Here I was, trying to take my daughter to doctor appointments and not only could she not walk on the bottom of her feet from nerve pain, but she did not even have the energy to walk into the office, let alone the energy to get from the car into the house when we arrived home. For a while, I tried utilizing the office’s wheelchair if I was lucky enough to find one in the entrance of their building. Things became so difficult that my husband scrounged up an old, rickety, abandoned one from an office building which he manages. It served the purpose but was very cumbersome, much too large for our daughter’s petite size, and very uncomfortable for her with a soft, sagging seat which did not help her pain. We continued to drag our heels on the pursuit of a very own wheelchair for our daughter because we kept hoping that she would get better and this phase would pass.
Eventually, it was our family doctor who realized her condition was not improving any time soon and we just needed a wheelchair so we could get to appointments. After a denial and fight with the insurance company, her basic wheelchair arrived. Yep! Can you imagine a person cannot even walk on her feet and the insurance company says she does not need a wheelchair?! The chair was nothing fancy, but at least it had a memory foam seat and was sized to her frame. I wish we had pushed for it sooner as it made my job so much easier as her transporter.
Not long after that, I started to pester my husband about building a ramp in our garage. We had only two small steps leading into the house from the garage, but it was nearly impossible for her to walk up those stairs even with assistance. Some days I would watch her crawl up them because it was easier than walking. When we finally made the decision to install a ramp and I saw how it gave her back her dignity to not crawl up those stairs, I was ashamed that we had not done that for her sooner as well.
While the wheelchair may have made my job easier, doctors do not like to see a young girl using one. Some would admonish us for allowing her to use it. My answer to that was to address it right then and there in their office and tell our daughter to get up and try to walk for them. When they saw that her legs could not even hold her up, how they would wobble under her like a newborn calf, they would quickly change their tune. Even still, at follow up appointments, it was not unusual to be made to feel that we were not doing enough to get her out of the wheelchair and that somehow we were to blame for her being in it. Yes, we even had one doctor openly say that to us. Ouch.
My daughter is almost twenty-two now and managing a lifelong condition with EDS. She does not like to use her wheelchair as people see the wheelchair before they see her. She never wants the pity of others. Walking any distance not only triggers profuse sweating and shakiness, but creates severe pain later in the day or on the following day. There is always a price to pay for trying to be “normal.” Some days I wish she would choose to take her wheelchair so that we could go more places. And yet I know that even in the wheelchair, exhaustion can set in quickly and shorten our times out of the house. It’s not the answer that fixes everything.
It is also important to realize that even though you obtain a wheelchair, it does not mean your child will need it forever. EDS is a variable condition. There are good days and bad days. It may take years for an EDS child to come to terms with using the chair. He or she may choose to stay at home rather than be seen in public in the chair. I wish we had not waited so long to secure a wheelchair. Now that we have one, it makes me feel prepared that I will be able to transport her if or when she is possibly wheelchair bound again.
Are you trying to manage without a wheelchair for your child, EDS Mama? Maybe you are not at that point yet of needing it or perhaps you will be one of those who will never need it. If you have days you could benefit from one, I can say that it is nice to have it when you need it and you and your child should never feel guilty about using it. Furthermore, it does not mean you have given up hope for healing simply by getting one. Don’t be so hard on yourself, dear Mama. One does not have to physically walk in order to walk with God. 2 Corinthians 5:7 says, “we walk by faith, not by sight.”