Sleep. Oh, how I took sleep for granted. I’m so physically and emotionally drained by 9pm that I can barely keep my eyes open. But 2am always arrives and I jolt awake like clockwork. What seems so much clearer in the daylight hours, all my research, all the reassurances I can give to my fully conscious mind about the future of my child and my family become groggy and clouded in the wee hours of the morning. My hopes that my joy in this pregnancy and the excited expectations for Quinn will be restored are dashed by the darkness and the silence. And my already frantic inner dialogue does nothing to quell my fears, especially when I’m left alone with my thoughts and there’s nothing to distract me. I am terrified.
I’ve learned a lot of great facts about kids with Down syndrome…they are sweet and more like typical kids than they are different. The Ds community has taken huge strides toward achieving a better quality of life in the past decade, and Quinn has a greater chance of attending college, reaching a level of autonomy, and even getting married than another child with his diagnosis even 10 years ago. But all the positives can’t erase the fact that, statistically, we’re in for a very heartbreaking and challenging road. Here are just a few of the things that kids with Ds face in their lifetimes:
- 99.8% have some level of mental retardation. I know the word “retardation” is becoming a bit antiquated (and even serves to upset many parents of kids with Ds), but every other term just sugar coats it for me. “Mental challenges” doesn’t seem complete enough. Hell, we all have mental challenges. What we don’t all have is a very significant disability that makes even basic concepts like reading and multiplication too challenging for many kids with Ds to grasp. If I’m going to take a pragmatic approach to raising my son, I need to do so with the raw facts. From a clinical standpoint, mental retardation is still the preferred term. This doesn’t mean I condone the use of the word “retard” or “retarded” as a method of insult. That’s just tacky and ignorant, but I won’t become a victim of political correctness because it serves to make the reality of our situation less troubling. I won’t live in denial.
- 45% have congenital heart defects, most of which require surgery in infancy. This terrifies me.
- 18-38% have coexisting psychiatric or behavior conditions such as Autism, ADHD, OCD, and depression. As if they don’t have enough to deal with…
- Kids with Down syndrome are 15 times more likely to develop certain cancers like Leukemia and testicular cancer.
- By age 40, nearly every person with Ds exhibits dementia or other signs of Alzheimer’s disease. Considering this runs in both sides of my family at a relatively significant level, I can assume that Quinn will develop Alzheimer’s or its characteristics at some point in his adult life. In fact, there is a significant connection to the extra chromosome and the gene malfunction that causes Alzheimer’s. My family history may be the reason my kid has Ds to begin with. This does nothing to erase the existing guilt that this whole damn thing is my fault. I know that it’s not. There’s nothing I could have done to prevent this. But it was MY body, my DNA that caused this extra chromosome to appear, and even though I couldn’t control it, I still feel the burden of responsibility.
- Even at 24 weeks gestation, my risk of fetal loss or stillbirth is as high as 30%.
I know I shouldn’t be focusing on the negative, but I just can’t shake these realities. I’m a worrier as it is…hell, I have a minor freakout every time Brian and Atticus drive to work/school in the morning because I’m scared they’ll be in a terrible accident or be abducted by aliens or transported to another dimension (okay, not really, but I wanted to illustrate the very core of my unfounded and irrational fears). How the hell will I keep it together when faced with the very real and very scary risks above? Every cough will be the plague, every hiccup a trip the ER.
These are the thoughts that keep me up at night, and Brian reminded me that I’m at my worst when I lack sleep. So coupled with a very real depression about being in this god-forsaken city and mourning the loss of the child I thought I was having, I’m also terrified for the future and working on an average of 3 hours of sleep each night. And while I will love this little boy just as much as I love Atticus, I can’t help but fear the unknown. I can’t help but worry if I can actually do this…
I guess I should end on a positive note, because I know it’s what you all want to hear. I know you want to see that we’re ok and accepting this challenge and will do everything in our power to see the light at the end of this dark tunnel. And we will. Eventually. We’ve been in touch with some local families and have plans to get together with them and learn from their experiences. They have nothing but great things to say about their kids and promise that my mood will change when Quinn arrives. I’m sure they’re right, but I’m still just so overwhelmed with grief and worry that it’s hard to see that far ahead.
As always, thanks for reading, thanks for your support, and thanks for letting me vent. This blog is the one outlet I have right now, and it truly serves to help me release this baggage and move forward. I can't be positive all the time, but releasing this negativity will help bring me back around to where I need to be.