Its World Down Syndrome Day again...and every year I can't help but think a bit about this journey we're on. This year has been tough. But tough in a different way. Yes, James still has delays and medical stuff, but in some ways that stuff seems like the "easy" stuff. This year has brought a new set of challenges. Just as I'm sure each year does for any kid. But this has been the year of being left out and wondering where James and I really fit in. Where you wonder if the choices you're making are really the right ones. But yet there's no guide to let you know if it is the right choice. If it is what's best. Trust your gut everyone tells you...but sometimes its not that simple. Sometimes your gut is so twisted you have no idea what its telling you.
Every time I see birthday invites hanging from the mailboxes at school I cringe on the inside. I'm not an idiot...yes I see the little envelopes and I don't need to be able to see inside to know what they are. And not once has one hung from James' mailbox. He hasn't realized yet that he's not invited. But I do and honestly that hurts worse than any news any doctor has ever delivered. That stuff I can take. And even though James doesn't realize he's not invited to play dates or birthday parties he is realizing he's being left out. I watch him stand outside a group of friends waiting to be asked to play. He runs to the teachers not his friends when he gets to school. And most mornings he doesn't want to be dropped off in his classroom. He wants to go to the other preschool room where the older kids are. He knows these kids are his friends and "get" him, even if he can't say that.
But the best part about right now is that he can say a lot! A lot more than I ever imagined he would be able to at 4. We've held conversations, albeit slow and guided, but back and forth conversations. I love getting to peak into his little world! But along with that comes comments from other parents about how they can't see pictures of your kiddo or hear about how your child talks because it makes them feel bad about where their child is at. And I know this is an age where a lot of kids still can't talk so its touchy. But now your kid isn't included with his typical peers and you're made to feel like he's "not disabled enough" for support groups or disability programs. The comparison game rages no matter if your child is typically developing or not...there are always comparisons...its sucks...but that's not going to change.
Needless to say its been a challenging year. But challenges are what I live for. They're what I willingly take on every time I click that damn "register" button for another race. And so to the challenges of raising a child with special needs...I say bring it on! Some days are 50 milers and some are 100s, some bruise you and try to break you, some bring out ear to ear grins that make your cheeks hurt from smiling and leave you in stiches from laughing. Challenges are what make us stronger, they're what teach our kids to stand up for themselves, to push their limits, to be successful...to be champions. So here's to a year full of unicorns and rainbows that have brushed off the dirt and embraced their scars!
|celebrating Pi Day|
|We seriously got a sunset that amazing!|
|Staunton - a little piece of heaven|