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Journal entry by krisanna's mom laura

One of the first things I remember about my friend Stephanie is her belief in light as a source of power … as illuminating the soul and not simply the space … as something to be shared and not merely turned on and off with a switch.  At the time, I didn’t grasp the depth of her philosophy, but I believed in her, so it worked for me. 

Then I studied art history and my vision of the world changed. I discovered the power of light in the alignment of Newgrange with ancestors and Ramses’ temple with gods, in the incomparable Gothic cathedrals and their rainbow promise, in the dramatic Baroque and Caravaggio, in Vincent’s sunflowers and starry skies, in Picasso’s lone bulb. 


Meanwhile, Krisanna arrived and my physical world changed :-). Early on I grasped the importance of light when she needed me during the night.  Shortly thereafter, I revisited the magic of light to chase away monsters and embolden my Boo.  More importantly, I understood the power of one teeninsy girlie girl to light up the world around her.


However, Krisanna’s diagnosis turned it all upside down … yet, despite the darkness that threatened to envelope us, we were mesmerized by her light that strengthened us to embrace hope.  Hope is tricky. It’s always a choice. It means acknowledging the reality while believing in the odds. Krisanna understood the reality, but she chose to live in hope.  In her final six months, when she knew the threat was greatest, she recognized hope in bright sunshine and her unshakable faith in Mr. God.  By embracing those sources of light she rose above the many challenges that could have plunged her – and us – into the darkness.  Instead, she showed us how to seize each day in the way we now refer to as living in yellow.


Recently another friend and I kneaded the idea of Krisanna’s light.  Our conversations brought me to this meandering on this week of the the 105th 4th since Krisanna went to heaven. 


When it became obvious Krisanna would spend her last days at St. Jude, the chaplain (her good friend, Lisa) brought in a tea light candle for her bedside (battery-operated, of course).  I don't remember exactly what she said to Krisanna (who was asleep at the time ... in that slipping in and out of coma/last few days kind of sleep), but I remember the immediate comfort I felt when she said Krisanna’s name as she turned on the light and placed it on the bedside table.  Days later, when Krisanna had taken her last breath, I asked if I could keep the candle - a precious transition relic. I lit that candle in the hotel room that night, in the car on the drive home, in our home as soon as we entered, in the new house when we moved in, each holiday, and so many other times when I wanted to feel her presence.  One day it wouldn't turn on.  Reluctantly, I replaced the batteries knowing it wouldn't be the same light if it had a different power source.  Well, it sure wouldn't!  The light wouldn't come on!  I even tried brand new, straight-from-the-store batteries to no avail. I was so sad.  Yet, I couldn't bring myself to discard or dispose of the candle.  Instead it has perched on my dresser, basically untouched, in the same place for at least 7 years. 


One morning this week I was running late for work largely due to time spent exploring ideas for Yellow Day this fall.  Kicking myself for focusing too much on a future event, I reached for my curling iron, and I saw the light from the candle burning.  At first I truly doubted my eyes!  I ran to get my phone to snap a photo hoping it would still be on when I got back to the room.  You can see it in the photo attached - just look past all the mess to the small golden yellow glow behind the necklaces.


I drove home from work that afternoon with joyful anticipation checked by protective reality:  would the light still be shining?  I headed straight to the bedroom and discovered the candle was no longer burning.  So, I gently picked it up to take a close up snap of the holder (since it was expecting a stretch of anyone's imagination to really see the light in the photos I'd taken with my "really old" phone). As I placed it on the counter, the light flickered briefly! - so briefly I thought I imagined it. I discovered a fragile connection somewhere within the candle because if I jostle it just so, it will come on, but when I relieve the just-so pressure, it breaks the connection. Clearly, I shut the drawers of the dresser "just so" that morning making the light come on.


Now, many people will think I’m crazy.  That’s okay.  Here’s what I know in my heart:  Krisanna’s light still shines for those who knew her, and it is my Momu job to keep her light of kindness and love and faith shining for others to see.


And here’s what I know for numbers peeps:  105 (the number of 4ths of the month since 11.4.2009) divided by 15 (the years K lived) = 7 – aka, the number of years that candle has sat on my dresser without flickering!  That's a pretty powerful, "Hi Momu!"


Here’s to you, Girlie Girl, on this 4th with love and hugs and thanks for your continued bright yellow light!


 


 


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Journal entry by krisanna's mom laura

"Their laughter will make your heart melt. Their strength will make a grown person cry.  If you ever see a child fight cancer, it will change your life forever." 

Today is National Cancer Survivor’s Day, and Krisanna survived 12 years beyond what was predicted!  So I’ve felt her hugs and heard her giggles through so many yellow moments today … new yellow sunflowers and fluttering yellow butterflies in the yard, several golden yellow cars on the roads, a yellow squeeze ball and yellow tape at the Blood Donor Center, a gynormous yellow ribbon greeting travelers at the airport.  Most especially, as David played the reflection music today, I felt Krisanna in the sanctuary.  Yet the best surprise happened when my friend leaned over during the song and whispered, “I was just thinking about Krisanna. I could just feel her here for a minute.”  I mean, wow!   

