I have spoken a lot in this blog about being in the midst of an IVF cycle due to a positive gene test for Huntington’s Disease. But many of you may not know what Huntington’s is and how it affects those who are suffering from it. It is a disease that I would not wish on my worst enemy, as it is commonly known as a disease that is Parkinson’s, Alzheimer’s and ALS, all in one. This is due to it combining severe motor dysfunction, cognitive decline, and psychiatric disturbances in a single, progressive, and fatal genetic disorder. It causes involuntary movements (chorea) like Parkinson’s, dementia like Alzheimer’s, and muscle weakness like ALS.
Movement difficulties, such as involuntary/jerky movements and difficulty with balance. Cognitive difficulties, including problems with memory, concentration, and judgement, leading to impulsivity and poor decision making. Psychiatric symptoms including personality changes, mood swings, depression, irritability, and apathy. That’s overwhelming, right? Now imagine watching someone you love experience all of these and having this disease be the reason they die. Have the picture? Devastating, isn’t it? For more than 10 years, I had to watch my father, who had always been my biggest fan, lose everything that made him, the man I had looked up to my entire life. And I had begun to think, what if I had inherited the gene from him?
I secretly hated my father for having us because he had this disease, but he hadn’t gotten tested yet, so he was not aware. I don’t want to hate him but going through this process, while I understand the cost worries, I know for sure that this is going to be the best money that I have ever spent. When I decided to get tested before having children and pursue IVF, this was so that my children can be 100% HD free. And knowing that my parents were not focused on that above all else, breaks my heart. I was originally planning to do IVF with a partner, but plans change, due to a partner who wasn’t supportive, but despite that, I’m still laser focused on bringing a child into this world who I can call mine.
50% chance. There was a 50% chance of inheriting the gene that causes Huntington’s disease. Watching your father lose himself and pass away from the disease. Deciding to test so that you can plan for your future, and specifically for children, as you know there is a chance you could pass it onto them. After testing, the one month wait for results was excruciating. As soon as we found out what my father was suffering from, I knew, that if I was unlucky enough to inherit the gene, I would not have my children go through the same hell. It’s too late for me to not inherit the gene, but I can for damn sure, make sure the cycle ends with me, and through IVF, have biological children who do not have the gene. Through IVF, I can save my children from the absolute hell that I’ve had to endure. Most people wouldnt move forward with IVF if they did not have a partner. But I know that I want as much time as possible with those who call me “Mama” and while this journey has been difficult and exhausting, I know its the right path for me. Deciding to pursue IVF in order to have my dream biological children, is the first decision in a long time that I have felt completely sure about.
I have a gene that is going to kill me. And leave my children alone. And most people have told me that having children with this gene is selfish. But that’s in the future. While I do not want to ever expose my babies to this disease, I cannot change the fact that I have this disease. And I struggle with being okay with anyone in my life because I don’t want to subject them to seeing my future. I felt so alone losing my dad at an early age. Not many other people lose their father in their early 20s. I still believe that I should be able to get my dream even though I got the wrong side of the coin.
I didn’t ask for this genetic disorder. I will have at least 15 more good years before starting to show symptoms of the disease, but even then I have placed a self-imposed timeline on my ability to have children. While yes, my biological clock says I have 7-8 good years left, I want as much good time with my children as I can get. To me, I have MAYBE 2 years left of my fertility. I want as many good years as possible for me, but more importantly, I want to be able to give my babies extensive memories of me being able to actively participate in their childhood experiences with them. I want them to remember “Mom gave us everything she could and spent a lot of quality time with each of us. I have memories that will last a lifetime”.
I cannot imagine having to say goodbye to my children far earlier than I should ever have to. Most people do not consider their death while planning for children. But in my situation, I feel that it is vital to do. While all parents plan for their children’s futures, I have to begin planning at birth or before due to my shorter timeline. The positive in all of this, yes there is a positive believe it or not, is that knowing how and semi-when I am going to die is allowing me to take full advantage of every moment in my life. Every moment with my children will be incredibly special because I wont have that one day. And I want every moment I can get.
The hardest thing I am having to come to terms with is the idea that I am not going to be around for some of the biggest milestones of my children. While I should be there for their childhood and teenage milestones, but there is a good chance that I will not be able to fully participate in their adulthoods. Their engagements, weddings, marriages. Also the births of my grandchildren and watching them grow up. I am setting them up for success, but I’d do everything I could to be there for those milestones. My plan for the future is to set up care for myself when it gets to a point in which I cannot care for myself. Save money from the day they were born for their future.
I have already started writing letters for them to read on specific milestones or experiences they may have, so that they can feel that I am there for them, even if I am not physically there for them. I want the absolute world for my babies, and I’d do everything to be there for them as they graduate, and meet someone and start to build their own little families and live their lives. My babies may lose their mother at a much too early age, but they will never hurt knowing that their mother will always support them, regardless if she is on this earth or not.
My opinion is that no life is guaranteed to be free of hardship or disease, and that people with Huntington’s disease have the same fundamental human right to start a family as anyone else. I am simply a human that knows partly what her future has in store for her. I am a woman who wants biological children and I’m not going to let my genetics scare me away from that. I’m meant to be a mother and my children will be fiercely loved, and that is what matters most.
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