Maggie. So much for finally returning to work 4 days a week. I'm concerned about when school starts again. I hope I don't turn into one of those overly sanitized parents. You know who you are!!! I know a few that stalk this website!!! (secretively give me advice...please!!!)

Please continue to help us get through this rough road ahead! Then I think we will be on stable ground until the Holidays! Doesn't that sound great? The Holidays! No more HUGE milestones, just the day-to-day ones.

I need to tell you some exciting news for us, though. Jeff and I will be celebrating our 10-year wedding anniversary on Sept. 10, in the midst of all of this. We are very thankful that God has blessed us with each other, and has given us the strength to grow even closer in our relationship. Many couples fall apart at times like this, but we have flourished! We are looking forward to many, many more special anniversaries!

Thank you for your ongoing support, as always!

With love and gratitude,

Kathy, Jeff, Abby, Maggie and our special angel watching over us Charlie

Sunday, August 04, 2002 at 07:28 PM (CDT)

Charlie is Awesome!

My birthday was wonderful! The sun was shining, the humidity mysteriously was low, and there were hardly any mosquitos to be found. As people kept talking, and continue to talk, about what a beautiful day it was, I just smile and give Charlie all the credit in the world. He deserves it.

My family was great to me...all day! My massage was wonderful, but I still have a stress knot that will be tough to get out. Bummer, I guess I'll have to go back a few more times!:) Thank you to everyone for the cards, flowers, and wonderful thoughts.

The best part of the day was after my massage, I picked up some old film that I had gotten developed, but forgot about. I took the photos to the Angel Park and decided to share them with Charlie. I had no clue what they were from. The very first photo I saw was one of Charlie and Jeff, two days before he became an angel. The next one was of me with Charlie, and he was straining to look at me, not the camera.

There were only about 5 of these "never before seen" photos. Not too many, but enough for me to realize that they were the absolute best birthday present! I cried my little heart out, but I was where I needed to be. In these photos you could see in Charlie's little eyes that he was very tired, and ready to go back home to Jesus. That kind of gave me peace for the day. The rest of the day was OK after that! I was wondering what kind of a sign he would show me and I got it!

I love you my little bear!!!! Thank you for the best birthday gift in the world.

Kathy, Jeff, Abby, Maggie, and still the best birthday present Charlie

Thursday, August 01, 2002 at 08:18 PM (CDT)

Hi Everyone!

I just can't seem to find the words to say THANKS for all of your support last week. I made it through my rough spot of feeling sorry for myself, and I've been having a good week!

My birthday is tomorrow and I'm not quite sure how I'm going to feel. I know one thing for sure, I feel as though I have aged MUCH more than just one year -- unfortunately! My family is awesome, and I know they will be taking extra special care of me tomorrow. Jeff even took the WHOLE day off work. That's exactly what I need. I also am cashing in a long time gift certificate and getting a massage -- also exactly what I need. Please take a minute to think of me and say a prayer that I enjoy the day with the girls. I just hope I don't ruin it! I will be missing my very special gift, no doubt.

School is around the corner, and I'm returning to my 4-day work schedule next week. I thought I'd be dreading it, but I'm really not. The atmosphere at work is really good for me right now. A few of my very special friends have left, and YES, I cried when I had to say good bye to each of them, but hey, they left us with a lot of work which will keep us busy. So, for those special friends that regularly STALK this site, I MISS you terribly, but thanks for continuing to check in on me. Ann, Thanks for the early birthday message and good luck with the move!

Unfortunately I also lost a former coworker this week, as well. He was very young and was killed in a car accident on his way home from work. Please keep his family and friends in your thoughts too!

That's about it for this week. Thanks for sticking with us through thick and thin. We are getting through this, but it's definitely a challenge.

Charlie, I'll be looking for special Birthday signs tomorrow, and yes, mommy will come to the angel park so you can sing to me! I miss you bear!

Kathy, Jeff, Abby, Maggie, and the best birthday gift in the world Charlie

Saturday, July 27, 2002 at 02:13 PM (CDT)

Another week has passed, and another week of milestones. This week marked the 6th month anniversary of our little Charlie becoming the most precious angel in heaven!

Arghhhh! I can't wait for the time to come where we are comfortable acknowledging 6 month anniversaries, rather than monthly; and then yearly, rather than 6 months. It's so incredibly hard to not think of significant life events every 18th and 24th of each month. And it's all the more difficult to try to think of positives to keep us going, rather than "what could/should have been". Jeff has had a hard job this week of supporting me and trying to lift my spirits. I don't know if it's because I'm a mom, because I've been around so many recent births, or simply because my birthday is coming up this week, but I've been so, so sad and lonely for my sweet baby. Life sometimes just seems so unfair.

Thursday I realized that as of Friday (yesterday) our Charlie has been gone from us longer than he was with us! HOW IS THAT POSSIBLE???? It just can't be. His life was just way too short! And it seems like he has only been gone a few hours. I guess that means that I continue to have strong memories, which makes me happy and smile. It also makes the 6 months he was here seem so long, but that's because it was so challenging and stressful, which actually makes me happy that it seems like he was here longer:). Does that make sense????

That tough little guy, Charlie, has made such an impression on this world, and all in just 6 months. Even now he continues to change people's lives by being our special guardian angel! I am still hearing from people that heard us on KFAN and picked up the phone and made a pledge. Jeff and I couldn't possibly be more proud of all the support our family and friends have given to us, Charlie's family.

Even this weekend -- Frank and his family are vacationing on Leech lake and have been painting rocks as birthday presents for Charlie. They plan on visiting him many times this week. And Deb and her family are vacationing for a few days North of Brainerd, and they are planning on driving up and visiting Charlie. He truly won the hearts of everyone that ever met him.

We are so very, very proud of our son and brother. And that's how we get through each day. As Jeff was trying to comfort me, he said, "Not one second of one minute has gone by the I don't think of Charlie". And I know exactly how he feels. I'll be fine, I just cry a lot!:)

We love you Charlie Bear, and we hope you dance!

Kathy, Jeff, Abby, Maggie and the brightest angel in heaven Charlie

Sunday, July 21, 2002 at 04:24 PM (CDT)

Happy Birthday to our favorite little angel in heaven, Charlie.

We've had a very long, but wonderful week. The dinner, silent auction, and live auction went great. It was very emotional, yet very rewarding. Thank you to everyone who joined us. Looking back, we could not have made it if we didn't have such a huge supportive group. During the evening, before the live auction started, they showed a video they created with all the kids and families. I had previewed it prior, but still...when they played it you couldn't help but get emotional. THEN, when they showed a photo of Charlie all of our friends started clapping! It was so cool. What an incredible tribute to a beautiful little soul. Thank you!

The golf part of the fundraiser was on Tuesday. Jeff and I had a blast registering the celebrities. We had a collage photo of Charlie and none of them hesitated to ask about him. They all seemed genuinely touched by his short, tough life. Then Jeff joined a foursome and got to golf with Lou Nanny! He said it was a riot. A friend and I sat at hole 17 and ran a contest. It was yet another opportunity for me to tell my story. Many, many people asked about Charlie! I have never been so proud of his fight.

Jeff and I, and our families were able to meet many SMA families from MN. It truly gave us a new appreciation for the disease. I only wish Charlie would have been able to meet some of the children, as well. Seeing all of them, all different types of SMA, and all different strengths, just made me want to fight for a cure harder. In a very, very sad way, it reassured me that we did what we thought was best for our little guy. These kids live very difficult lives, but they are all thriving right now. It was so great seeing all of them so healthy.

At the golf event they had a butterfly release. Each SMA child and their family got beautiful boxes with butterflies, then we all set them free at the same time. Butterflies were everywhere. Some landed on kids, some on families, and some on Vikings!!!!:)

Because of all the festivities, I think Charlie's birthday was just a little bit easier than I had once anticipated. We had a picnic, like Abby requested. We all sang, cried for what might have been, and then Abby read him a few stories from a beautiful book about Jesus that a friend gave her. OH, the best part was as were entering the cemetary we could see from the road that Charlie had balloons. Lots and lots and lots of balloons. I guess the Florist in Walker delivers to cemetaries. It made us all smile and feel so loved and surrounded by family and friends! He is never, ever alone.

We also took flowers, balloons, and a card to the angel park before we headed to Walker. It's such a beautiful place! I'm so thankful to have something so close for me to visit.

Haven't we been busy. Thank you for all of your ongoing prayers for our bear and our family. As you can see, with your help we are making it day by day.

With love and lots and lots and lots of balloons!!!!!

Kathy, Jeff, Abby, Maggie and our birthday angel Charlie

Friday, July 12, 2002 at 03:58 PM (CDT)

It's just days before little Charlie is going to be turning one, up in heaven with all the angels. He will be with us, as always, but just not physically.

Abby came up with a great idea for her brother's birthday. She wants us to have a picnic at the cemetary. Jeff and I were thrilled at her creativity, and her enthusiasm, so that's what we are planning on doing. We are also going to be sending up lots of balloons for him and his friends to chase.

Yes, we are still trying to hold our chins up high and get through these days as gracefully as possible, which isn't always easy. God has TRULY blessed us with our incredible family and group of friends. No one could ever ask for more support than we have been given. We also have learned that we need to accept the generosity of others, in order to help our family and friends heal. It's a weird concept, but one we fully understand!

One of my very close friends offered me the gift of a personalized video for Charlie, when we lost him. The kind of video they have at weddings, that show history and have music that makes you cry. Well, I put digging through the photos and picking out songs off as long as I could, but finally decided that this would be Charlie's birthday gift! I cried so much choosing photos that I had a migrane for a week!:) Choosing the songs was almost more difficult. The video is done and we are previewing for the first time on Sunday, that way we can make any adjustments prior his birthday, which is Thursday. Wish us luck, I cry just thinking of the photos and the music together. It will be the perfect gift! Thank you, Kris! You're an awesome friend, but you already know that!:)

This weekend starts the Mike Morris Superstar Golf Classic for SMA. Tomorrow night is a dinner that includes a silent auction and live auction. Jeff was able to get the Twins to donate a few things, Grandma Diane donated something, and Carlson Wagonlit Travel donated a trip. We are attending the dinner with the girls, our family, and some close friends. We are very, very nervous and anxious all at the same time. We helped stuff bags for the golf tourney and were able to get a glimpse of the video. OH MY WORD! It was beautiful! They used a song "Angels Among Us" and the photos were so heart-wrenching. They had a few of Charlie that we submitted and I just cried (no surprise there).

Jeff and I were interviewed by KFAN (sponsors of the event) for our story. It wasn't as detailed as we had hoped, but it was one of the most challenging things we've done together in a long time. You just can't imagine how hard it is to talk about something so close to your heart knowing that it's going to be broadcast. However, we want to help the cause because it will affect US for the rest of our lives! We pray each and every day that Abby and Maggie won't be carriers of this horrible disease, but chances are very slim! We need to find that cure for their babies, and their babies, and their babies.

On Tuesday the golf tournament is at Stoneridge Golf Club, near Stillwater. Jeff and I were asked to be the SMA family to register the Celebrities. I'm nervous because I have absolutely no clue who they are, but Jeff promised me he'd take care of me. He is psyched! It's a true honor for us to have been chosen!

Tuesday is also the Radioathon on KFAN. This is where our interview will be played. Please listen if you can, and please pledge and donate for this cause! Every penny counts towards this cure! Help us fight SMA! Listen to KFAN!

We are heading up to the cabin on Wed to be with our special son and brother, and have some quality family time. We're looking forward to that, but with tons on anxiety.

Please keep us in your prayers this week. And PLEASE take a few minutes to wish Charlie a very happy birthday on Thursday! We have VERY fond memories of our life one year ago, and are focusing on those right now. That's how we plan to get through these next few days!

A special Happy Birthday to Charlie's aunt and Godmother, Mary, who is lucky enough to share the same birthday as him. We will be thinking of you, too.

Love to all,

Kathy, Jeff, Abby, Maggie and the BIRTHDAY ANGEL CHARLIE

Tuesday, July 02, 2002 at 12:26 AM (CDT)

Hmmmmm, another sleepless night. I hate nights like these. I have quite a few of them, and figure I may as well try to do something productive.

We have been having some really hard days lately, which we knew we would. We trudge through them, then get really sad thinking of the fact that we could easily feel like this for the rest of our lives. We will always be missing our Charlie....always. Life without him seems so incomplete. So many people are helping to make sure that we have strong memories and signs of him surrounding us, but yet we have to step back and just realize that he's gone and he's not coming back.

