I recently went through the loss of my brother-in-law, and as I attended the celebration of his life, I watched his mother, a mother of three children. She has lost two of her children - my husband, and a stepdaughter are the only ones left. She will be ninety-two years old this year. She is strong but very frail, and all she could say was, "Why, why not me? Why do I have to watch my children die when I am old."
Those words hold so much pain in my heart. As you know with Huntington's and Juvenile Huntington's, so many suffer the loss of their husbands, parents, aunts, uncles, grandparents, brothers, and sisters. With Juvenile Huntington's, many mothers, fathers, brothers, and sisters watch these young children lose everything. You do all you can do to protect them. You hope, and you wait, but they just don’t make it. You lose your child to a disease that is so cruel, so exhausting and so unforgiving.
As a mother, that is the most devastating thing ever. You wish it were you. You wish your child did not have to suffer. You wish they could live their life and be happy and do all the wonderful things that life has to offer. You should never have to watch your children dying in front of your eyes and be so helpless. No matter what you do, it is never enough for this disease. You become angry, and you become frustrated. You wonder where your God is. You wonder why! We don’t have the answers, and someday I hope we will. I still believe in hope, and I believe there will be a cure. I stay strong and try my best to keep my daughters strong until the cure comes. People say you are so strong, but what other choice do we have? It is our only option to do what we must! I sincerely hope I will not be a mother that has to bury their child. I will always fight and educate people so they know about Huntington’s Disease and Juvenile Huntington’s because this disease is not rare, it is just rarely known. I will continue to educate doctors and nurses and people in general, so they are informed and know how to help people that suffer.
Recently in October of 2017, my daughter was hospitalized. She went code blue, died, but was brought back to me. The doctors, nurses, and staff came in and thanked me for everything that I taught them. This can make a difference for the next person with JHD or HD that goes into that hospital. I will not give up this fight! It is a promise I made to my children when they were diagnosed. As one mother to another that has a child with JHD, I know you will never give up. You will continue to educate, and continue to fight. I know as a mother that you would die for your child. You become superhuman...you no longer sleep...you no longer have any social life. You rarely leave the house only to get necessities. When you do sleep, you sleep very light because you always hear them calling for you. You go above and beyond each day. You have this incredible bond but most of all you have a heart that is so full of love that you will do whatever you can to protect your child.
LOVE THE MOST POWERFUL OF ALL!!