I’m thinking Krisanna headed out to Camp Rap-a-Hope after church.  Today is the first day of Heaven-on-Earth camp (Krisanna’s name for it) – and it’s circus year J I cannot overstate what camp meant for my girl. I do not exaggerate when I say Krisanna lived for the joy, hope, and love that define Camp Rap-a-Hope. Click through the photos in the gallery and you’ll see all three in the smiles and laughter. 

 

Please keep the campers in your prayers this week:  prayers of thanksgiving for another week of camp; prayers for courage and strength in the hot week ahead and the journey beyond. Please also keep in your prayers the counselors and board members who volunteer to spend the entire week out there – some even giving up a week of annual vacation to do so!  Special shout outs to the Camp Grace staff who make magic and the restaurants that donate meals - especially Krisanna’s favorite eatery Wintzell’s.

 

With love and hugs today to Sean’s mom, Darcy’s mom, Chesley’s mom, Tammy’s mom, Kerri’s mom, Mikey’s mom, Annaliese’s mom, Amar, D Clinic, Amy, Justin, Lizzie, Galina ... and continued prayers for Avery :-) 

 


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Journal entry by krisanna's mom laura

We were having such fun all three of us. Krisanna was laughing, and we were baking cookies.  Then, it was time to head to the airport … and once there, as we said goodbye, I hesitated – not sure if this were one of the airports where we could go through the first gate and into the big concourse to wait with friends or one where we should hug and part ways at the entrance.  No one else was around, so Krisanna headed down the hall around the corner, and we followed amused by her confidence.  It reminded me of movie theater entrances that curve so as to mask light from outside.  I briefly lost sight of Krisanna as we emerged into the wide open, crowded strip.  Ah! - a sighting from behind. Boy, she was moving fast!  Then she was nowhere – and the entire place grew distant as my heart rate quickened.  I rushed through a nearby door and found myself in a wide, darkened, empty lounge area like the Riverview - the anthithesis of the concourse on the other side. “Krisanna!” I shouted into the stillness.  “Can I help you?” a lone figure offered emerging from behind a desk.  “I’m looking for my daughter! Did you see her come by just now?” I pleaded.  “Krisanna!” I shouted again in my loudest director voice.  “Here, let’s call for her,” the lady suggested as she picked up a house phone.  “Yes,” I said as I headed back into the concourse thinking she would never hear it.  And I stopped as the realization hit me:  They won’t find her because she is dead.  They will think I’m crazy. “No thank you,” I said to the lady.  And by the time I walked back through the door, I was fully awake. 


 


I’ve dreamt about Krisanna twice in a month.  The first was Easter morning, and I awoke feeling so warmly happy and amazingly calm.  The second was last night – this dream.  I can count the number of times I’ve dreamt of her on two hands with fingers left over.  Yet, each time I reached the moment that I realized I was dreaming and not living the event, I’ve wanted to go back to the dream – until last night.  I don’t know why this one was different. 


 


My heart is incredibly heavy in the days leading up to Mother’s Day.  Well-meaning people ask, “Are you doing anything special for Mother’s Day?” or “What kind of plans do you have for Sunday?”  I want to say, “Well, you see, traditionally my daughter and I used to go shopping for summer camp clothes and accoutrement for Camp Rap a Hope, but we don’t anymore.”  Instead, I smile and say, “It’s always full of surprises, isn’t it?”  Then there are those who aren’t sure how to approach it.  As we wrap up a conversation they’ll say, “Well, have a happy ….” There it is - the hitch in the voice, the interrupted rhythm, the skipped heartbeat, the awkward finish – “… a good weekend.” “Thanks!” I say with great appreciation. “You, too.”  The week is long and the hole feels deep, and I fill my time with noise so I don’t focus on the 3,112 days of silence.


 


Yet – Mother’s Day!  When the day arrives, the celebration begins.  On Mother’s Day, I am still a mom!  All the rest of the year, when I am supposed to have moved on, my being a mom is - complicated.  Today, on the other hand, is joyous and proud, and I celebrate, with every other mom, the gift He gave us. I proudly wear the Happy Mother’s Day bead necklace Krisanna made for me in physical therapy.  I bake traditional cinnamon rolls, and I eat things we used to eat together. Usually she pops up all over the place, and today was no different.  Precious cards from family and friends filled my mailbox – even Hello Kitty – greeted me over coffee.  When I walked into Walgreen’s, the first two people in a long line were wearing yellow.  At a checkout counter I found pink, purple, and yellow M&M’s … her colors … packaged in a sweet Mother’s Day wrap.  All day I planned to drive through Arby’s for our traditional mozzarella sticks and chocolate shake, but on my way home I started talking myself out of it … too many unnecessary calories, too much sugar, etc., etc., etc. Then she waved be down!  As I approached the restaurant, what did I spot parked in the front parking lot?  A yellow VW bug!  “Stop here Momu!”


 


The absolute best part of being a mom is knowing you have been given the opportunity to make the world a better place.  The hardest part of being a mom whose child is in heaven is the fear her child’s influence will be forgotten.  The greatest joy of being a mom is hearing from others that your child has made a positive difference in their lives.  The happiest moments for a mom whose child is in heaven occur when others relate stories or incidents or happenings when her child has caught their attention.  I am grateful for each post or photo or email showing me Krisanna in a single yellow flower in a front yard, bouquets of flowers in a hotel lobby, yellow ribbons on a marathon shirt, full yellow vines glimpsed on a drive, yellow shirts and ties, yellow cake, flowers on a walk or images on Instagram and Facebook, turtles who make a driver stop as they cross the road to camp, people wearing yellow wrist bands in her honor, awards given to celebrate her legacy, donations made to a scholarship in her name.  



