Well, I thought we had covered all the bases with our children’s health. We have had OT, PT, speech, ABA, feeding clinics, enduring weekly medical treatments, rare diseases, scheduled surgery, emergency surgery, endoscopy, x-rays, barium swallows, MRI’s, blood tests and those are the ones with in the past year. You might think that with every new diagnosis or treatment I might fall to my knees asking why. Why my children? Why would God, or anyone, bare these burdens on my them? Why could He not put them on my shoulders? Luckily, my knees and shoulders are virgins to the ground and the burdens. I keep it together by moving forward. I don’t have time, patience, enough sleep or enough coffee to sit and consider who to blame. I hyperfocus on being the best mother I can. I need to hold their hands during medical treatments, wipes their tears after blood tests, and try to find the right words to explain to them why they have to do these things and other children do not have too.
I had to dig down again and find my brave self. A few weeks back SB was seen at the PT clinic at our new duty station. They told us that further PT would be useless due to her condition. It was confusing, as she just had a full year of PT and we were told nothing further could help her by two different specialists. But did you hear that? That little voice inside your mommy head saying more can be done, something different could be done, and the nagging feeling you need to speak up. But, I didn’t. I sat there and watched her struggle through PT; making progress only for a few hours afterwards and regressing until the next appointment. The short term solution of one hour of PT a week seem fruitless and ineffective. I knew eventually this day would come. That day was last Wednesday when SB got leg braces. Thankfully, we aren’t talking Forrest Gump here. However, there has certainly been a learning curve.
For starters, while in Hawaii, we were told that A) she didn’t need braces because they wouldn’t help and B) Tricare would not cover them. PEOPLE, TRICARE COVERED HER BRACES. Yes, the PT wrote a note with the exact type of braces she wanted SB to have. I took the note straight to her PCM, who then wrote the prescription and gave it to Tricare. Two days later we made her initial fitting appointment. Now, we have a lovely set of princess leg braces.
Next, we realized her little ankle socks were not going to do the trick. I had to invest in those out of fashion crew socks to provide her with more padding around the top of the brace. Luckily at two years old she is not much of a fashionista.
Even though she did not mind wearing the new style of socks, she did have something to tell us about wearing the braces. It was more like she had something to show us as they were launched across the garage while I was trying to put them on. There was screaming and crying; she thought I looked silly. However, after a positive reinforcement of Frozen stickers to decorate her new super princess shoes, we were able to get her braces on and get on with our errands.
Getting her shoes on over the braces was another lesson we had to learn. Velcro shoes do not fit nicely over the braces. We were assured by the fitter that regular shoes would work. But we figured out on day two, she has fat feet and it was like was like trying to shove a stuffed sausage in her shoe. I was irritated as I had just bought her Dora light up shoes the previous week, and realistically had no money to spend on another pair. I thought the solution was a larger size, but that didn’t solve the problem either. Luck had it that I wasn’t alone walking this new path. A family friend had stopped by the next afternoon to chat at the same time I was trying to get shoes on the kids for some outside time. She walked up and tried to help me get SB’s shoes on. Coincidentally, she had another friend whose other child wore the same braces. My friend told me how I would probably never get her into a pair of Velcro shoes and to try lace up ones. Friends, she was right. Lace up shoes are so much easier to get on and off. Just not easier trying to get out the door when 3 out of 3 of your children can not tie their own shoes.
Nevertheless, it is hard not to question why disheartening things happen to our children. Hard truths and realities are easier to accept when you have a viable answer to your question. But I never have asked the question. And you shouldn’t either. Simply ask “what do we do now?”
I often think of this passage when I am facing new or confirming a diagnosis. It helps to remind me how strong I really am and that I am not alone. Oddly enough, I never even realized it was a passage out of the bible until a few years ago.
Please remember this is for personal use only.