I know that he's with me all the time...really! Every time I get in one of these moods he always does something to make me smile. Here's one example. We had a garage sale and I was getting rid of most of my baby things, some of his, blah, blah, blah. I cried for weeks trying to get ready for it, I also ended up putting most of "his" things back in his dresser drawers (which are still full of his clothes and blankets, I may add). Anyway, as you can imagine I had a TERRIBLE time setting up the sale and was dredding people trying to get my precious stuff for nothing, but I needed to move forward and get rid of the stuff.

After setting up, someone had run out for food and I was sitting in the kitchen looking at a box that a new phone had come in. The phone had the Caller ID feature and on the photo of the phone on the box was the name CHARLIE, with the 555- number. Isn't that weird??? Who uses Charlie for those things? NO ONE!!! People use John Doe, not Charlie. I knew it was my little guy telling me he was there with me and that it was OK! Then we ended up with Chinese for dinner that same night and my fortune read (and I'm not kidding!) "Love does not always were a friendly face." Again, that was Charlie telling me he knew I was doing it out of love and trying to move forward.

This is truly the most difficult thing I could have ever imagined going through. Day-by-Day is all I can say. Even my good days end in tears. Some people say to me "Well it must be getting better," and look at me oddly when I say " NOPE, it hasn't". We simply have no control over it, it's in God's hands.

However, I'm certain that Charlie is with us every step of the way.

That's it.....I'll write more later. I just really needed to get some photos of my precious baby back up here where we can appreciate his beauty.

God Bless

Kathy, Jeff, Abby, Maggie and my favorite little angel Charlie

Tuesday, June 18, 2002 at 03:52 PM (CDT)

Happy 11 month Birthday Charlie!!!

Today would have marked Charlie's 11 month birthday. We continue to hold him so tightly in our hearts, and we continue to cry every single day! That's just the new normal. He was, and will forever be, a HUGE INCREDIBLE part of our lives!!! We miss him terribly!

I suppose you are all wondering what we have been up to! Many friends have been giving me grief about not updating this, but some of the truth is that I just wanted to make sure everyone got to see his beautiful marker before I replaced with new (well, old) photos. I love the marker! It's so very, very special. Jeff's poem is just incredible. I'm so glad he recommended putting it on the stone, it will be a cherished memory forever!

We have been painting some rooms in the house, painting the outside of the house, and enjoyed a family getaway with the Forsberg clan. The rooms look great, the house looks great, and the getaway was great! We all headed up the North shore to Lutsen. We rented a few townhomes and condos and got some quality time together. We did some Alpine sliding, some horseback riding, and some hiking. We try to do something together every year, but last year we missed out because it was planned right before Charlie was born, and we just knew he was going to join us sooner than his due date.

Well, this year we went, but we thought about our bear a lot. They even have a new restaurant called "Papa Charlie's"! And then, one day the kids were at arts and crafts and they made kites. That night we were on the deck and our youngest (and currently loudest) nephew Josh said (or screamed, rather) that he wanted to fly his kite up to Baby Charlie. Out of the blue! We all just simply smiled at the thought and then everyone ran to help him! It was great! Charlie is a household name, and never far from anyone's mind. It continues to touch my heart, but I know it is the reason we were blessed with him! I wouldn't have it any other way.

Jeff had a difficult, challenging, yet joyful Fathers Day. He did a lot of soul searching, yet rejoicing with the girls! He is the most wonderful dad in the whole entire world! I know Charlie takes such very special care of him!!!

I wanted to mention our new bench; the Charlie Bear Bench! Our friends from our old neighborhood grouped together and made a special place for us to go and remember our sweet Charlie! It is made of limestone, very heavy, and absolutely breathtaking. I posted a picture of it for you to see. It says "Charlie" then has artwork of a little bear! We have a paver patio just outside our picture window in the family room, and it sits near that. We use the bench often, and can see it clearly from the family room. What an incredible, thoughtful group of people! THANK YOU ALL!!!!

Our stone was place at our Angel Park, too. I haven't taken a photo of it yet, but it's GREAT! I feel like it's really our park now. We went there today and joined Charlie on his birthday. We had a quick snack with him, then headed home.

We are being kept busy with Tball, Soccer, work, household chores, but still the majority of our time is spent reflecting on our year with Charlie. It's gone just so fast. I wish I knew then, what I know now! There are some moments I would have enjoyed so much more. But all I can do is try my best to move forward.

Please continue to think of us and we enter probably the most challenging month of all!!! We will be celebrating his one year birthday somehow, that's for sure!

God bless.

Kathy, Jeff, Abby, Maggie and our little angel in heaven Charlie bear

Tuesday, May 28, 2002 at 01:50 PM (CDT)

We are back from up North, and the long weekend. For the first time since we laid Charlie to rest there, we were able to hang out with him for longer than 5 minutes. The weather was just beautiful, and the sun was shining! There is still no grass growing on his little site, but the trees are budding, and the flowers are blooming. The last time we were there we saw 3 deer running from his spot. The girls are positive that they are Charlie's friends -- Jeff and I think so too.

It was an emotional visit, they all are right now! WE miss him more and more each day. We continue to wait for it to get easier, but it just doesn't. We wish we could take him on one more walk, one more boat ride. He is always with us, we know, but obviously it just isn't the same.

His stone is set in place and is absolutely beautiful. It is exactly what we wanted. We hope you don't think it's morbid, but we stuck photos of it here so we could share it with you. I hope the photo is clear enough that you can read the poem Jeff wrote for Charlie. I still can't read it without tears, it's just so full of meaning.

Thank you, Charlie, for sending us Sun this weekend! It helped so much! It was so nice to be able to visit your site, talk to you, say a few prayers, without rushing back to the car. You can see from the photos that your sisters thought so, too.

We hope everyone had a very safe holiday. And thank you for the extra prayers for Alec and his family -- it meant a lot to me!

Love,

Kathy, Jeff, Abby, Maggie and our little angel watching over us Charlie

Sunday, May 19, 2002 at 11:45 PM (CDT)

Extra thoughts, and special prayers...

I always seem to have a lot on my mind these days, and today is no different. Since losing Charlie, I've met some very, very wonderful people but one person means more to me than anything right now. My friend Stacy lost her 7 month old son, Alec, to SMA on Dec. 30. Alec would turn one year old tomorrow. That's all that I can think about.

Stacy and I have very similar stories, and for that reason we know that our sons brought us together. Although she is from Jersey and we have never met face-to-face, we communicate at least once a week. We know exactly what each other is going through, we even find ourselves finishing each others sentences.

Alec's history with SMA was very, very similar to Charlie's -- including the long hospital stay, the episodes, and even the way he earned his wings into heaven. When we lost Charlie she was the first mom to email me and tell me how happy she was to learn that our values of Quality of life vs Quantity of life for our boys was similar. We both went through those awful decisions, but both at different times and before we knew each other. We met after all was said and done and I think that makes our bond even stronger. Although I think the clencher for me was going to Alec's webpage and meeting his sister, April. She is 6 and could so easily be my daughter. She has the brightest red hair and tons of freckles! Just a doll!

Anyway, my heart is very heavy for Stacy and her family today, so please take a moment and think of Alec celebrating his big #1 with his best bud Charlie. We will be sending a balloon up to him at the angel park! You can visit his website at www.our-sma-angels.com then go to Alec Roberts.

What else is on my mind? Well, Jeff and his buddies have a golf tournament this weekend every year. In fact, that's where Jeff and I met (but that's a different story). This year they were celebrating the 20th Annual Norton Open and part of the festivities included raising funds for the Families of SMA. I'm so very, very proud to say that that group of guys contributed around $600 for research! People are so generous it just leaves me speechless! Thank you guys!!! Charlie is up there smiling at each and every one of you.

Also weighing heavy today was that we took a huge step forward and took down Charlie's crib. I know, I know, we should have done it a long time ago, but it somehow became part of our bedroom furniture. You see, we have quite a big master bedroom and the crib just kind of melted in with everything else. I took everything down piece by piece over the past few months, but this weekend we finally took the frame down and packed it away. I replaced the empty hole with shelving from Charlie's room that holds all of his favorite things like his Pumpkin Boy, Pumpkin hat, picture frame of his birth, etc... and I think these are very fond memories. But, still it was a big step for us and we're dealing with it as best as we can.

Well, that's our quick update for you to start your week. Please remember to think about Alec and his family on Monday, and of my Charlie bear EVERYDAY....we do!

Love,

Kathy, Jeff, Abby, Maggie and our little angel in heaven Charlie

PS I forgot to mention that we are heading up to the cabin for the long weekend and his grave marker is suppose to be finished. They have put in the footings, and the stone is next. We have very mixed emotions about this. It will bring such finality, but it will make it such a more beautiful place to visit.

PPS I changed a few photos. Maggie is just too cute!

Tuesday, May 14, 2002 at 04:47 PM (CDT)

We're Home!

What a wonderful, wonderful time! Disney is so entirely full of MAGIC! We were kept so incredibly busy, that now we think we need a vacation from our vacation. Not really, but we kept moving the whole time. We did everything we could manage to squeeze in, and then more. We were to the parks by opening every day, and didn't go to bed until after the fireworks!

So, just a quick few highlights of our first vacation with the girls that was not to the cabin. They really enjoyed the plane ride. They both said they felt like angels, so you can see that Charlie was not far from all of our minds throughout this trip. Both girls get very carsick, but both made it through just fine. Lucky for dad because he was sitting with them.

We were very fortunate to stay on property at the Yacht and Beach Club, which is very close to Epcot and also to the Boardwalk, so we were within walking distance to both. The best part was that the pool was a waterpark in itself! It had a sand bottom and the girls just went nuts! We gobbed on the spf45 the entire time, and we all got just a little color -- no burns!

I think both girls would agree that the very best part was the character breakfast at Cinderellas Royal Table. This was a breakfast with ALL of the princesses and at the top of Cinderellas Castle -- which Maggie had been talking about touring forever. It was so great to see their eyes light up. All the princesses signed their autograph books, posed for photos, and then mingled around. They were so much in awe over who was coming next, that they just couldn't carry on a conversation with any of them.

Abby conquered Space Mountain 2 times! This was her very first rollercoaster, if you can believe that! My brother and his family happened to be at Disney at the same time, and this was the day we met up with him, so I think it helped that her cousins Leah and Lindsey were along for moral support! They all had a great time. Maggie seemed to like the smaller rides. Dad took her on the tea cups and said she giggled the entire time.

We all loved Fantasmic, which is a night show with lights, water, fire, etc... and very cool! We all also liked the Kilimangaro Safari ride because all of the animals were out. Abby almost touched a giraffe. We managed to roam the parks in the morning, head back for a swim early afternoon, then back to a park for dinner. We ate some very, very good food -- which was dad's favorite.

Also while we were there we took the girls to Cocoa Beach for a few hours. It was so hot that we didn't stay long, but they were speechless at the size of it. I don't think they cared for the salt water, but not many people do. We also were able to spend an evening with friends that live in the Orlando area. It was great to visit and get a great home-cooked meal.

Although we managed to keep ourselves very busy, we had our moments of memories of what might have been, as well. Jeff and I did very well as we smiled up at the heaven to our little Bear, and then rejoiced with the girls as we renewed, revitalized, and rewarded ourselves for being so strong and getting our family this far.

Mother's Day was wonderful. Jeff and the girls took very, very good care of me. We got to do whatever I wanted, and we ended with a very nice meal together. Jeff took the girls out for a little bit so I could have some quiet time -- which let me have a very long, very hard cry that I needed! I know Charlie was with me, I could tell. Oddly, I was in a gift shop and someone was yelling "Charlie". I almost fell over, thankfully it was for an old grandpa. If it were for a small little boy, I would have probably freaked!!!!:)

That's a small glimpse of our wonderful, magical journey to Disneyworld. It was truly an experience every family needs to take. A VERY SPECIAL thanks to my friend and "Disney Cast Member" Tim and his wife Galen for taking such good care of us! From the bottom of our hearts we appreciate your friendship!

Don't forget to look at the photos, and thanks for checking in on us.

Love,

Kathy, Jeff, Abby, Maggie and our little angel in heaven Charlie

PS I need to mention that Jeff did an OUTSTANDING job of enjoying himself at the parks. He was very patient with the heat, people, and especially the kiddie rides! What a trooper! Another blessing that God has sent me!

Wednesday, April 24, 2002 at 05:27 PM (CDT)

Hello everyone!

