My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my future. I last saw her about a month ago and her body is in constant movement now. She is taking her new limitations in stride and continues to lead a fairly normal life despite her silent music-less dancing. My heart swells with pride at her ability to laugh, to live and to love. Her happiness means the world to me. She is such a sweet girl and she so does not deserve what is happening to her. None of us do.
My other older sister, who is gene negative between two symptomatic HD sisters, will be signing the papers to become my power-of-attorney within the next 6 months. There is no other person I trust more than her to fill the position. She has a tenderness towards me that fills my heart, but she is also ready to battle with whomever she needs to to do whatever is in my best interests. Not only do I trust her to always love me unconditionally and to make wise and compassionate choices on my behalf in the future, I trust her to slip on her maiden warrior hat on as needed. She is extremely protective of me.
I will be glad to have that power-of-attorney papers signed. In as much as I can make jokes to her about it, I am very thankful to her that she will be the one at the helm if and when the time comes that I lose my ability to steer. She looked after our HD father at the end stages of his Huntington’s (8 years ago), I feel it is so unfair for her to have to go through all of this again with me. And yet she is still willing to sign the dotted line to accept all responsibility for me in the future. She is also one of those HD heroes whom I spoke of.
Family comes in many forms. It has always amazed me how some people give so much power to people having to be blood related to count as “real family”, when in reality each and every family out there was started with two people who were not blood related. About 80% of my “real” family was/is not blood related to me, from my Dad, to my two extra Moms, extra sisters, a brother, assorted Aunts and most of my 18 nieces and nephews. These are people who have helped to feed my heart and soul.
Most of both of my families bloodlines have died out. I only have a handful of blood relatives, my two sisters, three nephews, my Uncle, and assorted cousins. I recently made the realization that there are only three people left in the world that bear a physical resemblance to me, my two sisters and my Uncle. Everyone else has passed away, like my Mom almost three years ago. But each of us will live our lives and along the way we pick our own family.
I count myself lucky for each and every person who loves me. My true family is made up of a mixture of amazing family and friends. I have about 10 people within my family who have offered to look after me when the time comes. My Dad heads the top of that list. He looked after my Mother when she was dying of cancer and he did an amazing job. My Dad and I are extremely close and I know I will always be able to count on him for anything I need. He will always be my number one fan, and I will always be his.
Because we have lost so many family members my family has a true appreciation for the family we all have around us that we sometimes take for granted. These are the people we have shared out hearts with, the ones in our day to day lives that we have shared our joys and tears with, the ones who have been there to help celebrate our victories and help us to mourn our losses. We are linked by our combined shared history and shared life experiences.
My Huntington’s diagnosis was a hit to each and every one of these people. My entire family fell with me the day I tested positive. My HD progression had been slow but steady, although since leaving my marriage and relocating ten months ago I have noticed a big drop in my Huntington’s symptoms. I now have firsthand experience in what a huge role stress can play in amplifying a lot of your HD symptoms. Several people have noticed a marked improvement. And I myself have noticed it too; the HD dragon has been forced to take a step back in time...the crowd goes wild
The gain seems a minor one in the big scheme of things though, because while the dragon has taken a step back from me, he has taken several steps forward towards my oldest sister. The cure is so painstakingly close and I pray that is comes in time for her. The fact that my oldest sister and I both have Huntington’s is a double hit for a family that has already dealt with way too much death and tragedy. And yet our family continues to put on a brave face and carry on regardless of the promise of future heartaches if the cure does not hurry.
I am so very proud of all of the members in my extended family; they are my huge support network that works behind the scene to help keep me sane, well…saner. I have three amazing and supportive adult nephews that I know will always be there for me, and they add a lot of joy and excitement to my life. They are men now. I find it really interesting how the dynamics of all three of these relationships have changed. For example they all drive now, two are in long term relationships and my oldest nephew just gave me a great nephew about 4 months ago. I am so proud of the goodhearted and kind men they have grown up to be.
Three of my younger nieces still do not know about my HD yet and since I have now relocated we can stall that a little longer. We should have told them all ten years ago but chose to wait until it became so obvious that we had to tell them. So at this point there is no point in burdening their hearts with the truth until we have to now. They give me a lot of unconditional love along with their younger brother. Of this 5 child sib-ship only my oldest niece knows about the HD and she just found out about it a few years ago. She is 19 now and such a loving person that I know when my Huntington’s gets exposed she will be there for her three younger teenaged sisters and little brother. HD is a brutal truth at any age and I dread the day they are told.
Family is incredibly important to me. I realized years ago that God may have given me the HD gene but he also gave me an amazing family to go with it, so I figure it is a fair trade. We may be small in numbers but we are forged of tempered steel because of all the fires we have experienced together. When something bad happens to one of us, it happens to all of us. I really appreciate all the extra support my family has given to me this year. It has been a year of some pretty big changes for me and I thank you all for your loving support.
Remember - good judgment comes from experience; and experience - well that comes from poor judgment…
Author's Note: Merry Christmas to everyone and a special salute to all those HD heroes in the world and all those HD angels up in heaven.