Two years ago, while taking a walk, we found the first signs of scleroderma. After that, there were many tests, with long days and sleepless nights. We received a diagnosis after 17 days of testing. Some days, it is hard to believe that it has already been two years, and other days, I wonder how it has only been two years. There have been many changes – this is a new normal, but I’m still trying to keep things as normal as possible for everyone.
There is absolutely no one that can prepare you for the words you hear when your child is diagnosed with a disease. My sweet Jessie has been amazing through it all. There are days she is your average teenager, and days when she is emotional and asks why she can’t just be normal. Over these past two years she has used her voice to not only help raise money for scleroderma research and to help other children with scleroderma, but also to raise awareness.
Some days, the challenges she faces because of the disease are more difficult than others, but she still presses on. I have heard so often that Jessie doesn’t look sick. I guess she doesn’t to the average person. I have looked back at pictures of her two years ago, and now I can see the signs of scleroderma on her face. The most obvious sign of the disease is in her hands and feet. However, there are also many things going on inside of her body that can’t be seen, both physically and mentally. As her mother, I would do anything in my power to take this from her, just as any mother would, so knowing that I can’t is a very helpless feeling. I want Jessie to have and do everything her five siblings have been or will be able to do.
Our last visit to the Children’s Hospital was around three weeks ago. The current situation with coronavirus has had me a little on edge for Jessie. At our last visit, Jessie’s blood work showed that her numbers have not gotten better or worse but have pretty much stayed the same. We are going to be weaning her off the steroids, but because she was on them for two years, this will take some time. The steroids have helped Jessie gain weight and eat. In the two years she has been on them she gained 45 pounds, which she really needed to do. Her lung tests will be done again in the fall, but we are predicting that the results will once again be the same (low functioning lungs). At the eye doctor’s office, we found that her left eye is in poor condition, so she is basically seeing with only one eye. Fortunately, there seems to be an increase in the mobility of her ankles and knees. Her hands and toes are no better, and at this point probably will never regain any more mobility. As for the rest of her joints, the disease is present in all of them, and they remain the same.
After a plateau in growth for quite a while, she is growing again and has managed to pass up her mom in height, and she is quite proud of this. I was reminded once again just how quickly things can change when you have a sick child.
Today, I am thankful that things are as good as they are. Yes, they could be better, but they could be so much worse. If you are looking for a good cause to donate to please consider donating to the Scleroderma Foundation. Please help us find a cure and possibly a way to prevent scleroderma all together.