I've gotten asked around 1000 times (maybe more, seriously) when I'm going to have kids. And 990 of those answers have been a pretty common response to the tune of, "Oh sometime soon I hope!" or "We're still young, we've got time!". But what I really want to say is that we can't have children unless we spend a lot of money, time and energy.
I feel like thats too long/personal of an answer that will just cause further questioning, going beyond the small talk most people were simply looking for. For the last 3ish years, I worked with literally hundreds of (baby crazy) women (all in one building), and got the question many times, often from the same women asking me over and over. One time I just told a girl matter of factly, "I can't have kids". Just to get her off my back. For some reason, people feel its their business/right to know whether or not you become a parent. Pssst. Its not.
So, I'm here to set the record straight. I'm no longer going to hide my truth. And that truth is called Huntingtons Disease (HD). This is a very scary disorder that is only passed on genetically. Each person affected with the Huntingtons gene has a 50/50 chance of passing it on to each child they have. So really the only way to stop this gene mutation, is to simply not have kids (as there is no known cure yet). Unless one goes through IVF and PGD (in-vitro fertilization and pre-implantation genetic diagnosis), which can cost around $20,000 per try. Basically they test the embryos for the genetic mutation, and the ones that do not have it, they implant back into the body in hopes that a pregnancy will continue and the end result would be a 100% HD free baby that is 50% dorky me and 50% hottie hubs.
You see, my incredibly amazing and wonderful husband has HD. I knew this was a possibility before we got married and I remember thinking that I might not be able to have children. But at 22, you feel like you have your whole life ahead of you, and I knew that I wanted to be with my man and nothing was going stop that.
A couple years ago, he decided he wanted to find out for sure. Mainly because we did want a family in the near future, and we wanted to know before we got pregnant. We decided that we will not get pregnant naturally to ensure that the HD gene stops here. I want to be clear that this was our personal decision. A very personal, long debated decision between me and my babe. See, the other side of the coin, is that HD could possibly have a cure before our child will be of the age where HD starts (not until around age 50ish) or better yet, there's the 50% chance our child wouldn't have it at all.
I've heard quite a few times in the past that we shouldn't worry about HD and just have babies. I soooo wish we could. But I know that we would have to someday explain to our child that he or she needs to be tested because there is a 50% chance they too may have what their father has. I would rather explain to my child why we chose adoption, or why we went through IVF to conceive. This has weighed heavily on my heart for so many years and I've gone back and forth on what to do, and all I can say is that our decision is solely ours. I can completely understand why couples have chosen to have their own children who may be at risk, and in fact I did get pregnant about 5 years ago to have that end in miscarriage. God has a plan, things happen for a reason. Two cliches I do believe in.
As a perfectly healthy 30 year old, this is extremely hard to grasp. Especially because I always imagined myself with at least 2 kids by this age. (I actually want 4 total!!!) No one every imagines that when they decide to start a family they will have such a giant roadblock. I've come to realize that infertility is a common problem for many people. Being able to get pregnant (for free) is a privilege. Unfortunately, most don't see that. Most accidentally get pregnant and then the decision to become parents has been decided for them. One of my biggest pet peeves is seeing white trash people having babies they can't/don't want to take care of. It also bugs the absolute crap out of me when I see people complaining about their kids on FB or to me. I understand that parenthood has its not-so-fun moments, but there are people out there that would give their entire life savings to have a bad day in parenthood. Me me me, pick me!!!
One reason I have not come right out and blurted to the world my life story is because its an obviously very sensitive subject that my hubby and I share, and I'm not sure I was totally ready before. But education and knowledge is power, and I want to everyone that knows us to know about HD. The more people know and understand, the closer we can come to a cure. We need to support the dedicated teams out there right now that are spending their time and energy working on the research for a cure. I want to spend as many days as God gives me with my man.
Life is not fair. We all know this. So far, my life has been nothing but blessed to the max. I had the most amazing childhood, luckier than most. I got to fly to McCall in my dad's private plane for breakfast (mmm....Those Potatoes). I've travelled to the Bahamas on a cruise ship, Hawaii, and to Taiwan. I have parents that are still married and madly in love. I have 3 older siblings that have always wanted to spend time with their much younger sis. I've been married almost 8 years to my bestfriend from high school (have I mentioned how gorgeous he is?). I have the most amazing, sweet sweet, precious dog. So I suppose some wrench needed to be thrown in the mix to bring me back down from cloud nine.
I'm ready to give people an answer they probably were not expecting the next time I get asked. I'm ready to spread awareness about HD. Please consider donating time and/or money to HD events such as the Hog & Grog event held in Lewiston every year, or visit the HDSA website for info/resources/events. My brother-in-law and his wife have also started a non-profit organization called Healing Huntingtons and I encourage you to "like" the page to stay updated. My family needs your help, as do many many many families out there affected by HD.
Thanks for the support, love, and kind words already given to me and my family. God is ever present.