How do you accept being told your child may not walk, and if they do, they may still lose that ability? That there is no way to stop what could happen to her? That she could experience optic nerve atrophy and potentially lose her vision. That spastic paraplegia, which could be painful, is a strong possibility and that no exercise, strength, or PT could prevent that from happening. That the atrophy in her cerebellum may not get much worse, but could, and her intellectual abilities may be affected as well. That seizures are common and further damaging to the brain and that swallowing issues and more could lead to respiratory distress. That there is even more, some things unknown, and that sometimes this can even be fatal. That the best thing you can do for her is try to keep her from injuring herself when falling.
How are you suppose to feel when a doctor tells you that YOU will be directing this, leading the charge, because even the medical professionals that you typically would turn to are not familiar with KAND because it is so rare that you will likely have to educate them about it.
How do you accept this when you look at her and see the most perfect, happy, loving baby girl that you would do literally anything for?
Most parents would throw themselves in front of a train to save their child if they had to. But what if you knew there was a train and you just couldn’t see it. You couldn’t stop it or push your child out of it’s way?
This is real. This is something my brain knows is real, but my heart refuses to accept. I will always have faith that Colbie will be able to overcome this even if it takes a miracle.
We know what lies ahead will take much more energy and patience than we had envisioned and that is okay. The extra support she will need is not a problem. Being with her and taking care of her brings us endless joy. Regardless of how challenging things may get, we will do anything we can for her.
What is NOT okay, is Colbie ever suffering in any way if there is anything we can possibly do about it. There may not be, but we won’t stop trying.
We had a hard, sleepless week last week and realized quickly that a simple cold with a mild fever will be much scarier now. That it will be difficult not to question every new concern as a potential symptom coming on. I am already beginning to get used to that pit in my stomach feeling not going away.
I don’t mean to sound hopeless. There are definitely moments when we break down, but we have so much hope still and she continues to inspire us too. We appreciate the outpouring of support we have received. I had no clue how many people would reach out with encouragement, offer great advice, donate, and more. That has meant so much to us, thank you. I want this to be an honest place though. I’ve experienced grief and I know this is similar, though also very different. I know it’s a process. This is hard and as much as it feels like it isn’t, as much as I don’t want it to be, this is real.
On a more positive note we have already raised almost $1000 for Kif1A research through this blog and through Facebook donations without much effort, thanks to so many of your generous hearts! I can’t wait to see what we can accomplish once we have our heads wrapped around everything a little more! These totals are not reflected here since we just set this donation page up, but we hope to be able to join in for the last two weeks of the Super Hero challenge and help the KiF1A.org team reach it’s goal of $50k by the end of October!
Practicing with her new bar that Daddy and Granpda made (plus a little rest break mid-crawl). :