Friday, April 13, 2018

The trouble with travel

This is a post I could have and should have written after our trip to Maui last spring—when Curtis was fresh out of foot surgery and barely able to walk. How we managed to even get to the island is still a blur—me, 3 kids, luggage, a wheelchair, one kid in a brand new leg brace, airport security completely clueless about what to do with said brace (“can he take it off?” “We need to call someone to see what to do about it...”). Somehow we all got on that very early morning flight in one piece AND survived (and enjoyed) our vacation. Miracle of miracles. Actually, that and lots of help from family!!
We took another trip a few months later to visit family in another state. It’s a shorter flight than Hawaii, we stay in a rented house vs a hotel room, and we only have an hour time change. All in all, that trip (which we take every summer) seemed to go ok.
I will say this—
No matter what, traveling with kids is a challenge. Whether you have kids with disabilities or not (I have both), traveling with kids is just plain not easy. They get off routine, they are sleeping in a new place, everyone is often staying up later than usual—it’s a perfect recipe for a meltdown. The good news is that as they get older, it gets easier.
Or does it?
For Curtis, this has not been the case.
My “little guy” is only about two months shy of 10 years old and things seems to be just as difficult as ever, if not more so. He has a really hard time with changes in his routine. He struggles with sleep the first few nights and then everyone suffers the consequences in the days that follow. He loves the extra play time, but can’t handle it when we tell him it’s time to come in from the pool or the beach. Add to that the fact that he’s big and he’s loud, and I think you can probably imagine what an epic Curtis meltdown might look like. Stares from strangers don’t help.
What is the end result of all of this? Well, we still travel. I try to plan ahead as much as possible. Curtis loves video games and movies, so we prepare for any travel with plenty of both. He gets “hangry” justs like the rest of us so having snacks on-hand is also a must. Even though he’s almost 10 yrs old, I can tell when my boy needs a good nap and I honest to God force one on him if I have to—for the good of everyone on the trip. Meltdowns? I’m still trying to find the best solution for those, as I am not used to dealing with them much past the toddler stage. It’s hard to know exactly when or why they will come. That’s the most frustrating part about them. It can be really difficult—for me and his siblings (and everyone, to be honest).
I feel like there is still so much I have to learn  about my boy. What sets him off? What can I do to prevent certain episodes of anger or frustration in him?
I don’t travel very often without extended family there to help. It definitely takes a village!

**Curtis is being admitted to Rady Children’s on Monday, 4/16 for a 72-hour EEG after some suspicious episodes a few months ago. Hoping to get a few answers/more insight...



Tuesday, March 20, 2018

Battle of the Brace


“I hate this brace.” 
“What do you mean you hate it?”
“I just hate it. I hate wearing it. I just want to be normal—Like the other kids.” 
And my heart breaks. 
“Wait, buddy, did someone say something? To you? About the brace?”
“No. I just hate it. I hate that I walk different.”
I have him come over to me and I pull him into my arms. I rest my chin on top of his head...
“OK. I know. But you know we are all made different, right? So you are made different than me. I’m different than JoJo. She is different from her friends. So, really, it’s normal to be different. And having a brace is just your normal.” 
I pull him in closer. “You’ll be OK, lover.”
“OK. But I still hate it.”
He walks away. 
And I get it. I hate it, too. But it’s not the brace I hate. I hate that he feels like his “different” isn’t “normal”. We all feel that way about something about ourselves at some point, don’t we? (Or maybe at many points). But for him, I know it will be an uphill battle. 
I hate it. 
I hate that because he can’t run as fast as the other kids or because he doesn’t walk the same way, he feels like he belongs in a separate category. Normal vs not normal. I hate that people will judge him and make assumptions about him. 

I hate it because I look at him and I just see my little boy. Different, yes. But he’s mine. 

And, besides...we don’t really mind different over here. 

Actually, we love it. 



**It’s been almost a year since Curtis’s cast came off after surgery and he is still in his AFO almost 100% of the time. He is soon to be 10 years old (yikes) and we anticipate that after this brace, which provides a lot of stabilization for his ankle, he will transition into a carbon fiber AFO for his drop foot. So...we will need to "embrace the brace" for a while longer.