Some days are hard. Today is one of those days. I took F to a new physical therapist today for a new evaluation. He has been in PT before but it is time again. His endurance is low and it really effects his life. He can't walk more than 10 or 15 minutes without experiencing pain and needing a break. His core, hip, and leg muscles are weak and he is the master compensator so he uses other smaller muscles to compensate to get him from point A to point B. It gets the job done but those muscles tire out quickly and then he starts having pain in his legs and feet. We experience the world by walking for a bit and then he sits down to rest for a few minutes, we walk a little longer, and then he sits downs again. We usually get there eventually. It is his norm. He doesn't complain or expect to be the first to anything. Though it makes me sad to see him sitting down waiting for the pain to subside while watching other kids play, it doesn't seem to bother him too much. Regardless I and his doctors agree that it is time to work on the endurance and see if the weak muscles can be strengthened.
Today was the PT eval by a new PT which always makes me a little nervous. You never know what you are going to get. Luckily I really liked the PT and I think he has a good treatment plan. He would like to see F three times/week for a month and have us do work at home each day for the month and then reevaluate. I love the idea of "hitting it hard" and can't wait to see what happens. Timing is good because F is out of school right now so we can really focus on his physical therapy. He said that F functions exceptionally well for having as many weaknesses in as many muscles as he does. And honestly that made me proud because we have worked SO HARD to keep F active when he would rather avoid many activities. We take him swimming, go Pokémon hunting with Pokémon Go to encourage him to walk, jump on the trampoline, he rides his bike, we take him to parks to play, etc. It is part of our daily lives to find an activity that he enjoys and encourage him to be active. I know for a fact without our encouragement and dedication to him being active he would be in a much worse physical position.
But unfortunately my excitement about the gains he could make in the next month was quickly tempered by the realization of how many expensive it is. Three copays a week. On top of the copays we already pay for doctors appointments and prescriptions. And oh yeah - F SHOULD be in both Occupational Therapy and Speech Therapy right now but we are taking a much needed sanity break from those. And double OH YEAH - W recently had a speech evaluation and the speech therapist recommended SHE start speech therapy once a week. If we had both kids in the therapy they have been recommended plus take F to the other appointments he has it will cost us $280 a week with "good" insurance. Insurance that I feel obligated to say I am so thankful for because I know that many people don't have the insurance I have. And the thought of that terrifies me. But at the same time it angers me that we are in the position we are in. We planned, budgeted, and saved before having kids. We had set aside an emergency fund for unforeseen medical bills. That emergency fund was a drop in the bucket of the ongoing flow of bills. Medical "emergencies" don't usually drag out for eight years I guess. So today is a hard day. I know we do a lot and my God I know we have seen so much improvement over the years. I couldn't be more proud of F. But it is hard because I feel like money is keeping us back from providing him all the therapy he needs because we aren't talking about short term therapy. We expect speech therapy to be needed for many years and his physiatrist thinks he will need physical therapy every time he grows significantly. I just hate that I worry about the cost of everything because I feel that isn't fair to him at all. So I sit here worried about the juggle. I worry about the years to come. And heaven forbid - what if I die? We get insurance through my work. I seriously worry about what my family would do for insurance if I were to die or couldn't work anymore. I have considered looking into other states and wondered if F could qualify for assistance in other states. I would leave the area I love if it meant my family had better health coverage. I have fantasized about moving to another country where healthcare is a right. I seriously can't imagine my life without the constant worry of medical bills. What the hell would I worry about? Would I worry about my hair getting gray? My children not knowing a second language? GMOs?
Back to reality where I am not concerned about GMOs or my hair going gray. We will get through this round. We will scrimp, juggle, and carry on. We will see F improve and be so proud of him and know that it is all worth it. We will hope that when he is a parent he won't have the same struggles we have.