We Take the Good, We Take the Bad...

This past week has been so full of emotions.  I hardly know where to begin.  As I shared on last week's blog we lost a dear transplant friend, Emerson Nicole White at the age of 13.  While this has been heart wrenching in and of itself, then a few days later we learned of the passing of another SIOD child, Leart at the age of 7.  Leart was diagnosed in October of 2014 at the age of 3.9 years and and this October had a kidney transplant from his momma, but it rejected only 12 hours later and on November 21st he got his angel wings.

I become friends with these families, first they find us or are put in touch with us by way of the Little Giants Foundation and we share experiences, I answer questions and work to guide them on this SIOD journey as best as I can and each child is so important to me.  We have done so much as a foundation and because of donors and supporters we have been able to send a lot of money to SIOD research funding, but at times like these it doesn't seem to be enough.  It is deflating, yet empowering. Empowering because I know how desperately we need more steady donations to come in to help fund the life saving research happening at Stanford.

Please consider us this Giving Tuesday- Dec 3rd and during our affiliates Matching Funds Program Dec 1, 2019-Jan 6, 2020!  Click DONATE at this site or on our website and if your heart is lead to, click the monthly drop down menu option.  Every dollar matters!

We want to thank the DO GOOD RUNNER group for putting on a charity run at Zipline Brewing Company in Omaha this past Sunday for Little Giants!  It was a beautiful day for a 5K!

The girls and grandmas and I delivered our -what has become an annual tradition the past several years- "Emily's Comfy Pillows" to children battling an illness. We have given these pillows to Children's Hospital in Omaha, UNMC Pediatric Unit, AI du Pont Children's Hospital in Delaware, and now to Angels Among Us- our non profit friends who help financially for children going through cancer treatments and their families.  All of these places have helped us and we are happy to be able to spread the comfort and joy.

The story behind the pillows:  While a patient in PICU back in 2009 (and many times before and since) , Emily’s grandma Shari and her aunt Marsha made pillows to help support her on her side and to cushion her. 

We offer Emily’s Comfy Pillows for the family member to use while they are healing as our way to pay it forward and let them know they are not alone in this fight. Emily has been at UNMC and Children’s in Nebraska, in Delaware at Alfred I duPont Hospital for Children and Stanford Lucile Packard Children’s Hospital. We invite the family to use Emily’s Comfy Pillows for their ailing family member or pass them along to help another child during their stay in or out of the hospital.