This Mother’s Day – like my very first before I had any clue what lay ahead – I am incredibly, indescribably grateful He trusted me to be Krisanna’s mom. And although it has been a long 3,112 days-filled day since I heard her banging pans around in the kitchen to make coffee and orange danish for Mother’s Day and felt her arms around my neck as she encouraged me to open a card filled with homemade coupons, I am especially thankful for the powerful knowledge that our hearts and souls will be united again. 



Happy Mother's Day - especially to Sean's mom, Chesley's mom, Darcy's mom, Mikey's mom, and Josh's mom

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Journal entry by krisanna's mom laura

I headed over to the Eastern Shore Center to meet my girl where I often find her on special days like birthdays, heaven birthdays, holidays ... and Mother's Day.  It was one of her favorite places to shop with Build-a-Bear as the obligatory first stop.  Claire's, Barnes & Noble (American Girl section), Hallmark, and "the ice cream place" plus Objets (Vera Bradley section), Coldwater Creek, and various other now-closed places ... how much fun can two girls pack into a day?!?

This time, I broke with tradition and started at World Market. I’ve never visited the store before, but due to traffic patterns, I found myself trapped in the lane that led me to it. Clearly, Krisanna had a new start place in mind!

One of the unexpected challenges on this journey has been handling the sense of loss when places that hold special memories shutter their doors for good. It never occurred to me that would happen with the Disney Store where every girl transforms into a princess as she crosses the threshold … or Morrison’s where every Thursday night a clown made balloon animals for kiddos … or TCBY where shivers taste best drowned in toppings … or Kmart where she would disappear under racks and giggle for me to “find her” and wave to every stranger we passed. Stepping into the Memory Lane protected by old favorite places briefly shrinks the hole in my middle because I hear giggles and I see dancing and I feel her arms around my neck. It also keeps her real because, sometimes, with the joy comes accompanying images of disappointment on her face when I’d say, “Nana, we don’t need another princess dress today,” or “Two toppings is enough for today!” However, as Barbra sings, “It’s the laughter we will remember whenever we remember the way we were,” and this Momu loves embracing the laughter.  

Thus, I eagerly anticipate Memory Lane trips, and [full disclosure] I talk to her a lot when I embark on the journey. Consequently, when I unexpectedly encounter Access Denied, I feel like I am in a Twilight Zone episode. I stare at the empty (or new, differently occupied space), and I want to scream at passersby, “Don’t you know Krisanna lived here?!”  My heart sinks at the lost access to that life; the hole in my middle expands like one of those little toy dried out sponges when put in water. For a time I thought that just as there are no new photos to be seen, there are no new places to immerse myself in the laughter. 

Then, I started trusting my middle. I recognized times Krisanna was telling me to stop somewhere or go in a store or be still and sit.  When I opened my heart and my eyes, I would see signs – sometimes really yellow like in the photos I posted in the gallery; other times a K or a butterfly on an object; occasionally a person I hadn’t seen in awhile who had a story to share such as seeing Krisanna’s signature with other St. Jude’s children’s signatures on a wall in a Chili’s restaurant. (Eat at Chili’s – they give to St. Jude’s!)

I knew we were going to make a new memory when traffic kept me out of the lane to Build-a-Bear and led me to World Market. Hopefully, I stepped inside and immediately myriad yellow flower arrangements grabbed my eye. Elephant earrings, a yellow scarf … then a yellow frame all alone amongst a shelf full. I rounded the corner near the cookies she liked where a couple talked engrossed in the spice shelf with their precious tow-headed three year old playing between their legs. “Happy Mother’s Day!” he quietly called to me smiling as I sauntered by. Clearly I was the first stranger he had greeted because his surprised young mom exclaimed, “Awww, that’s so sweet son!”  Thrilled, I turned to thank him, and for a brief moment, we smiled at each other. Then he bashfully emerged from behind them, grabbed my legs, and gave me the sweetest hug ☺  Oh, be still my heart!  “Wow!” I laughed as I hugged back. “I needed that!  My girl lives far away and she will be so glad someone gave me a hug today.”  With a grin, he was hiding behind his parents again only his blonde hair peeking through.  

Pure love spilling from children’s hearts spreads powerful happiness! As they headed to the check out, my heart overflowed with that bright yellow sunshine Krisanna ascribed to her best days. In Tuesday Morning, I found a grand yellow beach towel with sun decor. A new yellow bear perched on the wall in Build-a-Bear World. A yellow butterfly plaque beckoned as I stepped into Hallmark, and fun new advice books filled the American Girl section in Barnes and Noble. When I arrived in the ice cream/cookie store – traditionally our last stop – I swallowed another dose of Access Denied reality: no more pretzel bites. My breath drew short. All the noise in the busy crowded room abated. What it really meant was no more Memory Lane girl chats over hot salty baked dough pieces and sweet bubbly Cokes. I struggled. Yet, in an instant, I saw in my mind’s eye that sweet little boy hugging me, and I heard Krisanna assure, “That’s okay, Momu. We don't need pretzel bites today.”  And my heart smiled because she is always with me – and I know that through her love we will make new memories together.  

