It meant that I would have to further put in writing the awful news we got on Monday. Deep breath and here we go...
Not going to do the daily recap that I've started to do lately. I've spent many more hours awake than originally thought. Working a bit on Project Life but most of my time I've poured into this social media management project.
We learned that one of FMIL's former students had suddenly passed away on Monday night. We had stayed in touch with the family and this little girl was very special to us and everyone she met. Needless to say, we were heartbroken when we heard the news.
I'm still processing everything and while it was to be partially expected- nothing ever prepares you for the moment it comes true. A part of me really cannot believe that she is gone, even if it's to a better place.
Her family was in the midst of a fundraiser to purchase a wheelchair van and her mother wrote about their story on that page that better describes the situation prior to what happened that awful day.
"Hello everyone! My name is Samantha, mother to the fabulous PAIGE! Let me tell you about her! She is, first of all, AMAZING!
Born with a neuro-muscular disease called Spinal Muscular Atrophy (SMA) Type 1, Paige has been a brave girl her entire life; diagnosed at the age of 1 month when she stopped breathing, up to the "old lady" she is now at age 8. When she was first diagnosed I was told that SMA kids do not live past age 2! She was unable to swallow by age 6 months and received her g-tube to supplement nutrition. As SMA effects the respiratory system, at age 8 months Paige received a trach and ventilator to assist her breathing when she was no longer to do it on her own.
I know, I know, a lot to put on a little girl who wasn't supposed to be here right? The hard and terrible thing about this disease is... she's not effected mentally at all and is actually very bright and advanced for her age- like most other SMA kids. She is unable to move or eat at all, but uses an augmentive communication device that she uses with her eyes to voice her needs and wants- just like other kids, some of the things out of her mouth just blow me away! haha!
Paige has been to the hospital off and on her entire life, but has not (knock on wood) been hospitalized for over a year now! And seeing as Paige is having no plans on leaving me, our next obstile is transportation. Medical appointments, wheelchair adjustments, therapies or just plain-old-going-out is becoming more and more diffucult. At this time I have to transport her in a car seat with a homemade adaptive head strap- NOT the most ideal- but as independent women we need to be able to travel at will!
As she has grown into my lovely big girl, I am reaching out to the public for assistance. I have done a lot of researching and am looking for a newer handicap accessible van that I can use to transport her for many years to come. The additional need for safety while traveling has become more prominent then ever and Paige traveling IN her wheelchair is the safest option. Even if I modify my van for a lift or purchase a used wheelchair van the price is about the same- crazy right?
Any donation is wonderfully generous and much appreciated! Thank you for taking the time to read about my perfect Paige. Even if you don't donate, I'm so glad that I could share her story and get the word of Spinal Muscular Atrophy out there- #1 genetic killer of children under 2.
Thanks again! Samantha and Paige"
She was a phenomenal little girl that I had the honor of knowing with her sassy personality and quick wit.
I loved watching her tease her mom and nurse (and anyone else) with her state-of-the-art eye-gaze talker. She'd be so patient with me as I tried to figure out how she was communicating with me with her eyes and vocalizations.
My heart dropped and ached for her every time we heard that she was in the hospital again. It would always been for weeks with too many close calls.
Her passing was still a surprise, but from what I understand, it was swift. I would hate to think of her suffering with some illness that dragged on. She was always such a fighter. We're all thinking of her dancing the way and keeping an eye out on her mother, unborn baby brother, and rest of her loving family now. We'll be attending services next week. My first in person, let alone for a beautiful child. Nothing else to do but mourn, pray, and love in her honor.