Dealing with the heat

The hot weather has hit us around here. I usually am thrilled for the heat(because I love to tan), but it just feels hotter than normal.  Maybe humidity??  We can all change into something cooler when we are hot, but not Ryan. 
I forgot about how hot he gets in his brace......or maybe I blocked it for this very reason. 
There is no way around it either.
He has to wear a knit brace shirt under a hard plastic brace that does not allow any air in. And some times a tshirt over that.  I am trying to get him to just run around in the brace shirt and brace.  It sure will allow for spreading awareness....right?
For you Scoliosis Mothers you know exactly what I am going through right now.  Summer time in a cast or a brace is awful.  Maybe not the brace so much because we can take it off, but our main purpose right now with Ryan is to KEEP IT ON!!!  It breaks my heart that I have to tell him no.  And he comes to me often asking to take it off now that it is getting warmer.  All I can do is remind him that he would have to go back into a cast that can NOT come off.  I remind him he would not be able to take a bath and would not be able to swim/play in water this summer.   He quickly agrees to leave it on, but within 15-20 minutes he is asking again.  He has two choices in the matter.  Deal with the heat or stay indoors.
Neither are fun when you have a brother that has no worries in dealing with this.  I try very hard to make Matthew understand what Ryan is going through right now.  And he does for the most part, but he gets upset when Ryan decides he wants to play indoors.  Its no fun playing outside alone for Matthew.
Many people look at Ryan and see this happy and healthy little boy running around and having fun.  And usually with his brace on.  Not many people realize all the heartache and struggles we encounter because of Infantile Scoliosis. And most importantly what Ryan goes through dealing with it.  Don't get me wrong we are extremely blessed that he has not had to have one surgery for his scoliosis.  BUT it is just hard sometimes. 
I personally do not think it matters what the degree of the condition is.....it is there and we have to deal with life differently with Ryan.  Our whole family deals with this. I think any parent of a child with any condition will agree you make it your life and stay as positive as you can, but things are different.  The brace consumes me some days.  I am constantly watching the clock for that magical time when the brace can come off.  And then watching it again to put the brace back on.
This is when I really dislike Infantile Scoliosis and want to scream to the world, "THIS BLOWS!!!" Or "Why can't pediatricians catch this EARLY?" Or my all time favorite....."WHY?!?!"
I don't hate it because it has taught me so much and made us all stronger.  God gave it to Ryan for a reason we do not know yet.  A reason that I know without a shadow of a doubt is a spectacular one!!!  I have to trust in God and His plan.   I know as each year passes I will see little bits and pieces of His reasons in all this.  I already know that Ryan's personality can handle this.  Only God could have done that.  For that I am happy and eager to continue down this road......Ryan's walk with Infantile Scoliosis.  Many on my support group describe this journey as a roller coaster ride.  Major lows and awesome highs.  When you are at the bottom your stomach is churning with anticipation because you don't know what the next turn will bring.  You make it to the top and it is pure joy and excitement.  Just as you are enjoying that high you are falling down....very low again.  And then it does it all over again.  DOWN and UP until you can't take it anymore and want to get off this stressful ride.  Reality sets in and you realize you have no choice in the matter and have to "deal with the heat".
OK so I kinda got off a bit, but the heat I guess just brought it all out.
All I can do is try to be positive and find fun and COOL ways to deal with the heat.
Popsicles, ice cream, snow cones, water hose, swimming pool, etc. to name a few.