And on Mother’s Day - and every day - I am so very grateful that Mr. God chose me to be her mom.
 
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Journal entry by krisanna's mom laura

My typically bubbly girl sat pensive in the back seat after I picked her up from Montessori Academy.  Truly, it was a rhetorical question … she had something important to tell me, and this was not the time to discuss royal lineage.  Her teacher Miss Karin engaged the class, “When your mama picks you up today, ask her if she went to the bank.  She will tell you the bank is not open.  Do you know why the banks aren’t open?  Today we honor King Martin.”  

Krisanna launched into the story as if riding a roller coaster – fast, slow, horrified, indignant, unbelieving:

“You won’t believe this, Momu.  His skin was brown so they laughed at him, and they wouldn’t let him on restaurants or on school buses or in motels.  Then all of his friends got together, adult and young, small and short, and wanted to fight.  He said, ‘No let’s stay in the restaurant and pray.’  And you won’t believe this, they took pictures and people began to understand and not knock them off school buses.  And then the people let him go on the school bus, and everybody was allowed to go in the restaurants with him and in the motels with him.  You won’t believe this – one night when they were getting ready to talk, somebody got a gun and killed him!  And you know what?  This is not fiction – it really happened.” 

Although cancer had claimed a chunk of innocence from Krisanna’s childhood, St. Jude’s had shown her how to believe in goodness and hope.  That day, in my backseat, I saw another piece of my girl’s innocence disappear.  Yet, she still believed a hug, a smile, a friendly greeting could change a person’s day.  Not a King Martin day passed in the next ten years that we didn’t say at some point during the morning, “Did you go to the bank today?” And it would be a day full of smiles and greetings.  Today, I wish I were going to hear her ask me when I get in my car.

Last Friday was a 13th – a lucky day for Krisanna because she chose to make it so. In 2002, Krisanna’s surgery left her compromised on her left side: no peripheral vision, a hand with a will of its own, and limited mobility that took lots of rehab to walk again.  One particular Friday the 13th, Krisanna bravely ventured into her first appointment on her own, but she fell as she tried to turn left - her weak side.  “It’s just Friday, the 13th” her nurse assured her. In the cafeteria, she chose a drink without a lid, yet her sometimes-uncontrollable left hand knocked it all over herself and Miss Lisa.  “It’s okay,” Miss Lisa promised. “It’s a typical Friday the 13th thing.”  It felt like a one-step forward, two-steps backward kind of day.

“I hate Friday the 13th!” Krisanna declared. So I proposed, “Well, Krisanna, let’s think of what can make Friday the 13th a good day – to show it that it won’t get the best of you … maybe make it better for everyone else, too.”  She pondered and then my list girl named all those things that made her who she is:  hugging people, saying hi, telling a joke, having fun. Thus began a new determination and tradition of wishing everyone a great day on Friday, 13th.  For a couple of years she would call the nurse at St. Jude on our way to school.  It made for a disappointing Friday the 13th the morning we called and discovered the nurse was no longer with St. Jude’s.  Yet, by the time we got to school, Krisanna announced her positive take: “That’s okay Momu. Maybe she’s having a baby!” :-) 

Each Friday the 13th, I wonder how Krisanna will say hi to me.  Last Friday Krisanna’s friend texted, “Happy Friday the 13th” early in the morning.  She had recently run a marathon – and her medal was yellow :- ).  Later, her 3rd grade teacher told me she had a flashback of Krisanna sitting in the chair facing her with a big smile.  How awesome that she shared that story!  It was a powerful, “Hi Momu!” from my girl.

Several people have asked recently when I’ll post on Caringbridge again. Beyond the initial surprise of the question, I’m not really sure what to say.  I miss my girl.  It doesn’t go away.  I’m still trying to figure out what I am supposed to be doing if I’m not Momu - even 2627 days later. Many days feel like one-step forward, two-steps backward kinds of days.  I found a box in a closet the other day – unexpected.  On the top was a note that read, “Do not open with out prmission.”  Exploring it put me on a rollercoaster … laughing at the contents, excited to show her what I’d found, sad that I could not, hollow as I rubbed my finger across her signature, joyful that I found some photos I didn’t remember ever seeing before. 

The best part of getting to be Krisanna's Momu is that she showed me how to believe that when a day or week or month feels like a Friday the 13th, hope is found in smiles, hugs, and the goodness of others - and colored in yellow.

Wishing you an enlightening Martin Luther King day and a bright yellow 2017.

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Journal entry by krisanna's mom laura

Yellow Day opens this weekend nationwide - a heartwarming faith-based movie whose title was inspired by Krisanna's approach to life encapsulated by yellow. 

Summer 2009 -- "The entire hospital was running behind yesterday, so she was late for every appointment which frustrated her because she lost time with Mr. Justin (school) and Miss Jessica (OT).  However, Target sponsored a cookie decorating event yesterday in the dining hall. She told everyone about her friend Miss Frances who taught her how to decorate cookies, and she even showed one of the executives a few tricks.  She decorated a few to take to her favorite people at the hospital today." 

