We’ve been at a lake
house the past few days with some friends.
It’s been a wonderful time, as my
friends brought their two teenage daughters who love children. My children love
their daughters. It was a perfect match. We played games, fished, laughed, and ate way
too much. It got me thinking, though. Since Jared was first diagnosed with this
disability, there hasn’t been a single day when I haven’t thought of it. Not
one day. There’s barely a conversation I have with my child, when I don’t
consider how his brain is processing things. It’s a natural occurrence. I don’t
think I’m over-analyzing; it’s just at the forefront of my mind. I guess it’s
like if you meet someone who is hearing impaired and reads lips, you kind of
wonder if that person can understand each word you’re saying. Thankfully, this family knows of Jared’s
disability, so when I ask him to repeat what I said to make sure he understands,
it doesn’t come across as too “control-freak-ish”. They know I just want to make sure he can
hear what I’ve told or asked him.
I think, in life, we
often want to find people who “understand” us. It’s really nice to have friends
who are also confectionery artists, who know what’s like when the humidity hits
your fondant and your cake reacts differently than it did the week prior. Or,
it’s nice to know that other folks often have issues with air bubbles in royal
icing. If I discussed these things with my day-to-day friends, they’d probably
just nod and say, “uh huh” or something. They don’t know the physical and
mental pain of working on a cake for 13 hours. But, that’s okay. This is the same with parents of APD kids. My
friends probably couldn’t even fathom what it’s like to constantly - I mean,
constantly - be thinking about your child’s brain whenever he’s interacting
with anybody. They don’t know the heartache my son and I face, on various days,
when certain things occur. (Of course, my heartache is because I see his
spirit breaking). Each of us is walking our own journey in life. I couldn’t
even fathom how my beautiful cousin has watched her little girl battle with “Natural
Killer” cancer and been giving death sentence after death sentence for years. She may never find anyone who truly "understands" because it's such a rare form of cancer than no one in the US, and certainly no one her age, has ever had it.
Even though my friends
might not understand what we go through, as a family, because of this “incurable
disability”, they are here for us. As more and more folks are learning
about APD, more and more kids are being diagnosed with it… instead of
incorrectly diagnosed with other disorders. And, what does that mean? More parents,
who can empathize with each other, are popping up. More parents, who don’t go
one single day without considering their child’s brain activity, are out there.
More parents, who see the chipping away of their child’s self-esteem on a daily
basis, are looking for answers. I wouldn’t
wish this on any child or family, but it sure is nice to know there are folks
who understand. Thank the Lord.
No comments:
Post a Comment