Today marks the third month that we have been without our little Charlie bear! Although three months is very long to some, it truely seems like only three days when you are missing someone so badly. We go through our moments, but continue to lean on each other for support. We are doing OK! And that's good!

Some fun news to share -- we are finally heading on vacation! In about two weeks we are heading to Disney. Yes, Disney. It has taken the girls and I about three years to talk Jeff into it, because he is just not the amusement park guy. But Jeff and I were able to experience it with my work group a few years ago, and he realized that it's so much more than rides. Sadly, it's still hard for us to have fun and not feel guilty, but we are in need of some family time and what a better place than Disney?

We are also working on helping out at the SMA golf tournament set for July. Jeff attended that most recent committee meeting and we are getting underway. Please let us know if you'd like to contribute, golf, volunteer, anything. We'd love the help.

For those of you who have asked, work is going well. I'm still working 3-day weeks, and am finding that I need that day in between to gather my thoughts and emotions. I plan on returning back to 4-day weeks, but not quite yet.

The girls continue to go about their little worlds. Maggie still has some tough moments, but we battle through them with lots of hugs and kisses. Abby is continuing to be Ms Mature (most of the time). She also has had her moments, but we battle through them, as well. A good one to share about Abby is that she had a total fit when she found out we were only going to Disney for a week! She could not understand why we couldn't go for 4 weeks! She ended up in her room for about an hour crying over it. Not quite sure where she got the idea that ANYONE went there for so long. When her fit was done, she came out feeling so terrible that she said she'd gladly go for just 2 days if that was what we decided. Now that's more like our little Abby.

Jeff and I continue to have our moments, as expected. We did have an opportunity to meet with Pastor Dan and another couple that lost their 6 month old daughter shortly before Charlie. Sarah had a totally different illness, but with very similar symptoms; all respiratorial and muscular. We shared a lot of tears and rehashed experiences. They are very strong and spiritual people and we admire them greatly.

Thank you so much for continuing to STALK Charlie's site. It brings us so much comfort to know that you are thinking of him, and us. And, yes, I like it even more when you actually sign the guest book.

We plan on getting up to Walker this weekend, before we head to Disney. We'll have to find some kind of trinket with Mickey that sticks in the ground to bring back for him.

Take care and enjoy the Spring, when it actually gets here!

Kathy, Jeff, Abby, Maggie and our little angel in heaven Charlie Bear

Tuesday, April 09, 2002 at 08:02 PM (CDT)

Happy Spring!

Finally the weather is beautiful and acting like spring. We are now waiting for rain to start getting everything green. We are also waiting for the flowers to bloom!

I'm so sorry to share with you that last week we said goodbye to yet another beautiful soul. We lost a special friend that I work with to malignant melanoma. Heidi was only 33 and had been suffering from melanoma for more than 3 years. She was truely beautiful inside and out. I feel so fortunate to have gotten to know her as well as I did, however, feel somewhat disappointed in myself that I didn't get to spend much time with her more recently. The last time I saw her was at Charlie's Celebration and she was feeling great. We cried together that day, but she was really feeling very positive about herself and was there in support of me. What a wonderful way for me to remember her!

She was such an intelligent, bright, cheerful, and friendly person. At her Celebration, one of her friends described her as having the most diverse group of friends. How true. She found something to like about absolutely everyone.

Anyway, I wanted to share a little bit about Heidi with you because I admire her for the strength and courage she showed during her entire illness. Everyone that has ever met her should be very, very proud of her.

I think losing Heidi is just another part of my grieving process. I've had to tell myself all over again that "Jesus was waiting to take her hand, and that she is at peace and in such a better place. He only takes the Best". It brings me such joy to know that Charlie will have yet another friend to comfort him!

Please say a prayer for our friend Heidi, and keep her family in your prayers, as well.

God Bless you all!

Kathy, Jeff, Abby, Maggie, and our little in heaven Charlie

Saturday, March 30, 2002 at 08:51 AM (CST)

Happy Easter!

It's hard to believe that its been 2+ months since SMA took our Charlie Bear from us. It really seems like its only been a few days. The hurt is still so painful. Some days are better, but some are worse.

We are approaching another "first" without Charlie, and we are thinking about him more and more. For some reason, I didn't think the firsts would be THIS bad because we don't have memories of Charlie with us through them in the past, but we are discovering that they are all the more difficult because he never experienced them in the first place. Rest assured, we are making sure he gets his Easter basket this year!

I need to share with you what our neighborhood has done for our family. There is a story, The Christmas Box, where a family lived with, and took care of, an elder woman who helped make them realize how important family was, and that family should always come first! Throughout the beautiful story you discover that it is because the woman lost a little baby girl. The woman visited an Angel Statue that was holding a baby angel, which was in a cemetary. The story is fictional, but everyone kept asking the author where the angel was so they could visit it. With the proceeds of this book the author created an angel. The MN Pregnancy and Infant Loss Center has purchased a replica of this angel and put it in an arboreteum in Maple Grove.

Shadow Creek, our neighborhood, has purchased a stepping stone at the foot of the angel, in honor of Charlie. It will be engraved with "Charlie J Cowan, The Eyes and Smile of an Angel". The angel is so very beautiful and it gives our family some place, closer than Walker, to go and visit our little Bear. It's close enough that in the spring and summer we could bike there.

Already, we have set off many balloons, left drawings, Valentines, beanie babies, etc... at "the angel park". That is where we will leave his Easter Basket. Every Dec. 8, at 7pm, there is a candlelit vigil in honor of all the babies in heaven. I'll let everyone know details, so you can come visit Charlie.

From the bottom of our hearts, we thank our friends at Shadow Creek for their generosity and support to our family!

I also wanted to mention that there is a Superstar Golf Tournament hosted by former MN Viking Mike Morris and the MN chapter of Families of SMA. Please let us know if you are interested in participating, volunteering, donating, etc... and I'll get information out to you. This is our way of helping to find that cure!!

Don't forget to keep the letters going to Oprah!!!! WE NEED THIS CURE!!!

Have a wonderful Easter!

Kathy, Jeff, Abby, Maggie, and our little angel in heaven Charlie Bear

Sunday, March 17, 2002 at 08:13 PM (CST)

Happy St. Patrick's Day Charlie!

We've had a very emotional and busy week, as expected. This week we said good bye to Jeff's grandma Cowan. Wanda was 97!! She led a very full, active life, however, we will miss her just the same. We were fortunate enough to visit with her a few weeks ago when she was able to recognize us, and talk with us. She had such great joy in her eyes when she saw Jeff! She grabbed his hand, squeezed it, and said how she had been praying for Charlie for such a long time. She said some very, very inspirational things to us that day! She said very matter a factly that "you must know that Charlie is in such a much better place." We simply agreed with her.

I returned to work last Monday, as promised. It was more difficult that anyone can ever imagine. I'm finding myself in many different stages of grief, all at the same time. I know I need to move forward, but all I really want to do is think about my baby boy 24/7. That puts me in an icky place right now. I work with a WONDERFUL group of people, as I said many, many times. They dusted my cube, brought in snacks and flowers, and just stopped by to give their support and remind me of how he has touched many, many lives. That's how I'm getting through.

This week also brought a CELEBRATION!!! Jeff turned 39. Yes, 39! On the Ides of March. As imagined, it was very bittersweet. We managed the best that we could, but he sadly said his one big gift was missing this year. Not a minute goes by that we don't think of Charlie!

We also met with a counselor regarding Maggie and got some great advice. Thankfully, she was pretty certain that Maggie is not acting up because she is blaming me for Charlie, but because her position in the family has just been transitioned so many times, so quickly. So we are forging forward with a solid plan for her...we'll keep you updated.

I guess that's about our week. Please continue to keep us in your prayers and we mourn and grieve for losing Gram Cowan. We were visiting her just before she went to heaven and Jeff told her to take good care of Charlie, and I told her that I was positive he would be the first to greet his great grandma. You just can't imagine the feeling of losing your son, before your grandma. Two beautiful souls.

God Bless.

Kathy, Jeff, Abby, Maggie and our little angel in heaven Charlie

PS How are those letters to Oprah coming? If you've already written, Thank You and write again. If you haven't written yet, what are you waiting for????????

Sunday, March 03, 2002 at 06:01 PM (CST)

Hello Friends.

This is just a quick update to let everyone know that we continue to do the very best that we can. We are still finding some days much, much more difficult than others. But as we've taught our girls (all too well, I might add), it's all right to cry. And we are finding ourselves doing that a little more often.

As a family, we have been working on Charlie's grave marker, and are ready to finalize the artwork. This is just one more thing that we never, ever, thought we would ever find ourselves doing. It's been an emotional project, but it will be just a beautiful way to remember him, and make his resting spot an even nicer place to visit. The stone will have the poem that Jeff wrote for Charlie engraved on the back of it. It's truely breathless. It is joined by artwork of Jesus walking with a very small boy caring a teddy bear. I still can't read that poem without tears! Jeff did such a wonderful job!

The other household event has been the decision for mom to return to work. I'm heading back March 11! I'm still not quite sure I'm ready for it, but I really need to get out of the house and interact with friends and coworkers. They've been extremely wonderful through everything, so I'm hoping to be helpful and to get through a full day without tears....we'll see. I'm starting at 3 days a week, so that will help! Maggie is VERY excited to get to daycare and play with other kids. (What does that tell you? I guess I've lost the touch for Barbies!)

Before I log off, please read the letter below. (Audrey Lewis is the Exec Director for Families of SMA) It was sent to us from the Families of SMA. If you have time PLEASE, PLEASE, PLEASE write a note to Oprah's email address! It will only take you a second. Recognition of SMA on her show would be such an incredible boost to every family that suffers from this very horrible disease. The FSMA conference is from June 21-23. Please feel free to leave Charlie's website address for them to reference! Thank you for doing your part in helping to find a cure for SMA!!!!

Love,
Kathy, Jeff, Abby, Maggie and our little angel in heaven Charlie


Here is the request:

The Tennessee Chapter would like to invite everyone to join us in a letter

writing campaign to Oprah. With the annual conference taking place in

Chicago (Oprah's city) we're trying to raise awareness by convincing Oprah

to do a show on SMA. If you participated in the recent fund raiser letter

writing campaign, rework that letter to add an Oprah twist. Some ideas

are:


Oprah's Angel Network gives money to worthy causes - Families of SMA is

a worthy cause!

Angel Network/SMA Angels - make the connection.

Nominate Audrey Lewis for Oprah's Use Your Life award, given to

individuals who have significantly changed the lives of others. Audrey

certainly qualifies. The award is $100,000!

Older kids, write your own letters. You don't have to be a poet like

Mattie Stepanek to tell your story. You're just as important.

Tell of your experiences, make it personal. If your child has a

website, include the address.


In a perfect world, Oprah would read all the letters she receives. We know

this isn't a perfect world. But, a well written letter does have a chance

of getting to her. The more letters we send, the better our odds of

reaching her.
To email a letter, go to www.oprah.com. Go to "Your Story" and click on Be

on The Oprah Winfrey Show. Then click on We Want Your Show Ideas! Fill in

the required information, then tell your story. The window they give you

to write in is pretty small, but don't let that hold you back.


Thank you in advance for your participation. Together we can make a

difference and get the national exposure we need.

Wednesday February 20, 2002 2:56 PM CST

Hi Everyone. I just thought I'd update and let you know that we are still taking our sorrow one day at a time. All the beautiful flowers from Charlie's celebration have died, the cards have started to slow down, and a lot of his things are put away or have been given away, so it's time to start finding a NEW normal for our family.

Jeff is keeping busy at work, and Abby is keeping busy with school. As for Maggie and me, well, Maggie is feeling better about preschool (she was having some sad times) and I'm finally getting to the health club, regrouping with friends, and discussing getting back to work. I'm anticipating returning within the next few weeks.

It seems our sadness is still continuing to get worse at times, but we continue to thrive on friendships and family to pull us through this. Jeff and I are attending a session at church tonight titled Grieving the Loss of a Child. We are not sure if we are quite ready for it, but we are going to give it a shot.

Thank you for checking in on us, and please keep the prayers and inspirational thoughts coming!

Love to all,

Kathy, Jeff, Abby, Maggie and our little angel Charlie

To our Bear, we are so grateful to have you as our special guardian angel watching over us. We miss you so very, very, very much, but still feel your presence with us where ever we are! We love you infinity (as Abby would say!)!