This was the day that she started coloring her days. To help her deal with the teenage cancer emotional roller coaster, Miss Amy suggested she color her days in a journal and asked her what color would she choose for her best day. The next morning, Krisanna chose yellow for a "bright, sunshiny day." She colored every day after that!  So, Miss Amy, thank you~thank you~thank you for the gift you gave Krisanna!

Make it a yellow weekend and go see the movie! It runs through Tuesday or Wednesday in most theaters. Click here to check for showings in your area, then tell us about it here or on the Yellow Day facebook page.

Wishing all a bright sunshiny yellow weekend :-) 

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Journal entry by krisanna's mom laura

New Year’s Eve …  aka the night we cuddled under blankets watching movies and drinking hot chocolate until it was time to switch to Times Square for the 11p CT ball drop … after which you gleefully headed to bed over-the-moon happy you got to stay up until the new year. 

Midnight … fireworks exploded all around our tiny house … a mid-winter 4th of July concert of fireworks as if each set responded to the other pop-pop-popping across the neighborhood. Shielded by your white noise machine, you slipped into dreamland and I watched - amazed and thankful the bursting and fizzling didn’t jolt you awake. I really didn’t want to burst your bubble that when the clock dropped in NYC, the grand world-wide clock changed its final digit! 

Tonight is New Year’s Eve.  

We no longer have the sofa, and tonight I miss it. You would like the new one … but it doesn’t grab us the way the old one did. It doesn’t hold a lifetime of laughter and tears, “crashing you” and stomachaches, and Girls’ Night In secrets.

The fireworks began sporadically whooshing and crackling a couple of hours ago.  They will continue that way off and on all night – more a cacophony than the symphony of celebratory sound in Copperfield.  You wouldn’t like listening to it all night …in fact, I’m laughing as I hear you exclaim with exasperation, “Don’t they know it isn’t midnight yet?”

And so … it feels different.

And this thousand years’ long day (TYLD) is really feeling like a thousand years.

And I miss you.

2015 - you and I so looked forward to this year. Your class would graduate in 2015 … and I had no doubt your spirit would be right there with them since you were so determined to graduate from UMSW.  Somehow, since it was a goal for you, it became a goal for me. I determined to finish 2015 strong. Thus, I believed with all my heart that 2015 would be the best year of the six since 2009.

Indeed, graduation week was the pinnacle of the 2015 roller coaster ride! Your sweet spirit was ever-present as your class, their counselor, advisors, and parents, and so many who loved you dearly all colored graduation in the brightest rainbow of yellows. For a momu missing her girlie girl, it was one of the best weeks of the TYLD!  Still on a high, I immediately embarked upon The New York Sisters’ Trip – and you joined us for sister-girl fun, mind-blowing art, and the life-changing Lion King! In short, it was Like +1000 + 15 :-)

On the other hand, the 2015 roller coaster ride dipped to surprising, unexpected, inexplicable lows. As I’ve pondered the power of this grief journey, I’ve realized that the numbness of waiting has worn off, and the reality of never-again is more often a reluctant resignation than a missile strike to my midsection.

Last week, I unpacked a box Daddy brought home from Nonnie’s house where I discovered our first formal Christmas photo together.  I’d forgotten how much you already loved the camera at 1 year old!

You always show up at the perfect time … and I am so grateful to Mr. God.  You’ve appeared in all kinds of places this week … Target shelves, inspirational photos, quiet moments.  We had great fun and lots of laughs as you helped me with all my Christmas shopping.

I think, though, your greatest Christmas gift to me this year came in the form of a question. As Yellow Day opened, people asked to hear the story of how you chose yellow for your best days.  Then yesterday, as our 2015 roller coaster slowed to a rest, Aunt Laurel asked me what color did you choose for your worst day. I got to tell her that on the day you found out the tumor was back and there was nothing more Dr. Gajjar and St. Jude's could do to stop it, you said, “Momu when you write on Caringbridge, please say it was blue when we were at the hospital and found out it was a brain tumor, but it was yellow when Miss Amy talked to me.”  Crazy Uncle Brady said, “She always saw a bright side.”

Today, when I revisited the page in the journal, I saw that you continued:  “but it was yellow when Miss Amy talked to me and when I got the High School Musical sticker book … and when we went to the Halloween Carnival at Grizzlies House.”  Thank you for sending me to that page! I smiled in my middle as the yellow hit me: that on your worst day, overwhelmed by upsetting news, your special friend Miss Amy (who taught you to color your days) listened to your story; you got a High School Musical sticker book from a movie that connects you to Drew Seeley in Yellow Day; and we got to go to a fun Halloween party where they took photos of the patients – thus we have a holiday family photo on our last coherent day together. Such powerful yellow to counter devastating blue!

The Times Square ball has dropped once again and fireworks greeting 2016 are a memory in the east. Yet it is still 2015 here in RosswoodLand. Bright lights cover the night sky, a fitting tribute in the waning minutes of your big year. Thus you remind me that time isn’t always what it seems, that even the brightest burst of fireworks will always fade away, that the heart - not furniture - holds the fondest memories ... and that always, always, no matter how blue the TYLD, I can find yellow to make it bright.

It's time to go turn on the white noise machine, slip into the dreamland of 2015, and wake up to a brand new bright yellow year :-) Happy New Year Dollface, Girlfriend, Precious, Girlie Girl!

