This is it! The end of this year’s Down Syndrome Awareness Month. I had hoped to post this yesterday, but I developed a lovely case of strep and wasn’t able to do much more than rest and take the kids trick-or-treating yesterday. I will have one post after this to wrap up the month and all the beautiful faces and stories that were shared. I considered many different options for the last post of the month, but then a friend asked if I would be sharing my own story. I hadn’t even thought of it. So here is my experience of discovering Sam’s diagnosis and the emotions that followed. If you have any questions as you read this, or if you’d like to know more, either leave a comment or send me a message on our contacts page. I’m always happy to share our journey! And as always, you can find us on Instagram at @TheMangoMemoirs.
When did you find out about Sam’s diagnosis?
The first whisper of Down syndrome during my pregnancy with Sam was just after my 20-week lab work was done. My doctor (a resident physician, colleague of Pete’s, and my friend) called to tell me some of my numbers showed an increased risk for Down syndrome. Honestly, this didn’t get me overly concerned because I remembered reading in multiple places while pregnant with Ella that those numbers can come back indicating the possibility of Down syndrome when, in fact, it is not present. She told me to wait for a call from the nurse to schedule another ultrasound, but she was calm on the phone, so I was, too. However, after the nurse called and I heard her very hurried tone, I became worried. I hung up with her and cried hard in the middle of my living room floor. Pete was working and Ella was napping. I wasn’t crying about the possibility of Down syndrome, necessarily. I was just scared. I called Pete to share the news and he made arrangements for us to go together to the Level 2 ultrasound the next day.
We first met with a genetics counselor who asked us pages of questions about our medical histories. Then we went in for the ultrasound. I don’t remember a whole lot about the actual ultrasound. After maybe an hour of in-depth photos, the high-risk OB came in to talk with us. She told us there were no soft markers for Down syndrome, which, now that I know what that means, I’m amazed. A soft marker is something that shows a possibility of Down syndrome, while a hard marker is something that shows a much higher likelihood of the diagnosis. We were asked if we wanted an amnio so we could know for sure, but after Pete and I prayed about it, we decided to pass. I went home and read about Down syndrome in infants on the Mayo Clinic website out of curiosity, wondering if it would change the delivery at all. It really wouldn’t, so I didn’t look any further.
Just a couple weeks after the Level 2 ultrasound, we met with an OB at the hospital, another good friend of ours, who had read our charts. Again, I don’t remember much from that visit. What I do remember is hearing that the risk of our baby having Down syndrome was fairly low due to the lack of soft or hard markers in the ultrasound. I walked away from that appointment and completely put the possibility for Down syndrome out of mind. I truly believe God is the only one who could take a worry like that completely out of my mind. I was at peace the rest of my pregnancy. We chose not to tell anyone about our appointments and the possibility of Ds. Without knowing for sure, we didn’t want our family and friends to be unnecessarily concerned.
Then came the day we finally met our Samuel in late May 2012. Everything went well with my labor. In fact, I progressed so quickly, meds were not an option. I pushed for nearly three hours before we decided a c section was necessary. I felt a lot of peace with the entire process, which seems appropriate looking back because we had already chosen Sam’s Swahili middle name: Amani, meaning peace. I prayed for the doctors and staff before the surgery began and hummed worship songs during it. Then, when Sam arrived, he did not cry. I could see him on the warming table, and asked Pete to bring him to me. When my darling boy was close, I spoke his name. He opened his eyes and looked deeply into mine. In that moment, I knew. And I felt peace. A peace like something inside me had already acknowledged my baby boy and all he was. He was then whisked away to the NICU with Pete, my mom, and the doctors and nurses (most of whom were our friends), and his diagnosis was quickly confirmed through physical examination.
What were some of the emotions you had when you got the news?
Sam was in the NICU for two weeks as he learned to breathe and eat on his own. During that time, Pete grieved deeply. Being a physician, he was aware of the medical challenges many with Down syndrome face. He also needed time to process the reality that his son would walk a different path than the son he had imagined for so many years. Pete had largely worked through his grieving by the time Sam came home with us, which was when mine began. I remember many times, while alone with my baby, looking into his gorgeous, almond-shaped eyes, feeling I had failed him. I had failed to protect him and grow him correctly and, because of that, he would have to live a life filled with judgment and hurt. I wondered if there would ever be a time when I could look at my little boy and not have my first thoughts be of Down syndrome. I cried and cried and I apologized to my Samuel for not being enough for him. Intellectually, I knew I had done nothing wrong, but my heart needed time to believe that, too.
What are some of the challenging things about having a child with Down syndrome?
One of the hardest things for me has been to fully embrace Sam’s pace. I’ve already seen in so many ways that Sam will do what ‘typical’ kids do, but he’ll do it in his own time. I have no problem with that. The harder part is watching other kids his age with Ds doing what we haven’t quite been able to do yet. A real example right now is that Sam is nearly 3 1/2 and is not walking. I have friends whose little ones are much younger and are walking and running. It’s hard some days. I have to intentionally tell myself that it’s not because I haven’t worked with him or that I am doing his parenting wrong. Every day he gains more interest. He’s getting stronger. I know without question he will walk. I just have to wait for Sam to be ready.
It can also be really hard to encounter those who have set ideas of Down syndrome and who don’t seem to want to change those ideas. The first time this happened, I was having a conversation with another mom I had just met at our local library. She was an area teacher and had two of her kids with her that day. Sam was about 10 months-old and was playing on the floor. As we chatted, she told me she had a ‘scare’ during one of her pregnancies, but after an amnio, she found out her child did not have Down syndrome. She went on to say that she and her husband just wouldn’t have had time to care for a child with special needs with their jobs at that point in their lives. She made it very clear she wouldn’t have gone on with the pregnancy. I was so surprised, I didn’t know what to say. I finished our conversation, took Sam to the car and cried. I felt she was saying my baby boy, who is so full of joy and delight, wouldn’t have been worth it. Those are the mindsets I am out to challenge and change. And yes, if something like that happened now, I would certainly have something to say in return. Not too harsh, but absolutely educational.
What is the best thing about having a child with Down syndrome?
I honestly feel like God gave me an incredible gift in Sam. I know I was a good mom before he was born, but now I am so much more the mom God intended me to be. I love teaching my kids and learning with them and dreaming about what is to come. Sam has slowed my fast-paced life and pulled me into the moment. I am fiercely protective of him. He is my little sidekick. When I’m sick or just feeling blah, all I need is a few minutes of cuddle time with him and things are brighter. He is pure. He expresses everything he is feeling, and is so quick to forgive. I get to see every single day that a child does not have to do the same things or reach the same milestones to be incredible. Sam has opened my eyes to the intense beauty in every human being. I love more deeply and feel more passionately. He has made my life far more beautiful than I ever could have imagined.
Thank you so much for joining us through these 31 days of Down Syndrome Awareness! It has been such a joy to meet so many families who have loved ones with Down syndrome. To visit the posts again, simply click the image below!