It’s been about a year since we knew about Kaelyn’s underlying condition of Spinal Muscular Atrophy (SMA). When we knew about the full extent of what the disorder would do to Kaelyn, it seems like the world crumbled down. We never felt so lost and helpless. If I break a leg, I know I can put a cast over the leg, rest and the bones would heal and my muscles would build up strength if i exercise it.
For Kaelyn, we couldn’t help it, no matter what we do. It is probably a matter of time. What we could do is just to do “preventive maintenance” for her, which means very frequent visits to therapists. We try to keep her healthy and not too exposed to the risk of catching a flu or virus (It almost took her). But these are only so many things we could do to delay, if there are any, the onset of her disorder, which means she will lose control more and more of her muscles, and very little, or no muscles will be spared. This will mean she can’t even sit up on her own, swallow and breathe adequately.
When such things happen to anyone, everyone will ask why them? We are human. We were in that stage. Knowing we couldn’t change the fact, we try our best to not think about her disorder and live life as it comes. Hence I started this blog so that I can look back at some of the things we done before and say “HEY Kaelyn did that before!”
We are not the best parents out there, but we try as much as possible to give Kaelyn the live of normal kid…but with her Bipap Machine, oximeter, feeding pump and a oxygen tank in tow 😛
I am thankfully we were able to find parents of kids with similar condition or needs as Kaelyn and are willing to share and support us emotionally in the journey of taking care of our kids with special needs. One of them shared with us that God gave these kids to us because He felt we will be the best care giver for them.
I guess all we need to do is just to love them and make them the happiest kid in the world as much as possible.