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Journal entry by krisanna's mom laura

11.04.15

At 2:00 this morning, I kept playing replaying a moment I wrote about exactly that time, exactly this day and date, six years ago:

Krisanna had a great day yesterday … mostly pain-free and those times she began to experience any pain we were able to control. She told us of some angels calling her up and called for her daddy to lift her up to them. She told someone she had to ask me first but I had play practice. She got to choose something beautiful … we don’t know what, but she kept asking, “Which one?” and when I told her “Whichever one you want” an absolutely beautiful smile lit up her face. Then after a few minutes she said, “Mom. We have to find the ipod.” She wanted to listen to some music and was right back with us in the here and now.

Why would she want to leave?  She believes with every fiber of her being that Mr. God will come in the door and put his hand on her forehead and make it all go away, and she can’t figure out why He hasn’t done it yet.So, while the angels are calling her to some beautiful great place where she will not need her rolling chair or her brace and her hair will be long and luxurious, Mr. God is going to have to come up with something really really enticing together to choose it over the three of us together at St. Jude’s and her exciting life plans.

Actually, I’ve replayed all of that quite a bit in the past couple of weeks. On the 25th, six years to the day and date that Krisanna and I drove to St. Jude the last time with Dandy the Lion at her side, our gospel reading was the story from Mark about Bartimaeus. When Bartimaeus asked to see again, Christ answered, “Go; your faith has made you well.”  Then our guest priest encouraged us to open our eyes to God’s signs.

So I’ve kneaded his message and that story...and Krisanna’s story…and the story that inspired her about the lady with the disease from an earlier Mark account…which led me to the little girl who He brought back to life. And, as always, I kneaded the idea that the lady had been sick for 12 years–the same as Krisanna. The little girl was 12 – the same number of years Krisanna had been fighting ATRT. They all believed with every fiber of their beings … and so, they were healed. I grappled with the stories and asked what was the sign? What was I supposed to take away from these stories that are so interwoven in Krisanna’s story when these very stories inspired my girl to believe as the figures believed, yet she is not still here? 

The following week, on the 1st, our readings were from Revelations and from John’s gospel. The Revelations verse “Mourning and crying and pain will be no more” resonated loudly. I eagerly embraced it knowing that we all prayed that Krisanna would feel no pain or misery in her final journey. When she asked, “Mama won’t you miss me?” I tried to tell her how much without crying. Instead I reverted to telling her that I didn’t want her to hurt anymore and that in heaven she would be so happy and carefree – no cancer, no brace, no wheelchair, no pain – physical or emotional. As those scenes from the past replayed (like they ever go away), I held onto the final line of the reading, “I am the Alpha and the Omega, the beginning and the end.” 

Since this day six years ago, I have clung to the connection between 15 and O.  O – the line with no beginning or end – is the 15th letter of the alphabet. Krisanna was 15 when she died. The numbers of her end on earth and beginning in heaven birthday  – 11.04 – add to 15.  She was a member of the class of 2015.  And now here, in 2015, when the dates align exactly with 2009, and the sadness is far more powerful than I ever anticipated, Mr. God is sending me these confusing messages about believing leading to healing - but my girl believed and she wasn’t healed. 

Then, from John we heard the story of Lazarus. Again, Christ raised a believer from the dead. He said to Mary, “Did I not tell you that if you believed, you would see the glory of God?”  

And there it was. My really big sign. Krisanna was healed. Not in the way she or I asked for – but she is definitely healed! As I wrote November 5, 2009, "What is the most vibrant, lively, smiling yellow? Because today is that day! Krisanna is running, jumping, singing, doing gymnastics, riding a bike, riding a horse, cooking ….. and she is most probably telling Mr. God all her ideas of how to fix the earth even as I write. Krisanna believed so she sees the glory of Mr. God.

This morning, I posted about the “Easter” rose that bloomed in my yard last week: I prayed so hard that Krisanna would visit me in my dreams.  She didn’t … but as I headed to work one of those mornings, I saw her waving at me in my front yard!  Just one more reminder that when Mr. God doesn’t give us what we ask for, He’s got something even better.  I wanted a sign; I thought I wanted it in my dreams.  Yet Mr. God knows I can’t photograph a dream and share it with others who believe in signs!

All day I’ve thought about the signs He sends - opportunities to trust His plan.  The yellow rose out of season telling me hi. The people who say they thought of Krisanna when they donned yellow clothing or accessories. The anniversary dates of our journey on which I see lots and lots of yellow. The photos of yellow cars & trucks, fields of flowers, pictures of tulips, gladiolas, and smiling rainbows that people send me because Krisanna popped in their heads. People who never knew her building a garden in her honor or walking to raise money for St. Jude’s. The Yellow Day movie that captures her spirit of determination and love of life. Her nudges – as Melissa calls them.  For example, Tuesday night Krisanna kept nudging me to go to Michael’s.  My head kept telling myself that I needed nothing from Michael’s; my middle kept telling my head I should go. Eventually, I caved. There, most unexpectedly, I saw one of her friends who was home from college. Truly - a happy sign!

