now to most of us, we just move our toes and think nothing of it. some people may have read the above paragraph and were not able to follow directions. they may not be able to look at their legs because they are blind. they may not be able to look at their legs because they simply don't have any. and they may not have been able to move their feet because they are paralyzed. if my son were to read this blog, he'd be one who wouldn't have been able to follow what seems like simple and even silly directions of "move your toes".
So, my 4 year old can't stand. He is paralyzed from his waist down and has no movement or feeling in his legs. He army crawls to get around and uses his wheelchair. he is unable to walk or stand but he sure wishes he could.
today we are celebrating a boy who can stand. at his most recent doctor appointment he was given a prescription for his THKAFO brace (trunk, hip, knee, ankle, foot, orthosis). we took the script to an orthotist and each one of joshua's feet, legs and his entire upper body was covered in plaster to cast to get a true mold of the shape of his body. joshua lye their so patient doing everything the orthotist asked him to do "roll over on your side, now lay still, ok lay your arms out to the side, flatten your back..." this went on and on for almost 2 hours and joshua never complained. he is such a trooper. so the molds were done and now it was time to pick a pattern for them. he gave us the sheet with the different options on them. you could pick a plain solid color, soccer balls, camouflage and batman...DID YOU SAY BATMAN? Joshua was sold. Batman, please. "I'd like a Batman brace." Joshua had the opportunity to meet Batman when he was 3. He had an appointment one day at a children's hospital and after a long day at the hospital as we were exiting the building there stood Batman himself. The Bat mobile and the whole deal. Some man has dedicated his life to being Batman for sick children. He visits hospitals world wide just to brighten their day and make them smile. I think I have a crush on Batman....just sayin' ! Anyway, this is how Joshua started liking Batman. Finally, we left the bracing office and had to wait a couple of weeks for them to be made.
in these coming weeks, we discussed often with Joshua, as a family, that he was getting new stand up braces and how special this was! we were encouraging him and getting him mentally prepared for the new part of his life. wearing a brace. being big and tall. learning new things at physical therapy that we can do in a brace. he was pumped.
finally the day came. we went to the appointment and were sitting in the waiting room. They called our name and there his orthotist stood with these huge stand up braces. i thought to myself, oh no-those are not right. those are way too big. i was feeling worried. thank goodness, i was wrong. we laid joshua in them, got them all strapped and secured and he fit them like a glove. we put him upright and for the first time I saw my little man big and tall. proud. he is so big. he is always either laying on the ground or sitting in a wheelchair and i never knew he was so tall. what a neat thing. joshua was grinning from ear to ear.
after a few minor modifications we were all set to leave. went home and wore stand up braces all evening. he was making a sound i had never heard before. it was a sound full of joy. he was so excited to be up. he could see and touch the top of our bar stools. he could stand up and lean on a chair. we opened the refrigerator for him and for the first time, he saw the top shelf of the fridge. he kept making the noise. almost like an excited moan or squeal. it's indescribable. his sisters gathered round, carrying him from spot to spot in his braces. we took him outside, let him stand up at the push mower. then the noise came again. it was almost the noise that an excited child or baby would make if they could not speak. his big sissy let him stand on a ladder, and shoot a hoop in the basketball hoop. i held his hands, like a mother of a 1 year old learning to walk holds her child's hands. i did this for the first time. he was looking up at me, so proud. i sat down at a chair in the garage and instead of him tugging at my ankles to get my attention, he stood with his sweet little boy hands on my knees. we were almost at the same eye level now.
what a special day. we sat outside drinking coffee and letting joshua explore his new world until well after dark. and suddenly, neighbors were appearing for varying reasons in our driveway. we never have this much company or visiting neighbors. it's like the neighborhood could feel our excitement and didn't want to miss it. God knew we were celebrating, he must've spread the word. as neighbors would stop for some random reason, they would look at joshua, who they normally see wheeling up and down the side walk in a wheelchair, and just smile and celebrate with him. it felt like one of those bible stories where people in the village hear of the good news and want to be apart of it and witness it.
these strangers were so kind and excited for joshua. told him he was a big boy.
this is the best i could do putting our experience into words. it's really something that can't be retold. i am so thankful for this day, his sweet sisters and all of joshua's fan club.
