Nathan has had a pretty rough January. He came down with the flu which kept him home for several days from school. He developed a horrible cough that kept him up for a couple of nights in a row. He would cough so hard he could not catch his breath and was begging us for help. It was a horrible feeling not being able to help him. We took him to the Doctor twice over the course of this illness and received antibiotics both times, cough pills and an inhaler. We are finally starting to see improvement and he is feeling much better.
A couple of weeks ago we went to see a rehab specialist about mobility issues. Lately, Nathan has been having a much harder time walking without assistance. He used to use his cane very well and now he doesn’t use it at all. He use to walk around our house with no problems and now he wants to hold on to someone every time he needs to go anywhere. Nathan being a very social kiddo loves going out to dinner or to stores. He refuses to go anywhere because he is “afraid he is going to fall”. He begs for his wheelchair and oncr we agree then he is excited to go! At first Jay and I were reluctant to let him use the wheelchair too much, but have come to realize that his body is telling us something. Whether physically or emotionally, we are not sure, but it is our job to listen. The wheelchair we have now is a standard issue from a medical supply store and does not offer proper support. Hence the reason for the visit to the rehab doctor. He has an appointment at a wheelchair company to be fit for a custom wheelchair. This was not an ideal thought for us, but again, we are paying attention to what Nathan is saying.
Tomorrow, we will meet with his geneticists for his normal follow up visit. This one appointment gives me more anxiety than I can express. This is the doctor that delivered Nathan’s diagnosis. He is a wonderful doctor who I respect very much. But everytime I sit in his office it is like traveling back in time to June, 2015. There are moments were I feel like I blackout and do not even hear what he says. At this point, there is nothing they “do” for Nathan. It is merely to track his symptoms and progression of the disease. I am afraid it won’t be a fun appointment tomorrow as I can see with my own two eyes what is going on.
Sorrow is the best word I can find today to express how I am feeling. I had a call from his doctor today to give me a referral to a company that builds ramps into your home. My son is being fitted for a wheelchair. We are having to start thinking about things like converting my van and remodeling our home. If you would have told me this would be our lives 12 years ago, I could never have imagined it. So today I am sorrowful. Tomorrow, I hope to be better, but am learning how to allow myself to feel what I feel. I have shoved all my emotions down for so long and put on a happy face that it has taken a toll on me physically and emotionally. I can’t do that anymore.
Thank you to all of you who continue to read our journey. To those who share our story so that we can continually spread awareness. To those who send a quick message just to let us know you are thinking of us. It means more than you know and we are so thankful.