 Angels Among Us

 
Leart at age 3.9

A Tribute for a Treasure

I'm not quite sure when our first official greeting was, nor am I sure it even matters as once we began talking an instant bond and friendship was formed.
I remember walking by, on those rare occasions I left her side, and seeing this precious little one with the dark, coal thick hair and the tubes and wires from her body and then seeing her mother in the same chair I sat in catty corner down the hall.  Her mother had the same beautiful hair and the same look over her child as I did.
I had heard a few things of their story here and there and wanted to connect for some reason.  I'm not sure why really because back then I was real guarded of making new friends while our girl lay in a fragile state.  One day the opportunity presented itself as we were seldom out of our rooms and especially not at the same time.  On the PICU floor especially you are isolated for health reasons, yet isolated from what feels like the world at time in your room for another.
When we met I do remember how we both had wanted to hear one another's stories as we had both heard about our children and their chronic illnesses that were baffling doctors.
Over the weeks, the months, and soon what became years, this mother and I shared many moments together.  From happy milestones and small wins for our baby girls fighting their battles to the fears, depths of pain, struggles with "living" in the hospital, to adjustments at home, with friends and family.  We had many late night talks about having chronically ill children and what that carries with it.  We had those hard talks of what to do when, wha to do if and how to do this or that.
Our girls, although having different transplants, different reasons for them and different chronic needs, what was similar was how the two very sick little girls stayed resilient and have been teaching the world- quite literally-about very rare medical issues, paving the way in the medical world and capturing the hearts of so many and so many we may never even know.
Not only did that mom and I become friends, our whole families did.  We'd keep lightly in touch between hospital visits and keep up with one another's posts, get together outside of the hospital when we could ( depending on who had what "bug" at the time).  We celebrated birthdays as we treasured each passing year.
Time was not always good to us, yet we made it work for our chronically ill worlds.  I felt like we had quite the dynamic duo forces amidst us: Emi and Eme (Emily and Emerson) and Erika and Erin- The resilient warrior princesses and their advocate warrior moms.  Two different causes, two different rooms, two kinds of illnesses, two unique stories, yet our missions the same: to teach through our children, to love them to the fullest and to provide the best quality of lives for our daughters.
And now- within what seems like a blink of an eye- one of our late night talks has become reality.
Emerson Nicole White died November 15th at the tender age of 13.
I felt honored to talk to Erika that night as she shared with me of what finally occurred and now as I weep and wrestle with her loss my heart aches for Erika and her boys as their hearts are shattered into pieces that may never be repaired.
I feel as most must in this situation, compelled to do something yet knowing nothing I or anyone else could do can ease their pain.  I realize it is for selfish reasons I feel the need to help as it may bring me some comfort to feel as though I am doing something. I know despite the emotions I am feeling now they can never be enough to help our dear friends we met over a decade ago in this chronically ill world where transplants unite us forever.
There are a group of mommas and their families we met all around the same time and have remained friends and share our own stories together for another time, yet I treasure each one dearly.
If you haven't heard in years past of our friend Emerson, please go to her Hope for Emerson page and see her story.  It is not only remarkable, it is rare and she is beautiful- a life size porcelain doll we will treasure in our hearts forever.
https://hopeforemerson.com/

 One of my favorite photos of Emerson and her momma at the beach, which is one of their happy places.

The dynamic duo OUT of the hospital.  Emily doesn't know yet as in her fragile state right now Joe and I feel this would be too much for her to bear right now.

Brighter Days Before Us

Things are beginning to get brighter.  Emily is not magically cured, or better, or anything, however every day we believe and every day is a new day to be better than the day before.

Last week Emily had reinstatement evaluations for some therapies and they went well and there is a game plan ahead.  I've always felt it is important to keep her moving and as active as possible because like anyone when we are in motion to whatever capacity we are capable we simply do better in our daily lives.  Quality of life is top priority.

Emily's aquatherapy is improving as well as far as her getting more comfortable in the water again.  For those that don't know- she is a fish in water and her not wanting to go under the water is counterintuitive to her nature.  Baby steps.

Emily has another evaluation for her episodes tomorrow and as far as the foundation lots of cool things are happening!  Stay tuned for more on that as I am able to reveal!

Believe

Falling into our new routines

Although each day is a roller coaster ride, it turned out to be a descent Halloween!  Emily had a home school visit, followed by some aqua therapy and LOOK- she got in the pool today- not under water or in the deep end like usual, but she got in! Then on the way home- thankfully close to home- she had an episode so we hung out in the mom van awhile when we pulled in the lane. She then decided to NOT go Trick or Treating and then last minute decided to go! We had "escape plans"- grandma's- a friends house- and the mom van. She had a good time out with her sissy, Joe and I! We went before it got dark to help her mindset. 

Emily is truly such a source of inspiration! The other day she had an episode coming on when we arrived at her aquatherapy session. She used her breathing and focused on some techniques and with some coaxing to go in we made it to the pool where between her therapist and I managed to get her to sit on the steps in the therapy pool and by the end she was feeling stronger. Then we were off to gather some much needed groceries. Her face when trying to figure out which steak she wanted is priceless! Keep powering through our brave, resilient, warrior princess!


Not sure how to take it when the neurologist residents, fellows and attendings are excited to see the #SIOD girl and study her brain some more.
Joe and I are all about helping others and if this can help not only other #SIOD children and children with epilepsy then by all means study away!
Yesterday’s appointment brought up some interesting questions, observations and slight adjustments.
We continue to sit back in amazement at our warrior princess!

Every day Emily keeps pressing on. Here she is working in two different therapies ( one for continued neck/arm pain) and the other to slowly get her comfy back in the saddle again!