Friday, 12 February 2016
After coming home from Children's Hospital with the news that Anna had a chronic illness,we were still in a bit of a daze. As happy as we were that her heart was fine, we couldn't fathom that this was going to be her life. We couldn't imagine a life of these episodes that were happening weekly. We couldn't imagine a life where Anna was basically unable to function on a day to day basis. We couldn't imagine life where so many nights were spent laying on the kitchen floor as Anna's hands and legs seized and trembled, and she couldn't see anything or couldn't hear anything. We couldn't imagine a life where Anna didn't play competitive sports. I remember sitting down one morning while everyone was still sleeping, a few days after her diagnosis, and searching the internet for any information. (The cardiologist at Children's said most doctors are not familiar with this condition so we would need to do our own research). I came across this site and read this article and it completely brought me to tears and this is the moment that reality hit me.(Here is the link if anyone is interested in reading it! http://www.dynakids.org/schools.jsp ) This is the moment where I realized that her life had changed and so had ours. I cried for hours. I sobbed about how life had changed so drastically in such a short amount of time. I cried about how Anna had to spend so much time in a wheelchair because she had no energy to move and no strength to hold her body up. I cried just envisioning a quality of life that was so incredibly different than the life Anna had only months before. I felt robbed of what her life was supposed to be like. This is also the moment when I said to myself that this will not be her life. It may be like this for a short amount of time, but I refuse to believe that this is it. I refuse to believe that there is nothing that we can do to help her at all.The next day I made an appointment with my family Dr.