When I found out I was pregnant with Hale it was the LAST thing in the world I was expecting, and truthfully, wanting. I was in over my head with the 3 young kids I already had and while more kids were in the plans, those plans rested a little farther in the future. Mark and I had come to the conclusion early in parenthood that we wanted 5 kids. It kinda seemed like the perfect number to both of us. After the first 3 came my feelings on having 5 kids didn't really change but the time frame definitely did. The plan was to wait 3 or 4 years and then have 2 more and that would round off our family. But then I got pregnant with Hale and he was going to come two years after Bracken and continue on with the strange sort of clockwork going on with all our kids coming roughly every two years.
I was just so scared and so unsure and probably a little bit crazy. I didn't really understand why I got pregnant when I just wasn't ready. And I knew my kids were all close together and I knew a lot of people thought that was weird and now I was adding another to the mix. In being a parent I have learned a lot about myself. Growing up I loved babies. I loved my younger siblings and my little brother Carter was my best buddy. I was practically a second mom to him and I loved it. But I guess being an adult really changes things and I learned that being a mom and in charge of my own household isn't as natural to me as I used to think it was.
But Hale was coming and I finally came to terms with the fact that God must know something that I didn't and I needed to trust that this was how our family was supposed to happen.
Flash forward to the August after Hale was born and we got some pretty devastating news for our family, my family. My mom was experiencing various health issues and she had been coming to Utah to do testing with the neurology department at the University of Utah. When my family came here to visit us that August they also came with my mom's diagnosis of Huntington's disease. This shouldn't have come as much of a shock because my mom's mom died from HD and 2 of her brothers and a sister also died from HD. But my whole life my mother was so sure she didn't have it and if she didn't have it then we couldn't have it and all was well. My mom is in her early-mid 50's and all of her family with the disease was already dead by this age. The onset of my mom's symptoms are very late for her family and so it really did seem like the disease would not plague us.
I haven't told very many people about this but with the few people I have told it's become very obvious from people's reactions that they don't quite understand the devastating nature of Huntington's. Which is understandable since Huntington's Disease is the quintessential family disease. So unless HD is in your family you are most likely unfamiliar with the disease.
So I wanted to take a little bit of this post and your time to explain what Huntington's Disease is. For a more thorough explanation go to this link here, but this website is where I am citing most my information from. Huntington's disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person's physical and mental abilities...and has no cure. Every child with a parent with HD has a 50/50 chance of carrying the faulty gene.
Symptoms usually appear between the ages of 30 to 50 and the disease worsens over a 10-25 year period. Over time HD affects an individuals ability to reason, walk and speak. Some of the symptoms include: personality changes, mood swing and depression, forgetfulness and impaired judgement, unsteady gait and involuntary movements(chorea), and slurred speech, difficulty in swallowing, and significant weight loss.
Most of those afflicted with HD don't actually die from the disease but will die from something like choking on food because of an inability to swallow. Suicide rates among those with HD are also very high which is why being diagnosed is a very personal and individual decision that should be pondered between you, God and your spouse. Never try and tell someone with HD in their family that they should or should not seek a diagnosis. It is bad form. Because the rates are so high each person seeking diagnosis has to have a psych evaluation to decide if they can handle knowing their diagnosis.
For me personally I don't know what I'll do. When I first learned my mom had HD I had a bit of a delayed reaction and probably seemed to be doing ok but then a few days later it seemed to hit me a little harder and I had a good cry and decided I didn't want to know if I was dying. I went most of the past year barely even thinking about it. But a few weeks ago something brought it up again and I think maybe my reaction was even more delayed than I thought because the true significance of it all has started eating at me every day. I want to say now that I don't blame my mom in any way for this. But when it comes to myself I can't say the same. I am daily tormented by immeasurable amounts of guilt knowing that, very possibly, I will be directly responsible for the possible/eventual deaths of my 4 children. Sometimes it hurts so much knowing that I could be the reason why my children die a long, unpleasant and drawn out death. And now I wonder if knowing might actually be better. Because if I don't have it then this guilt I feel, all these tears I cry, don't have to happen anymore. And if I do have it, maybe I can come to terms with it and do all those things Mark and I were planning to do later in our life, now, before it is too late.
I know this post is very depressing when it should be all about Hale but I need to say this about Hale. Hale is such an important member of our family and I am so thankful that God saw fit to bless us with him before HD became a real part of our future. I can't, in good conscience, bring another being into this world knowing that I could be dooming them to this and I believe that God knew that and he knew that Hale needed to be a part of our family. He is such a huge blessing in our lives. Words can't even appropriately articulate how much I love that chubby boy. Every day I wanna squeeze him and kiss him and eat him up because he is the yummiest, happiest, sweetest little boy. He is such a good boy and is so chill most of the time. He has learned that he has to be loud to be heard among all the other voices around him and isn't afraid to let you know that he wants to be heard. He loves crawling up and sometimes down the stairs even though it gives mommy a small heart attack every time. He loves open doors but they are always getting shut before he can get there. Sometimes we sing "all my life has been a series of doors in my face." to him because he get's so devastated and angry when it happens. His siblings love him to death, sometimes almost literally, and I often have to tell them to back off a bit so the poor kid can breathe.
This kid. He was meant to be a part of our family. I don't know what the future holds for any of us but I do know that Hale is a very integral part of God's plan for me and my family. We have all already been so blessed by him. The past year has been full of a lot of anxiety and stress but also a lot of smiles and laughs and loves and happiness. Thank you to anyone who made it this far and took the time to understand a little bit better about Huntington's Disease. And feel free to oogle at that little guy up there because he is the cutest little chubster on the planet.
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