Thursday February 14, 2002 12:10 AM CST

Happy Valentine's Day our Charlie Bear! We all made Valentine's for you and taped them to heart shaped balloons. We are sending them to you tonight. We love you so!!

Here is Charlie's Valentine to all of you:

MY FIRST VALENTINE'S DAY IN HEAVEN

I see the countless Valentines sent around the world below
With tiny hearts like heaven's stars reflecting in gold.

The sight is so spectacular please wipe away the tears.
For I am spending Valentine's Day with Jesus Christ this year.

I hear the many love songs that people hold so dear
But the sounds of music can't compare with the Angel choir up here.

I have no words to tell you the joy their voices bring.
For it is beyond description to hear the Angels sing.

I know how much you miss me already. I see the pain inside your heart.
But I am not so far away, we really aren't apart.

So be happy for me, my loving family, dear ones you know I hold you dear.
And be glad I'm spending Valentine's Day with Jesus Christ this year.

I send you each a special gift, from my heavenly home above.
I send you each many memories of my undying love.

After all love is a gift more precious than pure gold. It was always most important
In all the stories Jesus told.

Please love and keep each other as our Father said to do.
For I can't count the many blessings or love he has for each & everyone of you.

So have a Happy Valentine's Day to my very special families. The Cowan's, Forsberg's, West's, Ubben's, Graff's and Sautbine's.
And wipe away your tears. For REMEMBER, I'm spending Valentine's Day with Jesus Christ this year.

Wednesday February 13, 2002 9:06 AM CST

Hi everyone.

The days are going on, and we are still taking our grief day by day. We have been finding support in so many avenues these passed weeks, but a group of Angels has really touched my heart. They are a group of moms that reach out to other moms, in a way that only moms can do! They sent me a care package, and in it was this poem that I want to share with all of you!


Losing You, My Son
Losing you, my son, has been the hardest thing that I have ever done
I cannot fall down into a pile of tears or rage at the sky
I have a family that makes me go on
and plow through the dark days
But my heart is broken into a million pieces
for all the things you could have done,
would have done, should have done
And I know that I merely shoud be grateful
for the moments that I knew you
So I will take each day and live
and be and love and dedicate it to you
I will look at the children in the park
and know that intermingled
in their laughter, there you are
I will smell the flowers and touch the grass
and leaves and trees and in my wonderment, there you are
I will know that when the wind blows through the branches
and rustles the trees and across my face, there you are
I thank you for being so strong,
because I am taking some of your strength
and I will learn to go on, for you.

by Jean G
Dedicated to Charlie



This is another one we REALLY like:
God saw he was getting tired
And a cure was not to be.
So he put His arms around him,
And whispered "Come with Me".
With tearful eyes we watched him suffer,
And saw him fade away;
Although we loved him dearly,
We could not make him stay.
A golden heart stopped beating
Hard working hands to rest.
God broke our hearts to prove to us,
He only takes the best.




God Bless
Kathy

PS the photos are just a FEW of mommy's favorites!

Saturday February 9, 2002 3:06 PM CST

Its been more than two weeks since Spinal Muscular Atrophy took Charlie from us. And its been more than two weeks since his suffering finally ended. That's what we tell ourselves to get through each day, it seems. People said the pain would get worse before it gets better, and I hate to say it, but we doubted them. They were right.

Jeff went back to work, Abby went back to school, and Maggie and I try very hard to keep ourselves busy during the days. Then when we rejoin at the end of the day, we have nice family time and continue to talk about Charlie...a lot! We miss our son and brother, but we have absolutely no doubt that he's in a much better place. We just continue to mourn and grieve for our loss. And as we thought, time is unfortuneately moving much slower than it once did.

We try very hard to soak up his all of the cherished memories by rehashing "Remember this mom?". We are starting to put some of his things away, but most them still surround us. Each of the girls has chosen a blanket of Charlie's to sleep with, which seems to bring them better days! YEAH! We love that! The picture frames that were at the church will soon hang in our hallways, so we can yet again feel his presence.

As you can see, we are doing as well as can be expected. We are still receiving many cards with wonderful, inspirational messages. And, yes, Charlie's fund is growing by leaps and bounds! People are so very generous. It really will help in finding that cure and helping all the other families affected by this horrible disease. We are honored it will be in the memory of our very special little guy and "man of the hour...Charlie".

Thank you for all of your continued thoughts, prayers, etc... AND KEEP THEM COMING!:)

God Bless

Kathy, Jeff, Abby, Maggie and God's newest angel Charlie

PS Check out the photos. Back by popular demand......

Friday February 1, 2002 8:40 PM CST

Here we find ourselves one week after our sweet Charlie became God's newest angel. We have had a very sad, quiet week mourning our loss. But words cannot describe our emotion to his Tribute and Celebration!

What a BEAUTIFUL day it was! We are truely sorry for those of you that could not join us for his Celebration. It was the most incredible Celebration we could have ever imagined. (Thank you Sue, for all of your many, many talents!)

From the balloon parade of Charlie's cousins (which I need to share with you that Abby and Maggie hand picked each balloon specifically for each cousin), to the tearful memorial letters from our families, to the spiritual eulogy from Pastor Dan, to the Childrens choir, and finally our special song by Marc Cohn with the tribute of balloons.

The last song left the most breathless vision in my mind. What a wonderful song, with the cousins and their balloons surrounding Pastor Dan and Pastor Dan, and them surrounding Charlie. It will always bring tears to my eyes. Charlie was looking down with those beautiful eyes...for sure. And then the finale of the balloon release. I noticed that some of the cousins attached letters to their balloons. Maggie said that she hoped Charlie got her balloon first, which included a picture she had drawn for him.

Monday was just as touching. Our extended families headed up to Walker, MN for Charlie's burial. Jeff had picked out Charlie's resting spot and I had never seen it until then. It is absoltely breathtaking. It is a very small and intimate cemetary in the middle of very tall and mature trees. It isn't as flat as most cemetaries, so it has some depth to it and it is surrounded by a black rod iron fence. Charlie rests next to a very old pine tree, so he will have beauty year round. He also sits perfect to watch the sunset.

As you can imagine, we visited him every day, multiple times a day. In fact, Jeff caught a horrible cold while we were there and i'm sure that's how.

We had a few very nice, quiet days at the cabin, but needed to get home to continue the mourning process. It's much more difficult than we could have ever imagined, but we are taking it day by day.

Thank you all for checking in on us and for thinking of Charlie, once more! His Celebration of Life, and all of the compassion from all of you, left our family speechless, once more. We are so very, very, very proud of our little guy and how he touched so many lives. We feel ever so confident that he is the very brightest star in the sky!

Thank you also for the many cards, plants, flowers, balloons and memorials to Charlie's fund. We are very excited to be able to make a very sizable donation to the Families of SMA in honor of our son. Like someone wrote in one of their cards, "Kick SMA's butt!". Thanks to many of you, they'll get alittle closer.

We will continue to update the site every now and then, but we will look forward to the guestbook entries! We will need your prayers for strength now more than ever.

Again, thank you so much for thinking about Charlie. He truely was a gift to be shared!

Love and comfort,

Kathy, Jeff, Abby, Maggie and our little angel Charlie

Thursday January 24, 2002 11:48 PM CST

It is with such great saddness that I write this journal entry. As I write this, our house seems so quiet. OK, I know that my family is all tucked into their beds, but still...the bi-pap isn't blowing air, the feeding bag isn't moving milk, and the 02 tank isn't hissing. You'd think I'd be getting the best night of sleep I've had in a while, but I'm not. I'm just having some nice quiet time reflecting on the day.

Charlie had just a horrible day yesterday, and the night didn't get better. He used every tiny bit of energy he had just to breathe. He slept with 02 on all night, which was a first for him, and his sats still hardly reached the low 90s (baseline for him was 97-98). Today just wasn't better.

This morning Charlie's sats were very, very low. We sat with him (yes, on my bed again), held his hand, rubbed his feet, and continued to give him meds to help relax him. Not much was working. He was suffering so. We knew the time was very close, so we just snuggled and snuggled.

Charlie knew we needed more time with him, so he left us very slowly and very silently. It really was just a miracle of God, to be quite honest. He was in his daddy's arms, with his mommy's wrapped around both of her guys. Truely...Our loss is Heaven's gain!

We are rejoicing that Charlie no longer has SMA, and is no longer fighting for every breath. That will be our comfort as we selfishly grieve and mourn. Charlie has helped us grow into such wonderful people over these past 6 months, it's hard to believe.

The girls are doing well. We got Abby from school and she knew something was wrong. When we told her that Charlie went to heaven today and that he didn't need any more machines, she got tears in her eyes but said very positively "That's a good thing, isn't it?" They both miss their brother greatly, but time will help us heal as a family.

From the bottom of my heart (and of my family's) I want to thank you all for letting me share my miracle with you. You see, since Charlie was diagnosed, we have tried to keep him healthy and away from germs so I've missed showing him off. This website was a tremendous help in letting me do just that, so thank you for returning again, and again, and again!

On behalf of Charlie and his family, we extend an invitation for you to share in a celebration of his life. Yes, there will be balloons!!!!

Visitation and Service will be held on Sunday, January 27, at Advent Lutheran Church in Maple Grove. Visitation will be held from 2-4pm, with the Service immediately following. A private burial for family members will be held in Walker, MN, near the family cabin.

Advent Lutheran Church
9475 Jefferson Hwy
Maple Grove, MN
763-425-4243
Quick Directions: 169 North, to 93rd, head West, to Jefferson Hwy, head North (Jefferson Hwy is an extension of Main Street in Osseo). There is also a MapQuest link at the bottom of this page for your convenience.


Again, God Bless you all.

Kathy, Jeff, Abby, Maggie and Charlie

PS Please feel free to continue to contribute to The Charlie Cowan Fund. We plan to make a one-time donation to the Families of SMA in memory of Charlie! This will fund research efforts for a cure for all of Charlie's little friends still fighting this disease. You can find the address under the History button at the top of this page.

Thursday January 24, 2002 1:39 PM CST

This is Charlie's dad and will be my one and only entry. We lost Charlie today at 12:42 PM. He passed in my arms with Kathy hugging us both. He no longer is suffering. Please pray for all of us as we need your support more than ever. Thank you.

We will update with funeral arrangements as soon as we know them.

Wednesday January 23, 2002 9:51 PM CST

Thank you for all of the extra prayers today!

Our little Charlie is the toughest 6-month old we know! But, unfortuneately today was another long day for him. He slept very well last night, in fact, much better than he has slept in a long, long time. But breathing just came very hard for him today. We was very agitated and very tired. We have been using Chloral Hydrate for times like these and have been giving him a half a dose, maybe 2 times a day, and today we have been giving him it every 3 hours. He woke up one time and smiled and chatted, then went back to sleep.

Jeff worked from home today, so we both were with him for the entire day. Who knows, maybe he felt like he just needed the rest and with both mom and dad catering to him, why not?

The Homecare nurse was here today checking on him and noticed that he was really having a much more difficult time breathing than in the past. He has no energy, and is losing a lot of his zest.

We are so very, very proud of our little Charlie and continue to love him with all our hearts. We are doing everything within our power to make sure he is comfortable! He has been through more in his short 6 months, than a lot of us will go through in a lifetime.

Please pray for a peaceful night, and a comfortable tomorrow.

God Bless,

Kathy, Jeff, Abby, Maggie and Charlie

Tuesday January 22, 2002 8:00 PM CST

These journal entries are seeming harder and harder to write. I think it's because Charlie has such devoted friends and followers, and that I don't always have good news.

Sadly, Charlie has not been very happy, and has been very low in energy. He has completely taken over our bedroom with all of his equipment, crib, etc... and now he has been just lounging on our bed! We are calling him the "Fat Cat" because he lays comfortably on a pillow and waits for all his aunts, uncles, grandmas, and grandpa to come along and rub his feet. Ahhhh the life.

Charlie has had a very difficult couple of days. Yesterday he coded (lost oxygen and turned blue) for me while I was alone with him. Thank God, literally, I was able to stablize him until Jeff got home. Then he continued to be agitated all night and cried. It's hard to comfort him when he's on his bi pap, but we managed to get a little sleep. Today was even rougher for him. He coded two times, and one time was when just the nurse and Grandma were here. Grandma handled it with grace, but is staying the night now.

We called our friend, Pastor Dan, over to sit with us and reenergize us. We haven't known him long, but he sure has become a very important part of our family. He gave Charlie a very special blessing, that left us somewhat calm.

