It could have turned out differently I suppose, if I’d allowed myself a companion as I ran the rare disease gauntlet with my son.
We are so grateful for anyone who steps into our lives and wants to help make his sphere a little friendlier, a little more appreciative of all he has to offer.
One thing I’ve come to realize is what makes a “happy ending” (in real life) is that it’s really just a beginning.
So when I hand over my son's tiny frail dying body, know that I trust you.
Parenting a child with a disability like Down syndrome requires courage, patience and love in what can sometimes seem an impossible battle. But it is a battle that can be made considerably easier to fight if you remember that you are not alone.
The other hard part? Thinking it’s all “normal” and that we must be bad parents for not being able to get it under control.
As parents, one of the more primal responsibilities we have is to feed our children. To be seen as deficient in that arena is to call into question our basic success in caring for them.
I wish I could tell you I was optimistic about the New Year, but given the overall shitty nature of this past year, I’ll try and keep my hopes grounded in reality.
Today, his teacher unknowingly answered my supplication in the form of a manila folder. A folder that said, “I see you. And you are loved.”
Katie launched a campaign called “Changing the Face of Beauty, ” to transform public perception of people with disabilities by including them in advertising and media.