Reed Update: Over the summer Reed started to complain of more leg pain this tended to be when we were in the car for a long time or when he was on the tired side. Usually, the pain would be so bad that he would cry and was inconsolable he would work himself up so much that he would become very stiff and very sweaty. About the only thing that would work was to get him out of the car seat and since that isn't always an option me crawling into the back seat to hold his feet up. If we had it we would give him some ibuprofen and with time it would kick in and help. Out of frustration of not knowing what to do, and what was causing the pain, we thought maybe growing pains, maybe his legs were falling asleep in the car seat or maybe it was just a way to get our attention when he didn't want to be doing something. We thought maybe a step stool for him would maybe help, Amazon to the rescue we found this footrest made for car seats and so far so good no problems yet. We haven't had any real long trips yet but also no issues yet and Reed was very excited about the new attention to his setup.
Cubbie has started back up again and has brought lots excitement back for Reed, this is papa and his special thing. Every Wednesday night papa takes him to church, he wears his cubbies coat (as daddy likes to call it), he always reminds us to remember his offering. They sing, learn about God, play games, do a craft and have a snack. Reed loves it!! But I want to be real here as much as he loves it I struggled last night with it. Last night was parents night and watching Reed, watching the other kids run around was hard for me. We try so hard to make sure he is involved and included he doesn't see the difference yet or at least he hasn't indicated that he does or that it bothers him and maybe it doesn't and it never will, I hope so badly that is the case. But as parents watching him and seeing the struggles, seeing the difference seeing what this disease has done to him compared to other kids his age is hard. Usually I can look past the wheelchair I can look past the difference and just see my boy but I struggled last night I broke down I cried for our boy, I was angry last night, why him, angry at God, and as selfish as it might sound I hurt for us as parents for all the dreams we might have had for our son that might never happen that might never make sense for him. We will always fight for him we will do what we can to keep in involved and part of things but the truth is that sometimes that is not a reality and I hate that. But within those bad moments, time passes, Jesse let me cry he comforted me he reassured me that this is okay, that we will give Reed everything we can that we will find him a cure, we will make sure that he is happy! And I woke up this morning knowing he is right we will do all these things and I know that as long as Reed is happy and having fun and enjoying life then we are doing our job for him.
So mama's and daddy's out there keep up the fight for your kids, stay encouraged, you are doing right by them, teach them to love and ask questions, teach them to understand others as they are. You are all doing an amazing job and you got this!!