Please pray extra hard for comfort for Charlie as we try to get through these spells of his. He has come back to us smiling a few times, but you can sure tell he is getting very, very tired.

God Bless.

Kathy, Jeff, Abby, Maggie and Charlie

Sunday January 20, 2002 6:49 PM CST

Sorry about the journal yesterday, we were having technical difficulty.

As you can see by the new photos, because of so many wonderful family and friends, Charlie had the most wonderful birthday. He was feeling good and we took real good care of him. Unfortuneately his sister Maggie got a bout of the flu and got sent to Aunt Sue and Uncle Mike's, so we celebrated it a few days later. She's home now and feeling better.

Have I bragged about Sue and Mike West yet? They have been so incredibly wonderful through all of our ups and downs with Charlie. They live in Maple Grove, not too far from us, and through every single emergency they have been at our door within seconds. This last episode, Mike even ran red lights to get here. We feel very proud that they hold Charlie so close to their hearts. And they take good care of us, too!

Sue and Mike are really just two of our large, no make that HUGE, network of family and friends that have sent blessings (and balloons, of course!). I'm sure you are so sick of hearing thank you, but we simply don't know how else to put it. We need all those prayers, cards, letters, flowers, etc...for strength.

Charlie has had a few very good days! It was a wonderful feeling to get through a few nights without any alarms going off. Today, however, he has seemed back to feeling icky. We're thinking that it may be the many visitors, and hoping that once get into a routine again, he'll feel better.

A home care nurse came 4 days last week. I cried the entire first day because there was so much paperwork, I didn't think there was going to ever be time for her to help with Charlie. By day 4, I was finally comfortable leaving for an hour to go run an errand. This week a different nurse will be coming for 2 days. I hope the training-in process will be quicker so I can get into a new routine. Wish me luck.

Thank you again for all that you do for us everyday! A good friend sent this to me via the guestbook and I just love it, remember:

Yesterday is the past, Tomorrow is the future, and Today is a gift, that is why it is call the Present!

It is so true!

Kathy, Jeff, Abby, Maggie and Charlie

Saturday January 19, 2002 7:37 PM CST

Thursday January 17, 2002 10:20 PM CST

YES, Charlie smiled!

That stinker woke up this morning and smiled like he always does! And as if nothing had happened last night. He is truely the most beautiful baby, and today was no exception. He had a wonderful disposition, and was very happy and cordial to visitors (which he had quite a few!). An all around good kid.

Unfortuneately he also had a few more spells, which again broke our heart to see him suffer so. His doctor came out to our house tonight to discuss Charlie's present condition and near future. We now do not think there is a way to stop these spells, as once thought. Charlie is just getting too weak and they are really taking a toll on him.

We are helping him live every day to his fullest and making sure we will have lots and lots of memories. Grandma Marlene even is threatening to put chocolate milk in his feeding bag! Way to go Grandma!

To you, our friends and family, your prayers, thoughts, and responses towards Charlie and our family leaves us speechless. Although you keep asking what you can do, just visiting his website and wanting to look at his beautiful photos tugs on our heartstrings more than you'll ever know. It's our simple way of sharing him with you!

Charlie just LOVES all of the Get Well cards Abby's first grade class made for him. Abby (aka Scotch Tape Queen) taped them all over the house so we all can enjoy them!

Tomorrow we celebrate Charlie's 6th month birthday. Jeff wants to have pizza, the girls want to watch Baby Einstein videos with him, and I'm voting for lots and lots of balloons! Please join us in celebrating by taking a moment to think about Charlie tomorrow. We want to make it just as good as today was.

Love and prayers
Kathy, Jeff, Abby, Maggie and Charlie

Wednesday January 16, 2002 11:04 PM CST

Charlie's journey continues.

Tonight Charlie had one of his spells and this was by far the most difficult one yet. He was sleeping peacefully in his wagon, and he woke up crying. His crying continued, and his breathing got much more difficult. We think we are getting pretty comfortable with our routine, and then the little boy stumps us.

It was continuing to get more and more difficult for him to breath and we felt that we were losing him, so we called 911. By the time they got here he was very blue in color. We lost him for 3 to 4 minutes, but he is such a fighter that CPR brought him back to us. He was rushed to Children's where they stablized him.

Once again we were faced with these decisions that keep haunting us. They could keep him there stablized, or we could bring him home stablized. We chose to bring him home where we can love him all we can. We are not quite sure yet what those 3 to 4 breathless minutes have done to him, but we are sure hoping for a HUGE smile in the morning.

The girls are at their cousins house for the night, but now know that Charlie someday may be an angel watching over us. It was a hard step for us to take with them, they are so little, but this is the second time in a week that an ambulance has taken their brother away. We needed them to understand the severity of it. Rest assured, they are playing games and having fun at their unexpected sleepover. After all, they are kids.:)

Jeff and I will probably not sleep a lot tonight and spend most of our time fighting over who gets to hold Charlie. We have a nurse coming tomorrow, so we can sleep then.

We just think that God really works in mysterious ways. For some reason it's just not Charlie's time! We are so very proud of our little Charlie. What a trooper. Each day he seems to fight for his life, yet always bats those baby blues with a huge smile. That's truely what gives us strength!

Keep us in your prayers for strength! And please pray for a peaceful night!

Kathy, Jeff, Abby, Maggie and Charlie

Saturday, January 12, 2002 at 08:45 PM (CST)

Hello everyone.

The results of the CT scan were NORMAL, which was very good news for Charlie. So good, in fact, that they let us come home today.

His treatment at the hosiptal was still very close to the treatment that we were giving him at home, so we even came home without any new equipment. Yeah! He did, however, come home with additional meds.

Charlie is remaining pretty comfortable at home, but is having a very difficult time swallowing. This is a very prominent part of SMA and was expected, however it's just very, very difficult for us to watch him struggle. It breaks our hearts, but our number one goal for him right now is comfort, and each day is harder for us to keep that goal.

Starting Monday, Charlie will be having a nurse caring for him at home for a few days a week. This was a very difficult and emotional decision for us to make, but we just need a little break to take care of ourselves and the girls. This will allow us time to grocery shop, clean the house, and do some laundry; all those things we used to take for granted.

Thank you for all of your support through yet another challenge in Charlie's journey. He knows you are all watching over him, and he appreciates the extra prayers for him and his family. You should see him smile!!!

Take care during this terrible flu season, but try to enjoy the weather too.

God Bless.

Kathy, Jeff, Abby, Maggie and Charlie

Friday, January 11, 2002 at 11:48 AM (CST)

Thank you for visiting today to check in on Charlie.

I wish I had some kind of update on his condition, but I really don't. He is still using blow-by oxygen, but they have decreased it and he seems to be doing ok. It goes up and down.

He continues to have a lot of "junk" in his chest, and is trying very hard to cough it up. That's hard to watch, because he has no muscle, or push, behind it.

They have taken a blood gas test, but we are waiting for results. We are hoping it will continue to be good, but you just never know.

The new thing for the day is that this morning when I got here I was looking into his big beautiful eyes, like I always do, and I noticed that one pupil was considerably larger than the other. His doctor was concerned and a CatScan is scheduled for this afternoon. Since this will be a neurological thing, he won't speculate anything.

That's just the quickie for now. We are tired, but what's new? So I just want to thank you all for praying for strength for us, and especially to Abby's teachers, right now! Thank you for going online and letting me know about Abby, and always looking out for her. She is SOOOO lucky to have you as her teacher. It's hard to keep in touch with so many people from here, so please continue to be supportive of our family's special needs right now!

God Bless!

Kathy, Jeff, Abby, Maggie and Charlie

Friday, January 11, 2002 at 11:48 AM (CST)

Thank you for visiting today to check in on Charlie.

I wish I had some kind of update on his condition, but I really don't. He is still using blow-by oxygen, but they have decreased it and he seems to be doing ok. It goes up and down.

He continues to have a lot of "junk" in his chest, and is trying very hard to cough it up. That's hard to watch, because he has no muscle, or push, behind it.

They have taken a blood gas test, but we are waiting for results. We are hoping it will continue to be good, but you just never know.

The new thing for the day is that this morning when I got here I was looking into his big beautiful eyes, like I always do, and I noticed that one pupil was considerably larger than the other. His doctor was concerned and a CatScan is scheduled for this afternoon. Since this will be a neurological thing, he won't speculate anything.

That's just the quickie for now. We are tired, but what's new? So I just want to thank you all for praying for strength for us, and especially to Abby's teachers, right now! Thank you for going online and letting me know about Abby, and always looking out for her. She is SOOOO lucky to have you as her teacher. It's hard to keep in touch with so many people from here, so please continue to be supportive of our family's special needs right now!

God Bless!

Kathy, Jeff, Abby, Maggie and Charlie

Thursday, January 10, 2002 at 10:19 AM (CST)

Hello from Children's hospital,

This is just a quicker, more specific, update from the one that was left last night (Thanks Mary!!). Charlie had one of his "spells" that we have been refering to, last night at home. During the episode we were unable to keep his oxygen sats up so he was ambulanced here to ER. With the help of blow-by oxygen, he is able to keep them up now. He has not been put on a ventiltor, but at this point does need help with oxygen.

An xray of his chest showed cloudiness over his lungs, however, his blood gas is good -- WHICH IS VERY GOOD for him. Currently they are doing everything for him that we were doing at home which includes all of his meds, nebuleizer mebs, suction, etc..., but are also giving him an antibotic through is Jtube. Thankfully, his primary pulmonologist is rounding for the next 4 days. That's very comforting for us because he knows his baseline best.

Charlie is not in the ICU, which is a positive thought for us, however, we are very concerned and need many prayers for his oxygen levels to be maintained on his own.

We will update as we can, but please just pray for comfort for him and strength for us as we travel down this road with him once again. He was smiling this morning, through all the tubes, and watching Barney comfortably.

A huge thanks to Grandma and Grandpa Cowan who just happened to be visiting when this all happened. They were able to steer the girls attention during the emergency, which was a great comfort to us.

love to all

Kathy, Jeff, Abby, Maggie and Charlie

Wednesday, January 09, 2002 at 10:24 PM (CST)

Dear Friends,
Just a short note to let you know that Charlie and his family are in need of extra prayers. Tonight Charlie was admitted to the ICU at Children’s Hospital because he was having difficulty with his breathing. They have placed him on a ventilator to stabilize his breathing and are conducting tests to identify the cause of the problem. We will update the journal when we have more information. Please keep Charlie and his family uppermost in your thoughts and prayers. Thank you for your continued love and support.

Charlie’s aunt and uncle,
Mary and Frank Forsberg

Thursday, January 03, 2002 at 05:43 PM (CST)

Happy New Year!

We rang in the new year pleasantly quiet! No trips to ER, or even to Urgent Care for that matter. We spent quite a bit of time reflecting on 2001, and how our life has changed. We realize that it has gotten much more challenging, but we also had to realize that we've met every challenge we have been faced with...so far. We are pretty proud of ourselves for that.

We feel very blessed that God has chosen us to be Charlie's family and that you all have decided to join us in his journey! We all are going to be stronger for it; we just know it. There are so many wonderful people out there, it's incredible. We are so fortunate for how you continue to support us. It just amazes us how Charlie's journey has affected so many lives. We are also pretty proud of that! He is truely a gift to be shared.

Charlie remains somewhat comfortable right now. He still continues to have a lot of secretions, but we are suctioning, suctioning, suctioning. We are also working on positioning him differently to maybe let gravity works it magic. His weight continues to go up, and then down. He is now at the weight that he went into the hospital at. He needs to start gaining, but tends to have difficulty tolerating more volume in his feedings. We are trying different things....

He is sleeping very well at night on his bi pap, and tends to take a few cat naps during the day without it. Within the next few weeks we will start giving him his naps with his bi pap as well. He has a nurse visit him every other day, and his pediatrician has come out, as well. He will be getting his 6-month shots at home this weekend. That will be weird. I think I'll need get out the camera for that one.

The girls still think their brother is pretty cool. The gap between Charlie and other babies his age is getting larger, which can be difficult for us to see. But we just focus on what Charlie can do, and rejoice at every single accomplishment he makes! The girls still jump up and down when he moves his arms!:) Abby says she still gives her class "Charlie Updates", and Maggie still picks out his clothes for him! Their favorite thing about their little brother, however, is his little red wagon! We have had more parades in the house than ever imagined! It's a fun way for them to get to play with him!