Finally, I went to a store my sisters and I visit every year on today. I thought I was returning to check on a yellow chair I’d seen there over the weekend; I soon realized I was there for a different sign. When I walked in, I saw a precious Disney Simba doll next to the item!  Really? Today? Lion King’s Simba?  How had I missed it the first time? Everyone who knows us or reads Caringbridge understands what Lion King means to me and meant to Krisanna. The movie that startled her in utero - the very beginning. Her Ganz Lion, Dandy, that she chose to take on our last trip - that sat guarding her in hospital to the end. Immediately I took Simba to the counter where the owner said, “I just put this out yesterday.” Oh thank you! You see, I thought the yellow chair was the sign.  Instead, the yellow chair was there to bring me back for a bigger sign - a lion cub doll reminding me of the most powerful message from that incredible story:

Wait, there's no mountain too great
Hear these words and have faith …..

He lives in you, he lives in me
He watches over everything we see.

And just to seal it as a sign ~ the date on the check was 11.04.15.  Alpha.Omega  :-)

Wishing everyone continued days of bright yellow sunshine ~

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Journal entry by krisanna's mom laura

9.19.15

Hey Sweet Girl ~

To celebrate your birthday, I headed to the Eastern Shore Center today. The first stop: our usual destination – Build a Bear -- where I could hear the laughter from Krisanna’s Krewe as we built bears for your birthday party to send to St. Jude's. They still have your picture with Bearemy in the back room – and I loved getting to tell the girls behind the counter all about that night that Miss Melissa let you be the Camp Rap-a-Hope representative. As always, you grabbed my attention in another of your favorite stores, Hallmark, where I discovered a Halloween necklet and a fabulous bag in which says, “Pack your own sunshine!”  And I was really glad you showed me that the yellow purse in Belk that I wanted at the beginning of the summer was now 75% off! I’m pretty sure you were saying you wanted to give it to me for my birthday :-)

As I drove across the Bayway, I smiled remembering other great birthday milestones:  at 10 you were so excited to go to Ruth’s Chris with Aunt Mollie and Uncle David; at 12 you proudly showed everyone your newly pierced ears; you enjoyed a surprise birthday party in the Lower School office when you turned 13 given by the principals and teachers; our fun American Girl weekend made 14 memorable; and the fabulous spa party with Krisanna’s Krewe at 15 was awesome! Your classmates sang happy birthday and ate yellow cupcakes from Mrs. Diehl and Miss Meridy each birthday after that until this year. What was I to do for 21?  Drive … ponder … it hit me: a facebook page for your foundation, Krisanna’s Garden. Yes, girl, you are officially on facebook - except it wouldn't let me put an apostrophe in your name, so it's just Krisannas Garden.  Kind of ironic for an English teacher, eh?

I try so hard to imagine what you would look like today at 21 years old – but I can’t.  I did well morphing you as your friends grew older, but somehow … 21 is just beyond me. Sometimes I still think of us as the mom and girl in this card you gave me :-)   I put it out every year during our birthday week because it reminds me of when I used to rock you and I’d kiss your head with each forward rock. One night I thought you had fallen asleep in my lap, so I leaned my head back against the chair. The next thing I knew, your sweet little hand reached up and gently pulled my face back down on top of your head so I would kiss it some more. I still laugh aloud every time I think about it!

21 years ago tonight I was so happy – Mr. God entrusted me with a beautiful baby girl who was perfect. Today I had the best day celebrating in Krisanna-style. Tonight I continue to gratefully thank Him for letting me be mom to the best girl ever! I hope your birthday party in heaven was bright yellow and sunshiny with lots of pink and purple to make it pop :-)

 Love you to the moon and back double twinkle to infinity ~ momu

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Journal entry by krisanna's mom laura

For a week I was Mom again.  It. Was. A-W-E-some.

Krisanna’s Class of 2015 graduation week was such fun – and they included her in a big way!  The girls carried gorgeous yellow bouquets, her blazer graced a seat with the class, I got to deliver the commencement address, and throughout the Grad Night celebration following, no one was afraid to mention her name or share a story with a big smile and a hug. She flitted around all night long having a blast. (I added photos.)

Then Krisanna visited NYC. Well, we sisters celebrated Aunt Kelly’s birthday – and we saw Lion King!  Okay – I didn’t just see Lion King. I was totally mesmerized - transported by the magic of Pride Land. I laughed, I cried, I marveled, I cried some more, I wondered. AND she was right there next to me.  No, seriously, my sister randomly distributed our tickets, and when the show started, no one was in the seat next to me – seat #15

One scene that always grabs my heart is when Mufasa says to Simba, “Look at the stars. The great kings of the past look down at us from those stars.  […] So whenever you feel alone, just remember that those kings will always be there to guide you. And so will I.” (They stare at the stars in silence dwarfed by the infinity that surrounds them.) In the play, the gorgeous song “They Live in You” follows that dialogue. Brand new to me, in Act 1 the song richly resonates throughout Pride Land; then in Act 2, younger Simba sings it as a grand celebration of the circle of life. Absolutely stunning.

Not only does the scene powerfully capture the play’s message, it immediately brought to mind a scene from another of Krisanna’s favorite movies, Don’t Eat the Pictures: Sesame Street at the Metropolitan Museum of Art. In that film she first encountered the ancient Egyptian belief that when a person dies, his soul becomes a star in the sky.  I had just visited the Temple of Dendur at the Metropolitan Museum – the setting for that movie scene!  The entire time I was at the exhibit I heard Krisanna singing songs from the movie. To go from that exhibit and memory to the Lion King performance ….. wow - amazing presence of my girl!

