Caitlin Dickey's Journal
Written May 15, 2013 9:22pm
Caitlin is with us and comfortable. Last night, we finally got the suctioning under control and she slept very comfortably. She woke up this morning and we had a few moments of eyes opened and hand squeezes. Even a few words said pretty loudly, though we could not understand what she said. She gave a lot of hand-signed "I Love You's".
She has been sleeping since this afternoon. No hand squeezes, no eye opening. Every once in awhile she'll raise her eyebrows to our conversations.
She had a lot of friends visiting her. Today, we kept it a little more quiet after school with them. We want to reach out and let all parents know that they can contact school (both Hopewell and JPLIS) if they feel they would like their child to talk to someone to help them through this hard time.
No matter where tomorrow brings us, the Zumba event on Friday is still on. We want to make this a day of celebration. Caitlin would have loved to be there. She loved to dance and this is totally up her alley. Thank you to all putting such hard work into this. It will be a great event honoring her life :) http://pcflv.org/news/zumba-for-caitlin
Praying for a peaceful night.
Written May 14, 2013 10:52pm
Last night, things got a little bit harder for Caitlin. Before bed, it sounded like she was getting gurgly with mucus in her throat. Around 3am, she just seemed so labored. I got Jim downstairs and we spent the rest of the night/morning by her side. Her oxygen numbers were going all over the place. We were pretty scared. After awhile, she stablized a bit and we may have gotten 1-2 hours of sleep. Jim and I took turns snuggling with her in bed.
We called our nurse and she confirmed that there was fluid in the lungs. She still tried to talk a bit, though very garbled. I held my hand up to her eyes in an "I love you" sign and looked down at her hand and she was signing I love you back :)
We had some pretty tough conversations on next steps. Caitlin is changing on a day to day basis. Signs are pointing that her time is sooner than later.
Mother Laura, from our church, came to visit today. She has been so supportive through this whole journey. She gave communion to Caitlin and our family. Jim, myself, Jim's Mom, my Dad and Janet were here, as well as the social worker. After communion, she gave a blessing of the animals on her three dogs :) They are her "shepherds". It was common mistake, even with pink leashes, a lot of people at the hospital would call her dogs "he" or "him". Caitlin would always correct them. When Mother Laura called one "he", Caitlin gurgled "she"! She may not be able to communicate well, but we heard it loud and clear :)
The hardest discussion was about what would we do when she passed. We have a meeting with the funeral home tomorrow... something we should not have to be doing for our own daughter...
We first wanted to keep things pretty quiet because of the turn of events, but then decided to welcome any visitors in to visit. Having people around is good. If ever there is a time we decide we need it more quiet, you will know. After school, Caitlin's friends gathered around her bed, reading stories and holding her hand. Before leaving, they sang Happy Birthday to her. I love those kids, they are so good. I pray they forever have their friendship with Caitlin imprinted in their hearts.
By the end of the night, all Grandparents made it here to spend time with our girl.
Tonight, Dr. Phillips came a few days early to check up on her. He wanted us to get ahold of a suction so we could get the mucus out of her throat. We also needed a stronger oxygen machine, as we were needing to raise her oxygen higher. We got a pretty quick delivery of those items, even later in the evening. We love Dr. Phillips. It was a comfort to have him here. We are grateful for his care all of these years.
We are fortunate to have Jim's Dad, a retired Dr., in the house, to help train us to suction her throat out. Jim graduated, I still need training. Her numbers increased greatly after this was done and she was so much more comfortable!
It is going to be a challenging night. We're sleeping in shifts. Caitlin is needing suctioning to be comfortable. We also want to be there for her if needed.
Sadly, she does not have much time. We just don't know when, but it may only be days.
Please pray for our whole family during this time. It still does not feel real. I wish we would all wake up from this nightmare and she was getting up in the morning to go to school.
Love our girl with all of our heart!
Written May 14, 2013 12:10am
Caitlin is SO LOVED! Seriously! We all know she is special, but the actions of many people are totally supporting that fact!