Well, we hope your reflections of 2001 were as joyous as ours, and that you all continue to pray for a CURE FOR OUR CHILDREN IN 2002!!!

Happy Thoughts!

Kathy, Jeff, Abby, Maggie and Charlie

***********************************************
If you would like to make a gift to Charlie's fund, you can do so by making a check payable to "The Charlie Cowan Fund" and sending your gift to:

The Charlie Cowan Fund
C/O Western State Bank
3033 University Avenue S.E.
Minneapolis, MN
55414

Thursday, December 27, 2001 at 07:54 PM (CST)

Hello Friends!

We sincerely hope you all had a wonderful Christmas and are looking forward to ringing in the new year!

We found ourselves in a very, very difficult situation regarding Christmas this year: taking Charlie to family festivities, or keeping him germ free at home. We finally decided that it was his Christmas too, and we would rather share him with all of his family, than just us.

We had a very nice Christmas, but unfortuneately could not avoid a trip to the ER on Christmas Eve morning. Oddly, Charlie has suddenly been having what we are calling "spells" this past week. Thankfully the first one was on Monday morning while his home care nurse was visiting. He started to cry very hard and was not able to manage his secretions so they sat in his throat and he was losing oxygen. He was losing color pretty quickly, and we tried to suction the secretions but he was so dry we couldn't get them to move, so we rushed to Childrens Hospital. They were able to stablize his oxygen there and were able to send us home...but with oxygen this time. Yet another machine.

Since then he has had two more spells. The second came yesterday morning while his doctor was visiting. He turned VERY blue, but we were able to get him stablized without taking him to ER. The last episode came last night as we were trying to get him to sleep. This one Jeff and I were able to handle on our own...thankfully!!!!! Yes, we shed a few tears along the way, but we are confident that God was helping us this time. There's no way we could be doing all this on our own!

It seems that he just gets so worked up and upset that we can't get him to stop crying and he gets clogged up. His lungs have remained clear, but the secretions just keep building up blocking his airway. We are afraid of suctioning him too much, because the more you do it the more secretions he produces. His doctor gave him a few more medications. One slightly sedates him and calms him down so he doesn't get so upset. Tonight he was starting to get upset again, so we gave him this and it put him to sleep instantly. It gave us kind of an erie feeling, but we much rather have him sleeping right now than turning blue.

We don't know if this is a virus he has caught because his secretions are oddly sticky, but we are sure hoping that this isn't a new baseline for him. A good thing is that he is finally getting back up to his pre-hospitalized weight! That's been a tough battle, as well. The doctor even called him "skinny"; nothing a doctor has EVER called one of our kids!:)

Thank you to everyone for those extra prayers; we know that's how we are able to get through this every day. We are becoming more confident with the equipment and medications each day.

Also, thanks to everyone who has brought food to us this week! What a treat to be able to sit down with the girls and try to keep some normalacy.

Keep us in your prayers!

Kathy, Jeff, Abby, Maggie and Charlie

*******************************************
If you would like to make a gift to offset medical expenses and help fund research efforts, you can do so by making a
check payable to "The Charlie Cowan Fund" and sending your gift to:

The Charlie Cowan Fund
C/O Western State Bank
3033 University Avenue S.E.
Minneapolis, MN
55414

Thursday, December 20, 2001 at 09:56 PM (CST)

It's nice to be home, but it doesn't come without its own challenges. We are managing to get through the "training in" process with all of this equipment. One nice thing is that it will FORCE us to try harder to get Charlie on a schedule. All his meds, food, and bipap are based on time and amounts. We've got charts and graphs everywhere!

Currently we have a home care nurse that has just stopped by to check on Charlie. This is a totally new nurse, so it's another new process of her learning his "baseline". This nurse will also be administering his Synagis shot, so we will be able to stop that extra visit. Also, in the future we will be (hopefully) getting a care person to watch him for a few hours, a few days a week.

Although our household has been slightly hectic with people and equipment coming and going, Jeff managed to get in a full day at work today. Something he's been trying to do for 2 weeks now, so that's a good thing. We also have had some extra special visitors (in addition to our Carlson friends bringing goodies). You'll have to check out the new photos. We all had a great time. The girls admitted that it's odd having Santa all to yourself for so long, usually you only get a few seconds with him. Charlie was fussy at first but managed to sneak in a 15 minute cat nap. When he woke, he just starred at Santa's big red suit. Abby immediately said "Charlie will love you Santa because you're full of all the colors he can see really good right now: Red, Black and White." Good girl Abby!

We are all feeling slightly rushed this holiday season, but are trying our best to slow down at those special moments and make as many memories as possible. Thank you all for helping us make that possible. The cards, prayers, thoughts and wonderful food, continue to give us strength for each new day, and we truely thank you for that!

Please forgive us if our Christmas cards are a little late this year! They will be coming sooner or later!

Please continue to keep us in your prayers -- we are needing a little extra strength to get us through the holidays!

Kathy, Jeff, Abby, Maggie and Charlie

Tuesday, December 18, 2001 at 06:39 PM (CST)

Joy To The World!

Happy 5th month birthday to Charlie, and Happy Homecoming! Its been a very, very busy day, but we are joyful to be home!

Yesterday was bittersweet. Charlie has been feeding from his "J-tube", but not his "G-tube" yet. Because they saw a trace of aspirating when they did his Upper GI test a few weeks ago, they haven't felt safe putting anything into his stomach. So, we had a Swallow Video done yesterday. That is where they take a video xray of him swallowing to see where it exactly goes. Unfortunately it got scheduled when Jeff wasn't available, so I had to see it alone. Every sip that Charlie took aspirated! They made the formula thicker and it still aspirated. A test that usually takes 45 minutes, only took 5 for Charlie. Sadly, we won't be able to feed him anything by mouth, and it's even too risky to feed through the G-tube at this point. He could easily reflux, then aspirate. Thank goodness we were being proactive and placed the J-tube when we did! He seems to be handling his own secretions currently, but we are watching him ever so closely.

The good part of the test seemed to subjectively prove that Charlie did not have RSV (which his rapid test was negative but the doctors don't quite concur) but was suffering from his own aspirations in his lungs. That brings relief to us that his Synagis shot is working, and that he did not get a virus from germs brought into the house.

Yesterday we also had a lengthy meeting with the Director of the Ethical committee at Childrens. We discussed with him all of the difficult decisions we've had to, and will have to, make. We felt very good after the meeting that we are doing the best we can for Charlie and have his, and our family's, best interests at hand.

Hence, we came home today with A LOT of new medical equipment. If you thought we knew what were talking about before, you need to come visit us now. We are all very excited about having our family complete for the holidays, and hope we can avoid the hospital for a long time. We even brought home masks and gloves!:)

I forgot to mention how great the girls are! We had a great family day at the hospital on Sunday. The girls were able to sing and read books to Charlie. When we got home, Abby told me how excited she was to get Charlie home and feed him. I reminded her that he wouldn't be able to eat from a bottle and she said she knew that and that she thought it would be "interesting to feed him through a tube", and that it was "cool that he's different"! What great kids!!!

We hope you keep healthy so you can come visit, and meet Charlie if you haven't done so yet. He is back to his adorable self!

Love to all!!!!!

Kathy, Jeff, Abby, Maggie and Charlie

Saturday, December 15, 2001 at 11:50 AM (CST)

Hi everyone!

Thanks so much for praying so hard for Charlie and for visiting to check in on him. Surgery went "normal"! Which means good in our eyes. He came out of being sedated with a big smile for mom and dad; then he drifted off to sleep for almost the entire day. I think that was his way of saying that everything was ok and for us not to worry.

To give you a little more definition of his feeding tube, they inserted a "G-tube" which will go into his stomach, but also a "J-tube" which goes through that G-tube and then directly into his intestines. We did this because in the future he may reflux from his stomach into his lungs, and the J-tube gives us another option of nutrition for him. We are trying to be proactive in the hopes of not having to put him under again..... So far today, I was able to suringe feed him through the J-tube(a whole 20ccs), and hopefully through the G-tube later today. We discussed bottle feeding him, but he is creating too many secretions and they are afraid of him aspirating them into his lungs.

In addition to the feeding tube, we have resorted to testing what is called a Bi Pap breathing machine. This is a mask with a tube that pressures positive air into his lungs. He is very young for this, but at this point it is the only option of breathing assistance we are comfortable with. We tested it last night, through the night, to see how he would tolerate it. Happily, he did a great job! They were very surprised with how well he did. I'm kind of thinking that he was just so tired he would have slept with anything on his face. One danger of this is that if he is not able to swallow (which his is progressively getting weaker) this procedure could push the secretions into his lungs. Ugh! It gets frustrating at this point....

Anyway, this morning he woke up with secretions in his chest and they are not positive if it is from the Bi Pap or not. They will be watching him closely today to see how he does.

On the home front Grandma Marlene has been staying with the girls all week and she was able to go home yesterday. What a great help. Jeff and I took turns staying at the hospital with Charlie, and getting home in time to spend dinner and night time with the girls. It's not easy running a household from a hospital room, but we all managed. We all made it to Maggie's preschool holiday celebration, which made her VERY excited. And Grandma, Grandpa, and Maggie made it to Abby's Brownie holiday celebration, which made Abby proud to show off her grandparents!

Friends and family have been doing an awesome job of checking in on us, bringing us dinner, and of course, entertainment here at the hospital! We'd go insane otherwise! We still shed tears everyday, some days more than others. But we are very pleased with the quality of care Charlie's getting! As you can imagine, we will be bringing home a lot of new equipment and will be spending the next few days learning how it all works. We are hoping to bring Charlie home by Tuesday. Keep your fingers crossed!!!!!!!

Have a good weekend, and hug those you love just a little bit tighter!

Kathy, Jeff, Abby, Maggie and Charlie

Thursday, December 13, 2001 at 10:02 PM (CST)

Hi Everyone.

Charlie is remaining pretty comfortable right now. Unfortunately he has started to lose weight again, even on a feeding device. He is just burning so many calories by breathing, it's hard to keep ahead of him. They have increased his milk ounces, so we'll see how that goes.

Please pray extra hard tonight for him; his G-tube surgery is very first thing in the morning. Although this is said to be a very non-complicated surgery, it will be his first and we are keeping him close to our hearts!

The girls got to come and visit today with grandma and grandpa. Take a look at the photos!

Thanks for the extra prayers!

Love,
Kathy, Jeff, Abby, Maggie and Charlie

Tuesday, December 11, 2001 at 09:36 PM (CST)

Hi everyone.

This has really been a very long week...already. We, again, would just like to say thanks to everyone for all those extra prayers, and also to those who have stopped by to visit, called, brought food, etc... for all of your support during this hospital stay.

Our little Charlie is hanging in there, and getting stronger. His little body is really taking a toll, however. His muscle tone is deteriorating so his chest and bell shaped ribcage are becoming more pronounced, but he sure is sucking on that pacifier!

We have scheduled his G-Tube placement surgery for Friday morning, and will be in the hospital for about 3 days after that.

We also just want to mention that today was a very emotional day for us! We had to make some very difficult decisions regarding assisted breathing for Charlie's future. Please, please pray for us and for our decision. What a horrible thing for any parent to go through. We sure love our little guy with all of our hearts -- that's for sure!

We'll keep you posted on how the surgery goes on Friday.

Please keep us in your prayers!

Kathy, Jeff, Abby, Maggie and Charlie

Sunday, December 09, 2001 at 06:38 PM (CST)

Hi everyone.

Thank you so much for all of those extra prayers right now. Really!!!

Charlie has stablized and was able to move out of PICU today and onto the floor, which is a good sign. He is able to tolerate his feedings (which is breastmilk through a feeding JTube that goes directly to his intestines) and is getting some energy back, he even smiled a few times today! Those big eyes, however, were checking out EVERYTHING all day long.

I wish I had as much good news regarding the inside of his little body. They have taken xrays everyday of his lungs, but there has been no change. They are now wondering if this is his normal "baseline" condition for this lung. Unfortunately there are no xrays of his chest prior this hospital vist, which is his first. Because of this, his respiratory system is still in danger and is working way too hard for him. We will be needing to make critical decisions regarding this within the next few days.

The first thing we are addressing is his nutrition. Because he is gaining strength, they will most likely be putting in his feeding tube during this hospital stay. We were hoping to wait until the first of the year, but currently he is not able to swallow anything, not even his saliva. And we also just don't think he will take a bottle after this. This procedure will require a few extra days at Childrens.

