Celebrating World Down Syndrome Day by Sharing Our Diagnosis Story

Well, this post is LOOONNNGGG overdue, considering my son is now nine months old! I had every intention of writing this post last Spring after I had time to process all my feelings, but then COVID happened. And then Logan was born. And then I went back to work. And then it was the holidays. You get the picture. So I'm here now, on World Down Syndrome Day, to share our diagnosis story and journey thus far.

My husband and I tried to conceive for over a year before getting pregnant with Logan. We had a previous miscarriage before our eight-week ultrasound, so when we made it to ten weeks and the point when they do prenatal genetics testing, we were beyond excited. We knew there was a chance of a genetic disorder due to my age but didn't consider it much. We just wanted to know the gender so we could start planning.

I received a call from my doctor's office the Friday before Christmas. It was a nurse from my OB's office with the results of our prenatal testing..."89% chance of having Trisomy 21" was all I heard. I sat and cried while the life I dreamt up of our family was being erased one image at a time in slow motion: vacations to the beach, birthday parties, first-year milestones of rolling, crawling, walking and first words, playing with cousins, the moody teenage years, first dances, graduations, weddings, grandkids. My heart broke as every image flashed in my mind. And now I had to go home and break the news to my husband.

I knew how my husband felt about having a child with special needs. I was crushed to be the one to cause him so much pain. While the details of that conversation are very much a blur, I remember lots of crying, sitting in silence, staring, and more crying. We told our families over text messages because we couldn't bear to say the words out loud. We ditched our gender reveal plans and backed out of our usual Christmas events. We just wanted/needed to grieve.

We thought if we proceeded with this pregnancy, our child would need care into his adult life. There would be a high chance he would have medical issues and need painful surgeries. His intelligence would never be more than that of a seven-year-old. He would have speech impairments if he could even speak at all. He wouldn't even look like us. And more than anything, we were devastated about how our child might be viewed by our friends, other parents, other children, and the world. These assumptions were all wrong, but at the time, those were our fears.

My husband and I were at odds on how to proceed. If I got my way, would he resent me? If he got his way would I resent him? Both options seemed like it would end in divorce. It felt like our world was crumbling. We were in a pretty dark place for a few weeks. There were tears every day. We pleaded with each other, tried to strike deals, tried using research and facts to change the other one’s mind. We were painfully honest and vulnerable with each other. And at times, it didn't seem like our marriage would survive. But somehow, we came out the other side, and after confirming the diagnosis through amniocentesis, we were ready to move forward with the pregnancy one day at a time.

My pregnancy was so different than I imagined it would be. It was harder to celebrate the milestones, the first kicks, a growing belly, decorating his nursery, while not knowing what the future would hold. During every ultrasound, I held my breath, praying for a good report. And then I had to see the faces of pity and caution when the ultrasound tech and doctor would remind me my child had Down syndrome like I didn't already know.

I not only had to research how to care for a newborn, how to care for myself after delivery, and what labor would be like, but I also had to research what to expect when caring for a child with Down syndrome. I had this weight on my shoulders to be the one with all the knowledge. I guess that was the mother in me coming out. I had to educate my husband and our family members to be prepared for his arrival. What might his limitations be? What health issues might he have? What were the best products and toys for his development? What bathtub, car seat, and high chair were best for a baby with low muscle tone?

I wanted to be super prepared and educated and know all the possible issues so I wouldn't be caught off guard like I was with his diagnosis. Doing the research helped me cope. It helped me feel strong enough to bear the weight of all the decisions, the fears, and the disappointments.

Now that Logan is here, I can say with 100% certainty that our world is better with him in it. I had no clue what unconditional love was until I held him in my arms. The moment I met my little Logan boy, all my fears, worries and disappointments disappeared.

We are only nine months into this crazy ride, but Logan is more like a typical baby than he is different. He eats, sleeps, poops, and plays. He gets fussy and cries when he's hungry. We've dealt with very common baby issues like reflux and constipation. And as for his appearance, he does have characteristics of a person with Down syndrome, but he also looks very much like us. He has my husband's big blue eyes and long eyelashes. He has my fair skin and expressive face. Some days he looks just like our nieces and nephews and siblings.

Logan may take a little longer to reach certain milestones, but he does eventually conquer them. And those moments are even sweeter when he does because it's clear how much harder he has to work to achieve those milestones.

I will share that it's not all rainbows and sunshine. Every week, we have physical therapy and occupational therapy sessions to give him the best shot at hitting his developmental milestones. We have doctors' appointments and medical tests to ensure he remains a healthy, thriving child. We are more cautious about changes to his usual pleasant demeanor because seeing potential medical issues at every turn is part of the journey now. And sometimes, it's all overwhelming. But one look at Logan, and the overwhelm doesn't matter.

I have no idea what his strengths or opportunities will be as he gets older, but I know that I am all in. I will be his biggest cheerleader and help will achieve whatever goals he sets. I will advocate for him in any way I can because his life matters, and he deserves to be treated with kindness, love, and respect regardless of his genetic composition.

I truly believe Logan was brought into our lives to teach us how to be kinder, more patient, and more accepting. Down syndrome was not represented in our family, but now our nieces, nephews, and friends' children will all get to grow up knowing a person with Down syndrome and be better people for it. Logan has changed our world in so many ways and he doesn't even know it.

If I could go back to my past self and tell her one thing, I would say: "Stop robbing your present joy by worrying about your future life. It will all be okay. The love you will have for your child will outweigh all your fears. He will change your life in so many amazing ways. You will be filled with joy and pride every single day just by looking at him".