After much preparation, my mom (lovingly known as Grandma Jilly), all three boys and I set off for Long Island to get Ollie new leg braces. We took a full 6 days to travel, get stuff done, and play… and boy was it glorious. And fun. And hard work. And miserable. And amazing. I tried my best to put it up on social media so that people could follow along, but I found myself waffle over what it was portraying. Posting happy pictures of us enjoying New York and Long Island is accurate… partly.
Putting up pictures of me with a migraine on a train ride home while I ignore my kids would be accurate too but it might illicit pity… not looking for pity… chose not to put a picture of that one up.
I did put up a picture of the doctor we see and carefully mentioned that if anyone has a child that needs leg braces, this is a great place to go… however this might make people feel jealous if they can’t go see him. But how do I get the point across that I think this doctor is magic and parents should make every effort to get there- without also giving the impression that our family gets to just “choose” to go across the country- easy peasy. While we do CHOOSE to do it, it’s not easy-peasy. It comes with uncomfortable sacrifice and significant loss of funds. It slows us in our process to be able to advance forward financially in other ways.
But what we gain from it… gosh I can’t even express… watching Ollie walk because he’s in leg braces that are so carefully hand-crafted to his needs bring emotion that I can’t begin to express. When he finally slipped them on and began learning to walk around I couldn’t help but cry and feel… what’s the word?… victory. It felt victorious.
It’s a scary thing to put precious, hard earned money towards something that you hope is going to work. It’s nerve-wracking to go across the country to buy AFO’s when there are 5 offices within 5 miles that offer to make them for you IN-network!
“Wow- you have to travel all the way to Long Island to get leg braces for Ollie?!,” I hear on a regular basis…
Well… no… and yes… yes I have to.
To what length do we all go for our children? What cost is too much? There are limits… I continue to be jealous of those that travel to California for the therapy we love. We stay in Oregon for it. The guru’s down in California are just simply not in my price range. “Fundraise,” people will encourage. Maybe some day. But my threshold currently has me set right here.
Parenting is a beautiful, weird, difficult, joyful, painful thing.
We make choices daily that affect our children and their future.
Making those choices for a special needs child are unique simply because they’re not as common- and they tend to be more expensive whether it be cash or time (fighting with insurance!).
But all in all… as parents we all have a billion-cazillion decisions we have to make on a daily basis. And what I’m appreciating is this… each of us know our children best and we know our thresholds best. If in your gut, you as the momma know you have to do something… follow it. It’s a God-given intuition given just to YOU! If your threshold in some area (energy, mental stability, financially, etc.) is tapped out and you can’t- and your gut isn’t telling you to push… follow that instinct! Let the expectation go. If it’s necessary to your child it will keep calling you back. Trust your gut and relax.
No one else has your life. No one else has your kids.
Your kids have YOU- and that is GOOD.
Be confident and live.
You are loved.