(Did I mention, the Lion King marquee and all production materials are golden yellow?)

Many people know the significance of the Lion King story in the Krisanna Roberts story – and how it connects to 4th of July.  At six months pregnant and Mark and I headed to the movie theater on a hot, muggy July 4th in 1994 to see the new movie about a lion family that featured Elton John music.  During the stampede, Krisanna started kicking furiously!  She was not at all happy about that event even before she walked the earth! :-) We knew then she was a spirited, determined girlie girl.

I’ve long believed in the brilliance of the stars as Vincent van Gogh did - reflections of “Infinity on high.”  I also liked a quote on an angel statue given to me after Krisanna died: Perhaps they are not stars in the sky, but rather openings where our loved ones shine down to let us know they are happy. I miss my girl, but there is nothing like looking into a starry sky and hearing her say, "Terrific! How are you?"  Now I also hear the soaring voices from the powerful Broadway production assuring me:

Wait ~ There's no mountain too great

Hear these words and have faith. 

They live in you; they live in me.

They're watching over everything we see.

In every creature, in every star ~ 

They live in you. 

On this 4th of July, 21 years after Krisanna first “experienced” Lion King, I honor the circle of life. I think of Josh, Sean, Nicholas, Chesley, and the Tribe Eternal. I remember fun with Mikey and Tammy. I sing praises of the St. Jude's miracle-workers. I wish happy birthday to Krisanna’s Krewe, Tic Tac Toe King, Ad, Dominic, DIV, Unca Mick, and Aunt Beth. 

I thank all those who protected and continue to protect our freedom. 

Finally, I trust that Krisanna’s friends and classmates will fare well on their journeys – and when the mountain seems too great, they will see her example of fighting hard and being strong in bright yellow sunshiny days and golden starry nights – but mostly in themselves because, as the Lion Kings remind us, she lives in them!

Happy 4th with the traditional nod to Uncle Pete: Many who had a fifth on the Fourth failed to come forth on the fifth. [7-5-1955]

85921

Journal entry by Mark Roberts

Friday marked the end of week 2 which meant a black & white 2 bead for the protocol necklace Krisanna is making.  Her nausea has subsided thanks to the magic of  ondansetron, and the morphine controls the pain, so life is good :-)

We visited Shannon and Mick on Saturday where she painted a cell phone holder in the shape of Cinderella's slipper at a place called All Fired Up.  Now, if only we can locate her cell phone.....
She also got to create a painting in Miss Carey's (Haynes) studio which sits next to me drying.  It will command a space on the living room shelf right next to Miss Adrian's (Taylor) Happy Day landscape.  Shannon sent pictures, but I haven't a clue how to put them here.  Maybe Mollie will be able to help me.

She loves the cards and notes and prizes.  She reads each card aloud and places it on the table to view.  We have a basket filled with cards which bring smiles all day long from Jayne Fisher and UMS-Wright summer camp as well as from a
summer Sunday school.

She absolutely loves returning to Target House each day.  It is her favorite place to be.  She especially enjoys the arts and crafts room.   She tells me, "Mama, this is the best summer!" 

Have a great day, everyone ~

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Krisanna’s Story
       "Have a bright sunshiny yellow day!"

                                Krisanna Roberts

On May 26, 2009, 14 year old Krisanna celebrated graduation:  an MRI showed that the tumor bed remained stable following a 2004 gamma knife procedure on her third brain tumor, so she graduated to annual check-ups at St. Jude Children’s Research Hospital.  

Merely two weeks later, an MRI revealed that a tumor at the base of her spine was the source of pain she had been experiencing for a month as sixth grade wound down and the promise of summer beckoned.  She returned to Memphis for the summer.

For eleven years Krisanna Roberts battled an aggressive brain tumor called an Atypical Teratoid Rhabdoid Tumor.  She was St. Jude’s longest surviving AT/RT patient. The tumor first presented in the brain and returned twice following initial occurrence and treatment.  The fourth occurrence was the first time the tumor had presented in the spine.

Krisanna’s spirit and determination soared as she began what she called her “summer vacation at her home away from home” at Target House.  Arts and crafts was the name of the game ... and assigning each day a color unveiled the infinite spectrum of yellow for this pink and purple-loving princess.  In August, she returned home to Mobile, Alabama with big plans for seventh grade. 

On Septermber 1, Krisanna's spine scan showed that radiation had not reduced the tumor.  Hoping that long-term effects would reduce the size, Krisanna returned to school.  However, by the 3rd week of September, daily headaches, nausea, and emesis limited her activities.  By mid-October, she was in constant pain, eating little, and often dehydrated which home hospital visits helped only minimally.  We returned to St. Jude October 26 for a brain scan.

Shockingly, the scan revealed that the tumor had returned with a vengeance.  It covered her brain, and there were no medical options left.  Krisanna, however, didn't give up. She still had a lot of living to do!  With her Pollyanna spirit, she made big plans and celebrated every single day -- even the last in her hospital bed. She died in her "home away from home" on November 4, 2009.

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