Niece

And the bad news just kept coming.

My niece was born with a large hole in her heart. At nine months old, she had surgery to correct this problem. She was the first girl after having five nephews. I was excited to dress her in tutus and curl her hair! Due to her many health problems early on, I felt as though I did not bond with her as much as I should have. What if something were to happen to her and I had gotten too close? It was hard enough to watch a baby go through such hard things, it was easier to keep my distance. She is twelve now, jeez the time sure has gone by fast. Over the years she has gone through her fair share of doctors appointments and procedures. She is smaller than other girls her age, but is otherwise in good health.

A few months back the husband and I had gone to one of her volleyball games. Right away I had noticed that she seemed to be hunched over and that her feet looked different. When it came time for her to hit the ball, she could barely get it into the air. I figured she just needed to practice more. When the husband had mentioned to me that he thought she looked "different" too, I grew concerned. It was just a few short weeks later that my brother and sister-in-law informed me that they took her to the doctor regarding the same concerns. The doctor immediately told them that he suspected something serious was going on and sent them to the children's hospital. The diagnosis was not good. After many doctor's appointments and tests, it has now been confirmed that she has CMT disease. Basically, her muscles are weakening and eventually she will have to utilize a wheelchair. She has already lost some feeling in both of her feet, legs, palms and her left arm. She is only twelve.

I still have yet to really process this information. I am on survival mode. My brother is devastated and not dealing well with the news. He is normally not one to show emotion, so it has been hard to see him struggle. The first thing I said to him is that we will be a strong family and get through this together. That was a lie. Our family is dysfunctional and sadly, this would not be reason enough for anything to change. However, at least I can vow to be there by his side. We don't have the best relationship and he has been less than supportive throughout the years. But, my heart breaks for him. Could you even imagine getting news like this about your child? And knowing that there is nothing you can do to fix it?

The plan is to treat her the same as we normally would. She will attend physical therapy and stay as active as possible for as long as her body allows. I am spending my free time educating myself on this disease and soaking up as much information as possibly I can. I feel guilty that I have not tried harder with bonding with her over the years. I should have been taking her to the park, running on the beach and dancing until our feet hurt. I cannot even comprehend that soon we will not be able to do any of those things...  

To find out more information about CMT disease, please visit www.cmtausa.org.