Sunday, was of course Mother's Day. I had "Breakfast in Couch" (aka: my current bed). Jim, Jakob and even Caitlin helped make myself and Grammie breakfast :)
Sunday was also the opening game for Caitlin's team on the Miracle League. Caitlin's team is the Giants. Thanks to Melissa, the executive director, and all of the volunteers that made it a special day for Caitlin! We drove up to the park and there were pink and purple balloons with streamers lined up around the stadium! A giant poster with Caitlin's picture and Birthday Wishes welcomed us. Caitlin got to throw out the first ball and this time, it was Jakob handing her the ball before she threw it out :) After the game, there was a birthday cake too :) Thanks to the Miracle League for caring so much. They really do a great job making kids feel included and providing a safe and accepting place to have fun no matter what your ability.
While there, the local news (wfmz) was there to do a piece on the Miracle League and Caitlin. Jim had emailed them before the big event. A quick sidebar memory about this news station is that when Caitlin's room was in the back of our house when she was much smaller, she used to say "night night" to the station's towers on the hill in view. Those will always be Caitlin's towers to us :) Back to the news, They did a great piece highlighting the Miracle League: http://www.wfmz.com/news/news-regional-lehighvalley/new-baseball-season-for-miracle-league-of-the-lehigh-valley/-/132502/20119764/-/loijd9/-/index.html
They also took a lot of shots of Caitlin and interviewed both Jim and I. We were both nervous on how it was going to turn out because we both felt we didn't do it justice. Of course the second the cameraman walked away, I started babbling about other stuff to the reporter and it felt much more natural talking without that camera! Anyway, they did an outstanding job editing the piece together. It saddenes me that all of this focus is on Caitlin for this reason, but happy that we can celebrate every day we have with her. http://www.wfmz.com/news/news-regional-lehighvalley/caitlin-dickey-celebrates-birthday-at-miracle-league-game/-/132502/20119788/-/pbeuwbz/-/index.html
Monday, what started out as a special project with our friends at Home Depot morphed in a joint effort mid-afternoon big party with Caitlin's Hopewell Elementary family! Most of her past teachers and support teachers came. One by one they came on in! My big question is, with half of Hopewell in our house, who was running the school?! Rumor has it Jakob was in charge ;-) They brought boas, hats, sparkly stuff, all celebrating Caitlin's birthday! It was definitely so special to have each and every one of them in our house for Caitlin. They have all been such a huge part of her life! Thank you for always looking out for our girl and loving her!
After the school crew went back to see if any damage was done (ha!), our Home Depot friends took over and showered Caitlin with gifts and helped her make a bug house :) She now has a very girly hammer and screw driver too - best to keep Daddy and Jakob away from it :). While they were here, Sarah, who has totally taken the reigns of all of the great Home Depot efforts, got a call approving a big donation to Camp Sunshine in Caitlin's name! Wow! Sarah and Home Depot, you have gone above and beyond and we thank you for everything you have done for Caitlin and our family! For the locals, the Home Depot that has contributed so much is the one on Lehigh Street :)
There have been many more amazing things going on. Just another shout out to our neighborhood! They just amaze us every day with their thoughts and generosity. Seriously, we could not be surrounded by better people! Several other things brewing in the next week celebrating the big birthday! And of course there is Zumba on Friday!
Update on Caitlin. She is slowing down every day. She is very tired. After her ball game, she slept from 3pm until morning :( She woke up slightly for Jim and I as we found some of her favorite music on the TV and sung to her. Today, she was awake almost all day! Lots of activity around her. Though, she was still very tired. She no longer is able to smile, but we did get some laughs out of her. She still wants to eat and drink little bites through her mouth, but it is getting unsafe. The food or drink will sit there and we are afraid of it asperating through the wrong pipes :( She has times where we understand what she is saying (slightly) and times where it is very difficult. Most questions can now be answered with a thumbs up, thumbs down signal.
This is so very hard to watch in front of our eyes. Our little girl. Some days, it feels like an out of body experience. People couldn't be talking about Caitlin, that isn't happening to her... right?! Ugh! Just not real. It can't be...
I'll leave you with the speech that Melissa read while introducing Caitlin on the Miracle League field. It is
Jimmy Valvano's speech at the espy awards 20 years ago.
"To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.
Valvano's final words are priceless: "Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul. And those three things are going to carry on forever. I thank you, and God bless you all.
His foundation's motto is.....
Don’t give up… don’t ever give up"