Thoughts on a Prenatal Down Syndrome Diagnosis

These last few weeks, I've been introduced to other mamas and families chronicling their Down syndrome "journey" thanks to the crazy - and sometimes small - world that is social media. I've stumbled upon a handful of Instagram accounts and started following along in an attempt to gain some insight as to what our future with Baker will look like should he be born with Down syndrome.

One blog in particular, Cedar's Story, started a blog-hop where people can share about Down syndrome as a means to educate and help others. I wanted to be a part of it but didn't think I had the authority to speak on the subject since we're the new guys on the block. After reading through some posts last week and this mama's account of their prenatal diagnosis, I wanted to jot some things down.

I still don't know much but what I do know so far is that there have been so many emotions. More than I care for, really. Down syndrome and heart defects have been on my mind all day, every day for the last 6 weeks. It's constantly there - I feel like it's all I think about or talk about or blog about. At the same time, we're still learning. It feels all-consuming at the moment because we need a hot minute to adjust to our new reality.

Justin and I have been trying to process our feelings and thoughts and along the way, I've been told numerous times that I'm "handling" this whole situation really well. It may appear that way, and while I'd agree that we've kept a level head so far, I also wanted to share that it hasn't been a walk in the park, either.

I was hesitant to publish a post like this because I don't want to come off as superficial or ungrateful or whatever. And I think, personally, I subconsciously didn't want to fully admit to myself that we are actually dealing with this - that this could be our life. What if I typed out all the feels and he ends up being born without Down syndrome? It's unlikely, given the genetic test results and professional medical opinions we've gotten but still - it's technically a possibility, right?! I find myself going back to those thoughts every once in awhile and have to remind myself of the more realistic outcome.

Either way, I figured we still lived through the day we learned of Baker's heart defect and it's correlation to Down syndrome. I still texted my pediatrician brother seeking medical advice and asking questions and being told not to google things. I still cried - more like sobbed - on the phone to Justin and later my cousin to tell them what the genetic counselor had told me. That all happened, regardless of what any test results say so I wanted to write it down now that I've had a few weeks to process everything.

We had sort of come to terms with Baker's heart defect. It was scary as hell, yes, but after our initial meeting with the cardiologist I was comfortable knowing we had a plan and could start learning what to expect when it came to surgery to fix his heart and make him whole. I was starting to wrap my head around the fact that I'd have to hand my baby over for open heart surgery but I knew we were working with great doctors and that we'd have the best care for him.

The week of May 8th and the days leading up to The Call (dramatic, right?!) from the genetic counselor were hands down the most stressful days of my life. I feel like I'm pretty even keeled most of the time. The kids can test my limits some days but I really try not to let things stress me out but to be dealing with something of this magnitude - serious health issues and lifelong struggles for your little unborn baby - naturally put me over the edge and feeling every emotion imaginable.

The probable Down syndrome diagnosis was devastating. That was my first reaction upon hearing the genetic counselor read the test results. I was crushed.

I was so, so sad. Sad for Baker - that he'd have to live a hard life and face difficulties that other kiddos don't normally have to face. Sad for the girls and how this would change their lives. Sad for Justin who, like a lot of guys I'm sure, have certain hopes and dreams for their son. I was sad for me. This is not what I had planned or what I wanted. I don't want to be a special needs mom. It's makes everything so much harder. It's too much.

I was scared and angry. Could we deal with this and come out on the other side? Why is this happening to us? We already had two perfectly healthy girls and just wanted to add at least one more child to our family. Never in a million years did we think we'd be dealt this card. I was nervous about what others would say or think; wondered how we'd handle the inevitable stares from other people. Would people feel sorry for us? Does this mean our family is complete? We've always wavered between having three and four kids. This isn't really how I wanted end my child-bearing days. At the same time, I never want to go through something like this again. Surprisingly and strangely enough, I don't feel done but I also don't even know what our life will look like 6 months down the road.

I felt guilty. I never thought I "caused" his heart defect or Down syndrome but I still felt guilty knowing it would change things for the girls and our family. I'm worried I won't be able to be there for them 100% of the time or be the type of mom I want to be. Chalk it up to stress and hormones or whatever, but I'm already seeing myself losing my patience faster. I'm quicker to yell and lose my cool and I hate that. I really, really hate that part.

All of this nearly broke me.

We're a few weeks in now and the sadness has lessened. We've learned that Baker will qualify for therapies to enhance his life and that we'll set goals for him just like we do for our other kids. The girls will learn compassion and how to advocate for others. Justin will still have that father-son relationship, it just may look a little different. Then again, maybe not. 

I didn't plan this but when has life ever gone strictly to plan? Do I feel like the "chosen one," someone handpicked by a higher power to raise a child with special needs? No. Not yet at least. Do I feel "blessed" or "lucky?" I'm not sure. But, those are the words I keep hearing when discussing our situation with others so I have to believe that eventually I'll feel those things too.

I realized I was mostly scared of the unknown and started reading and learning about DS instead of shutting down. I always knew we were strong but this has showed us without a doubt that we can handle anything. Instead of feeling nervous I began to feel empowered - knowledge is power after all. I know people will sometimes stare but I don't care what you think! If you stare or say weird things I'll politely call you out and hopefully turn it into a teaching moment. :)

We don't need to make any family planning decisions now. We're getting ahead of ourselves. I have to remember to take one day at a time and should we want to try for a 4th child in the future, we'll be armed with the information we need to make the right decision for our family.

I still feel the mom guilt but moms always deal with that regardless of the situation, right? The girls will still know and feel how much we love them and we'll involve them throughout the learning process. I'm still stressed and short-tempered at times but I'm working on it.

I was nearly broken but feel a little more put together day by day. I still feel all or some of these things most days. Hell, I can even go through all 6 emotions in an hour, I swear, but I also feel love and support and excitement. I feel thankful that we have time to regroup each day and focus on keeping Baker healthy in-utero. I'm grateful to the moms and dads behind the blogs and Insta accounts that I've found recently for posting and sharing their stories because they've helped me so much.

This post is all over the place but I hope it can serve as a resource for another mom or dad someday after they, too, hear these things about their unborn baby. The thing that has helped me most, I think, is getting confirmation that my feelings are normal. It's OK to feel sad and angry and scared. It's totally and completely OK.

I'm excited for the next part. That moment we get to meet him and he magically melts all of our fears away because in the end, it doesn't matter. I may not know what I'm doing or how I'm going to handle everything but I do know that Baker is part of me and part of our family.

I can't wait to meet you, cute boy!