The other issue we will need to address shortly is what they call "suctioning", at home. That is where they stick a very fine tube in his nose, go to the back of his mouth, and down his throat and then suction out all of the secretions. This sounds, and looks, painful but it is worth it for him to be able to breath clearly. Although they say this is quite easy to do, I can tell already that this will be yet another thing that "MOM" will be doing!:)

I guess I should mention that the girls went to visit Charlie yesterday morning. They weren't there too long, and to be quite honest, they were more interested in the computer equipment than in Charlie!:) But Ronald McDonald was strolling down the hall, which was also quite entertaining!

Well, we have to get back to the hospital. Jeff and I are going to have a very frantic week trying to juggle everything, but we have lots and lots of help. We'll let any of you know what you can do to help out! Please don't worry about that, we're not shy!

Thanks again for all of your extra prayers, and please continue to think about our little Charlie.

Love,
Kathy, Jeff, Abby, Maggie and Charlie

Friday, December 07, 2001 at 07:57 PM (CST)

We are still not singing Christmas carols quite yet. Charlie was hospitalized on Thursday evening at Childrens in Minneapolis. He was having such a hard time breathing and was not eating at all. We were afraid he was going to get dehydrated, so we took him in. It kind of reminds me of that ugly gut feeling I had when I just knew he had something wrong, which ended up being SMA. Needless to say, that gut feeling made me drag Jeff to Childrens.

I'm really running on sleep depreviation, so I can't get into too much detail, but Charlie is very, very labored with his breathing. They took xrays of his chest and found something on his right lung. Because of his SMA and the odd shape of his chest, it is very difficult for the doctors to determine if it's influenza, pnemonia, slightly collapse, or just plain mucus. Because Jeff and I do not want to put his little body through too much, they are trying non-invasive measures to open it up and clear it out on his own. This will take some time because he has become so weak. We are willing to take as long as it takes and are hoping to remain strong on our previous decision of quality vs quantity of life for him.

Jeff and I just came home for a short time tonight to share Maggie's birthday with her. Jeff is going to return to Charlie tonight and I'll be heading back in the morning. Depending on how the night goes, we are planning on taking the girls to visit their little brother. We strongly feel that this is a very important family thing we need to do. Please pray extra hard that Charlie is awake and alert to greet his sisters! That will really make all the difference to them, and hopefully make it not look so overwhelming.

As usual, I've gotten way more detailed than I anticipated. I also need to get going before they eat all the birthday cake! (and don't worry about Maggie's birthday; Aunt Melissa and Aunt Sue spent a very active and special day today making Maggie feel like a queen -- Abby even skipped school and got in on the action.)

You know what you need to pray for..........

I can't express what we are going through, but we can feel the support and prayers out there! God bless you all!

Hang in there Charlie, Santa is coming to visit you!

Kathy, Jeff, Abby, Maggie and Charlie

Wednesday, December 05, 2001 at 06:58 PM (CST)

Hi everyone.

We wish we had some holiday cheer to share with all of you, but unfortunately we don't. Charlie has become sick with RSV. We tried so hard to prevent it, but we visited his pulmonologist today and he pretty much confirmed it. He said you can see the Synagis shot at work, because most children are hospitalized at this point. He also said that it will get worse before it gets better.

Currently Charlie is losing weight because he just doesn't feel like eating, and the scariest part is that he is having difficulty breathing. We are increasing his current medication, and then just loving him all we possibly can.

As you can imagine, this is just not good timing for us. With the holidays here, and Maggie's 5th birthday on Friday, we are trying very hard to keep our spirits high!

As for his G-tube, he had his Upper GI test done today and it went as expected. But the surgery will be postponed until he recovers from RSV.

Sorry this entry is so short, but I just wanted to give you a quick update on how he is doing.

All we can ask of you is to keep us in your hearts and to love your family's with all you got!

Love,
Kathy, Jeff, Abby, Maggie, and Charlie

Sunday, December 02, 2001 at 08:13 AM (CST)

Hi everyone.

We hope you had a wonderful Thanksgiving, we did. Our family did a very special blessing of Thanksgiving for our two new, recent life's: Charlie's and his cousin Katie's. It was beautiful, but of course, brought out our emotional side and the tears flowed. It was a nice way to reflect, once again, on how important our family is to us.

Our friends are very important to us, as well. We would like to graciously thank all of you who have already donated funds to the Charlie Cowan Fund. This fund was set up by our families to relieve some of the financial stress, so we can focus on Charlie's needs. With this fund, we will cover medical expenses not fully covered by insurance; ie his monthly Synagis shot to help prevent RSV. We will also cover special equipment for him; ie car seat. And we will be covering special therapy that would not only be beneficial for him, but FUN for him; ie Aquatherapy. Finally, we will be contributing a portion of it to assist in the research for finding a cure! So, thank you for your contributions and touching Charlie's life in these ways!

We have had a good week. Charlie has gained a few more ounces, which is perfect. He has, however, caught a slight cough, but his lungs have remained clear which is the important thing. Since his cough, we have really been able to notice an increase in weakness; you can hardly hear him cough or sneeze. He continues to take a bottle pretty well, but he we haven't been able to increase his feedings because he seems to get tired of sucking and swallowing. So it's still two bottles, at two different times, for each feeding.

He CONTINUES to be as cute as can be. If you don't frequently read our guestbook entries, you need to do so this time. Charlie spent a few hours with his Aunt Mary and Forsberg cousins and they made an entry detailing how they spent their quality time with him, and what they notice him doing. We feel very fortunate that his extended family can spend some time bonding with him! He loves the new faces!

Our big finding over the past weeks has been Charlie really, really finding his hands. Although he doesn't delibrately move his arms and hands to bat at toys, he moves them involuntarily and can even hold very light toys (like straws). It's amazing how hard he tries to put things in his mouth. When he makes it, which is getting more frequent, he is a total drool monster. We are even wondering if he is starting to teeth.

We are setting up our Christmas tree today and are expecting a very stimulating afternoon and evening. The girls are very excited about being our big helpers this year, and we are all looking forward to Charlie's reaction to the lights and sparkliness of the tree.

We are meeting with new GI doctors this week, so look for updates.

With love,
Kathy, Jeff, Abby, Maggie, and Charlie

PS Although I don't update the journal entry often enough for some of you, I have been updating the photos so don't forget to check them!

*******************************************
If you would like to make a gift to help offset special needs for Charlie, you can do so by making a
check payable to "The Charlie Cowan Fund" and sending your gift to:

The Charlie Cowan Fund
C/O Western State Bank
3033 University Avenue S.E.
Minneapolis, MN
55414

With love, the Forsberg and Cowan families

Wednesday, November 21, 2001 at 10:07 PM (CST)

Happy Thanksgiving!

We find ourselves in a much different emotional place this Thanksgiving. We are reflecting on a year with many, many things to be thankful for. We remind ourselves everyday how thankful we are that we have Charlie in our lives, and more importantly, two beautiful healthy daughters. We have had our many challenges, with many more ahead of us, but we are also VERY thankful for all of our family and friends, who will help us get through these times.

We've had an interesting week, once again. I've had to endure a tough lessen...every scale is different. I kind of jumped the gun in my last journal entry by celebrating Charlie's success of gaining even a little weight. When his home care nurse came the next day to weigh him, he still hadn't gain even a single ounce. We continued to bottle feed him so we could closely measure how much he was eating and have tried to get him to eat more. It's very difficult because he is a belly breather, so there's not a lot of room for eating. We feed him at two different times during one feeding so his tummy can digest some before getting the rest. Get it??? It's kind of confusing to explain, but that's what works best for him.

FINALLY, his home care nurse came again today and he has really, really, gained 5 oz. Which is great for him! Lets hope he keeps it up. Because of his disease, he can't gain too much weight because he won't move and burn off the calories like other babies, however, it does seem that he is burning a lot just by breathing.

We also visited his pediatrician this week. This is the pediatrician that cares for the girls also, and who is leaving the clinic. She has been SO wonderful to him and we are so sad to be losing her. Charlie will start seeing a new doc at the end of December. Lucky for us his old doc has given her blessing on Charlie's new doc, which brings great comfort to us.

This week also brought more sickness to the house. Abby has been fighting a tickle in her throat that got really barky sounding. They thought she had pnemonia. I was really nervous when they were taking xrays of her chest and wondering what in the world we were going to do if is was positive. That is one thing that could hospitalize Charlie if he would happen to get it. Thankfully it was negative, but it was bronchitis which isn't much better. We pretty much confined her to her room until she was on her meds long enough. Again, it's very stressful on our family when someone gets ill. It's not a fun thing!

We are all feeling much better and are looking forward to spending the holiday with the Forsberg side, which happens to be here in Maple Grove so we don't have to go too far.

Stay healthy and God bless!!

Kathy, Jeff, Abby, Maggie, and Charlie

PS Please continue to keep Charlie and our family in your prayers throughout the holiday season.

PPS We are making great strides in our quest to have as many people as we can meet Charlie. Jeff and I are really have fun seeing all of you! If you haven't met him yet, let us know.

*** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL

Dear Friends --
If you would like to make a gift to help offset expenses for Charlie's special needs, you can do so by making a
check payable to "The Charlie Cowan Fund" and sending your gift to:

The Charlie Cowan Fund
C/O Western State Bank
3033 University Avenue S.E.
Minneapolis, MN
55414

Thank you! The Forsberg and Cowan families

Monday, November 12, 2001 at 09:16 PM (CST)

Hello everyone. We hope everyone is able to get out and enjoy this oddly warm weather. We've been trying to get out as much as possible, knowing that our winter will be spent couped up inside.

We have been faced with more challenges over the past week or so. Maggie came down with the flu and spent 24+ hours in her room until we were convinced she was no longer sick. Abby had a sore throat and spent time in her room, as well. It's so stressful, but we just can't risk Charlie getting the germs. In addition to the girls getting sick, I came down with something and was put on an antibiotic that I ended up having an allergic reaction to.

All of this, and Charlie was still not gaining weight. He's been really picky about not taking a bottle and over the past week he began eating for a very short period of time, then napping, then eating, then napping. Any mom knows that a "snacker" and a "napper" is not a good combination. So we've been spending the past week monitoring his eating and sleeping and focusing on him taking a bottle. SUCCESS!!! He is now taking 2 bottles a day, in addition to nursing, and there is a much longer stretch between feedings for me!

We met with the GI doctor today and he has gained 4oz! Another SUCCESS!! Not a lot of weight, but we'll take it. Even though we are on a good working plan with his feeding, we are still going to move forward with the feeding tube. It just makes better sense for us to do it now while he is strong, then to wait until he is so sick that he needs it. We are saddened to think that it will eventually resort to that, but after the stress these past weeks with no weight gain, it will be a great relief.

We have also been blessed with some very special family and friends! Recently, Charlie's aunt Yma made a journey for him to Chimayo, New Mexico and brought back dirt from the "Church of the Holy Mud". It was a wonderful experience rubbing the dirt on him and praying for miracles. You just have to believe!!!

Charlie's aunt Mary and cousins Leah and Lindsey blessed him with Holy Water from Lourdes! It was also very spiritual and meaningful!

Friends of Charlies just returned from Ireland and lit candles at many churches for him and also brought back Holy Water from the church of Knock. Abby is learning about prayer tables in religion class and has set up one in our house for our family. We use the Holy Water during our prayer time with her!

These are just a few of the many ways everyone is helping to keep Charlie comfortable and praying for his happiness and well being. You are all so important to us and we appreciate everything you all have been doing for him and our family!

Please continue to keep Charlie and our family in your prayers!

God Bless!
Kathy, Jeff, Abby, Maggie, and Charlie

PS I still haven't heard anything from those Santas that make housecalls. There must be ONE????


SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL


Dear friends,

On behalf of Charlie and his parents, the Cowan and Forsberg families have
established a special fund in order to accept cash gifts from the many
family and friends who would love to support Charlie through this
challenging time. These funds will be used to help defray some of the many
expected and unexpected expenses Charlie is likely to incur.

If you would like to make a gift to this fund, you can do so by making a
check payable to "The Charlie Cowan Fund" and sending your gift to:

The Charlie Cowan Fund
C/O Western State Bank
3033 University Avenue S.E.
Minneapolis, MN
55414

If there are funds above and beyond Charliešs needs, Kathy and Jeff plan to
donate those dollars to SMA research. If you have any questions about this
fund, please contact Frank Forsberg at 651-645-5067, or email at
forsbergf@unitedwaytwincities.org. Thank you for your continued prayers
for Charlie and his entire family. Your love and support make all the
difference.

Sincerely,

The Cowan and Forsberg families.

Thursday, November 01, 2001 at 08:46 PM (CST)

Hello everyone! My favorite part of this website is reading the guestbook and finding old friends have signed in, or better yet, people that we've never met! I think that is so GREAT! Thank you all for thinking and praying for us.

We had a very busy week visiting doctors. First we met with the school district/early intervention and created a plan for Charlie. He will be getting physical and occupational therapy once a week, in the home. They will also be sending a Home Care nurse to the house weekly to check on his weight gain and listen to his lungs. This will give me great comfort level because he is such a noisy breather, it's hard to tell what's normal and what's not. He will also be receiving the Synagis shot (RSV prevention) at home, monthly, through February. I guess we are pretty much setting up camp here at home! I even have SimonDelivers bring groceries!

We also met a new Pediatrician this week. He specializes in children with special needs. One thing that stood out about him is his compassion. He MAKES HOUSECALLS during RSV season! Yes, he will come to our house to check in on Charlie. We feel very fortunate that he had an opening and will be able to help Charlie. In addition, we met with Charlie's pulmonist. He agrees that Charlie is not gaining any significant weight and has set us up with a GI (stomach tube) doctor within the next few weeks. He will monitor his weight and begin a plan for his tube.

It seems like things are beginning the "happen" with our little guy. We just hope they happen one at a time so we are able to make good, solid decisions about his care. Many people we have met are very impressed with our knowledge about the disease. It's one thing to read about it, but it's another to live with it. Thank you to all of you who have given us contact families! It's so helpful in our decision process.

Please pray that Charlie begins to eat better and gains weight so he can sufficiently handle the rough road ahead of him.

Love to all,

Kathy, Jeff, Abby, Maggie and Charlie

SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL *** SPECIAL ***

October 30, 2001


Dear friends,

On behalf of Charlie and his parents, the Cowan and Forsberg families have
established a special fund in order to accept cash gifts from the many
family and friends who would love to support Charlie through this
challenging time. These funds will be used to help defray some of the many
expected and unexpected expenses Charlie is likely to incur.

If you would like to make a gift to this fund, you can do so by making a
check payable to "The Charlie Cowan Fund" and sending your gift to:

The Charlie Cowan Fund
C/O Western State Bank
3033 University Avenue S.E.
Minneapolis, MN
55414

If there are funds above and beyond Charliešs needs, Kathy and Jeff plan to
donate those dollars to SMA research. If you have any questions about this
fund, please contact Frank Forsberg at 651-645-5067, or email at
forsbergf@unitedwaytwincities.org. Thank you for your continued prayers
for Charlie and his entire family. Your love and support make all the
difference.

Sincerely,

The Cowan and Forsberg families.

Thursday, November 01, 2001 at 08:19 PM (CST)

Saturday, October 27, 2001 at 04:59 AM (CDT)

Thank you very much to everyone who has been consistently visiting Charlie's website. It means so much to us that he is thought about so frequently! I promise to update the site more frequently...I just need more hours in a day.

Because Charlie seemed to have such an off week last week, we took him to have his pediatrician examine him. He actually was not labored in his breathing, which is a very good thing. We did, however, discover that he is starting to have troubles swallowing, which is a very strong sign of SMA. He is not able to fully swallow his saliva so it sits in his throat and makes a girgling sound. Some of this is also because his neck muscles are not strong so it doesn't go down his trachea easily. For now they aren't recommending suctioning this out because it's not that bad, and also because the more you suction the more his body will produce this fluid. We are learning to work with repositioning him to get him to somehow swallow. It's kind of a nasty noise, but we are used to it.

As part of the School District's program, in addition to therapies, they offer to send a Home Care nurse to the house to check on Charlie. His nurse came for the first time on Wednesday to do an accessment of his needs. We learned that he has not been gaining weight, which is NOT good, and is partly due to his weakened swallowing. Like I previously mentioned, this is one of his first important signs he is showing the disease. We had hoped that we wouldn't be faced with this until he was at least 6 months old, he is almost 15 weeks.

Because this is so common for the disease, we had already been doing a lot of research on getting Charlie a Gastrostomy Tube, or stomach tube, for feeding. This is very common with a lot children, not just children with SMA. It's a non-invasive way to get him the nutrients that he'll need and he won't have to struggle to swallow. I am still nursing Charlie and plan to continue to express so he will still be able to take advantage of all the enrichment from breast milk. What makes this decision of a GTube difficult for us, is that he is just so young for the procedure. We have been recommended to yet another new doctor who specializes in children with special needs, and we will be seeing him on Monday. We'll update you shortly after that.

Next week we are also seeing Charlie's Pulmonary Specialist and will probably start him on a respiratory procedure at night time. Look for updates for that, as well.

On the much lighter side of life at the Cowan household we wanted to share with you that Abby will be celebrating her 7th birthday on Sunday, Oct. 28. She is very excited because she has just lost her 7th tooth and she thinks that the 7-7 thing is cool. We will be taking extra time celebrating with her and reflecting on the past 7 years. We just can't believe how fast it has gone!

Maggie is doing well, but is just having a hard time staying home from daycare right now. It was a difficult decision for us, but in her best interest we are going to try putting her in daycare for 2 days a week right now. She will be able to play with friends and it will also give me 2 full days for making phone calls, doing research, and taking Charlie to appts, which has been difficult on her.

ALSO, this week Charlie welcomed a new baby cousin into the world, although he has not really met her yet.:) Kaitlyn Elizabeth Ubben joined us on Wednesday, Oct. 24! She is the baby sister to Zach and Josh, and the daughter to Deb (Kathy's sister) and Mike. We are anxious to meet her this weekend but hear she looks just like her mom with lots of dark hair! She is a tremendous blessing to our family and we will shower her with love and lots and lots of handed-down Barbies! Move over Batman!

Love to All!

Kathy, Jeff, Abby, Maggie, and Charlie

PS OK, OK, OK I'll update photos more often.

PPS Does anyone know a Santa that makes housecalls? Charlie is already looking forward to meeting him but we would like avoid the germy malls. Let us know....

Thursday, October 18, 2001 at 11:50 PM (CDT)

Boy, this has sure been a very long week for us! I think starting out our week with the visit to the specialist kind of threw us for a loop. Neither Jeff or I have been able to focus on much since. Charlie seems to have had an off week, as well. We keep telling ourselves that he is sensing our stress, but we're not sure!

After our doctor visit on Monday, we have been making new contacts from support groups. People are very willing share their experiences with us, so we've been trying to absorb and learn from them. We're just not sure that these are the paths that are meant for Charlie. There are so many decisions we need to make in the near future and we are searching for answers. Again we are digging deep, deep into our hearts to try to make the right decision for our special Charlie.

This week we have been noticing Charlie weaken slightly. His breathing seems to be slightly labored, and his sucking is not as strong as it has been. He also has been kind of fussy. He'll sleep for a short time, not his long naps. We are not doctors, so all of this could be the change in weather, or him getting a touch of something, or even somewhat normal for a 3 month old going through growth spurts. But knowing his disease, nothing goes unnoticed any more. He's a very tough kid, so hopefully we'll be able to get back into a normal routine next week.

Many of you have been asking about the girls. They are doing well. We have explained to them that Charlie is very special and that his muscles don't work, therefore he will not be able to sit, crawl, or walk. They seem to understand that one day, and then the next day they say they can't wait for him to play in the sand box with them. They are still trying to get used to being big sisters, and are very helpful to mom and dad. They pray for Charlie every night and smoother him with lots of kisses!

Jeff and I are doing well, too. Our marriage has only gotten stronger. We have learned to support each others needs and wants, as well as ideas. It's been hard for me to instantly turn into a "stay at home" mom. I would have been returning to work this week, and greatly miss my job and my friends. They have been very supportive in offering me this personal leave, and have been checking in on me!!!!

Please pray for Charlie to regain his strength, and to stay healthy. And please, please pray that we are able to make the right decisions for him and our family. We truely love this little guy with all our hearts and only want the best life possible for him!

Love in Christ!

Kathy, Jeff, Abby, Maggie and Charlie

Monday, October 15, 2001 at 06:25 PM (CDT)

Today we visited another new doctor at Gillette. This doctor is very well known in the field for researching SMA. Unfortunately he is reasearching Type II, while Charlie has Type I. But, we were able to get Charlie in to see him regardless. Even though we have been dealing with Charlie's prognosis for about 6 weeks, it just isn't getting any easier hearing the doctors say there is nothing we can do; and coming from a well-known expert, today seemed all the more difficult.

He examined our little guy and detailed all the symptoms that we already knew, then he agreed with us that he really is a beautiful little boy! For everyone that has not yet met him, he really is quite charming. We discussed Charlie's future and just brushed on all the difficult decisions we, as a family, will have to make in the months to come. It really is going to be a matter of Quality vs. Quantity. The doctor said to give him all the love we can, and to give the girls even more! We told him we were already doing that!!!!:)

To make Charlie comfortable, we have been making strides on getting him physical and occupational therapy and will be putting a plan together next week. He also has been fortunate to be part of a program where he is able to get a Synagis shot to help prevent RSV. Other than that, it's just love, love, and more love. We are hoping the change of seasons will be good to him.

Before we sign off we just wanted to mention how grateful we are to have so many people out there praying for us. This is truely the most difficult thing any of us has EVER gone through. Checking the website and seeing all of your inspirationsl words really strengthens us. It seems odd, but at least we know someone was thinking of us today!

Please keep Charlie and our family in your prayers today and every day. And if you haven't met him yet, let us know!

All of our love,

Kathy, Jeff, Abby, Maggie and Charlie

PS We'll try to update the photos more frequently, but these are really just too cute to change!

Tuesday, October 09, 2001 at 07:18 AM (CDT)

On Sept. 5 Charlie was diagnosed with SMA, which changed our lives forever. And on Sept. 17 all tests were conclusive, which made the terrible nightmare a reality. We cried and cried and cried. Then we researched the internet to find out more about this horrible disease and learned that it's the Number One killer of children under the age of TWO. We didn't know if this nightmare was ever going to end. Nothing about this disease is positive.

As a family, we searched our hearts and our souls to find some kind of direction and have found a renew in faith, which was long overdue. We have also found a new, comforting blanket of support from our families and friends that is something everyone should experience! Grandmas Marlene and Diane each come one day a week to visit and help out.

We have our good days, and our bad days. But thankfully the bad ones are getting more infrequent; yet we still shed tears everyday. Charlie is just getting more beautiful with each day!!

We are fearful for what the future will bring to us, but we are EVER so THANKFUL that Charlie is currently in very good health. So far the only signs of SMA he is showing are his floppiness, bell-shaped ribcage, and sweatiness (which I thought was yet another trait he was taking over from his dad:)). He had a cold a few weeks ago, but we kept his nose clean and he slept in his carseat, just like any 2 month old with a cold.

Having him healthy is truely a blessing because it is giving us lots of time to learn what special care and equipment he will need, ie therapists, wheelchairs, carseats, etc... It has truely amazed us that when children are diagnosed with diseases, they don't have a "checklist" or "instruction" book to send you home with. You learn on your own, or from others that have been there before you!

Because there's no cure or treatment, it's really just a matter of keeping Charlie comfortable and virus-free. We think we are doing a pretty good job of that because he is smiling and talking up a storm!

Again, thanks for your ongoing support and please come visit (if your not sick)!

God Bless and please keep Charlie and our family in your prayers.

Kathy, Jeff, Abby, Maggie and Charlie

PS Just in case you were wondering, Dad did a GREAT job at the Twin Cities marathon. He finished with a good time and is feeling pretty good. He's actually discussing a strategy for next year!!

We

Sunday, September 30, 2001 at 01:53 PM (CDT)

We are very anxious to begin this website for Charlie. Thank you for taking the time to think about him and visiting his new site!

Our intention for this website is to keep you informed on how Charlie is doing, since being diagnosed with Spinal Muscular Atrophy. We will be providing you milestones he reaches, steps we take to keep him healthy and comfortable, as well as photos of him and his family.

Most of all, we would like to use this website as a tool to reach as many people as possible to educate them about SMA in hopes to someday finding a cure for Charlie. Please see the link below to the Families of SMA website.

Please be sure to sign in at the Guestbook each time you visit, so Charlie can remember you were here. We also ask that you pass this site on to EVERY person you know.

There is no greater power than the power of prayer!

Click here to go back to the main page.

----End of History----