The Lucky Few

Hi Friends!

It’s been a while since I had time to sit and put my thoughts to paper, or in this case, to the keyboard. However after pondering over some negativity towards my beautiful baby boy the other day I decided it was time to jump back in and share some feelings and thoughts I haven’t before. To help others from all walks of life know and recognize: Down syndrome is beautiful. After Bennett was born in May, I joined a New Moms Support Group, and one thing that everyone kept harping on was the importance of journaling, a healthy and easy way to get my thoughts out to help see where I started, where I was now and where I hoped to go in the future.

So, as I sit here in our playroom watching my perfect and healthy little boy transform into this rolly polly babbling baby I can’t help but think about the “if I knew then what I knew now”. After learning and hearing from so many other moms in all sorts of other groups I’ve since become a part of, I’ve come to realize so many of us went through the same emotions that we didn’t know how to express. I think I’ve been given the gift from Benny, and his extra special chromosome, to share the beautiful and amazing side of Down syndrome with the world and I promise to do so from now until the end of time. Before you read any further I should warn you, this post includes some sections that may be a trigger for you, including a tough pregnancy, birth and NICU stay.

When I think back on that Tuesday afternoon in January when the doctor called and told me “your baby has a high, 92%, chance of Trisomy 21, hang in there and call Maternal Fetal Medicine for an amniocentesis and to discuss your options”, I can’t help but think about the unexpected sadness I felt in what he was telling me. What do you mean? How could this happen? What will my two oldest children think and more importantly will our new baby be able to live a long healthy and happy life? The next four days felt like a blur, I met with MFM, declined an amnio, talked with some counselors, a few family members and close friends and then had a Zoom call with the doctors and advocates from The Boston Children’s Down syndrome Clinic. We learned that people with DS have a %50 chance of being born with a heart defect so I was scheduled for a fetal echo, which came back that our babies heart looked “perfect”. A quote I will never forget following Benny’s open heart surgery he underwent at 2 1/2 weeks young. Those four days in January were tough for all of us, I did a LOT of crying, mourning and walking around in my own uncertainty not knowing what to do, how to think or really what to feel, until that Saturday night when I was reminded everything would be fine in the end. After four nights of not wanting to “mom”, giving my then 3 and 4 year old’s frozen chicken nuggets and mac and cheese for maybe the third dinner in a row, my oldest looked at me bluntly and said “when are you going to cook us dinner and eat together again like a family”. And it was in that moment I cried my last tear for our situation and started to embrace it, realizing we are all going to be fine, and our kids don’t care about anything other than just being a family (and maybe some variety in their food).

Over the remaining four months of my pregnancy we did our best to educate ourselves and prepare for the possibility of welcoming our little homie with an extra chromie. Since we never found out the gender of our third baby the unknowns on all sides were scary but also so exciting to experience.

Following an awful and traumatic birth for me and Bennett, where I remember standing in the bathroom while the birthing room nurses whisked him away to be incubated, I started to doubt my certainty that I could be a strong mom. They moved him directly to the NICU where my husband followed him while I sat in the BU recognizing I didn’t care about any sort of diagnosis other than making sure our baby was safe. Thankfully, with the help of the most amazing NICU staff that I will forever be grateful for, he was, and after two days of stabilizing Benny had an echo where we learned about his Congenital heart defect. Hearing about his heart was a harder diagnosis, a thousand times over, for me since we were under the impression his heart was in great condition. After some positive strides in the NICU followed by a few stagnant days a repeat echo was done where we learned Benny’s CHD was worse than initially thought and he was transported by ambulance to Boston Children’s Hospital.

We took the first three days of Benny being at BCH as a blessing and a sigh of relief knowing he’d be in the most amazing hands and then on that Monday I got a call I was not expecting from a surgeon. “After monitoring Benny this weekend we’re going to move forward with surgery and we have a spot for him tomorrow at 8am”. Thankfully, I suppose, we did not have any time to process those feelings and by the time we realized what we were undergoing we were back in Boston the next morning and I was handing my two week old over to an anesthesiologist. After a five hour surgery Benny was finally on the mend and one step closer to making it home! It was during his recovery time that I met with the New moms groups frequently, I remember my first video chat with them I sat in Benny’s nursery in tears because he was in the hospital and all the other moms were snuggling their littles ones. They asked me “how are you dealing with your feelings of your babies diagnosis” and through the muffled sadness of him not being home, I told them the only diagnosis I’ve been thinking about the past few weeks was his heart defect. And in that response, I realized, how I wanted to live the rest of my life, making sure Bennett’s Down syndrome wasn’t the first or only thing people thought about when they asked about him. My perfect, now even heart healthy little boy, and these amazingly strong women, who lived through the same uncertainty and experiences I had, knew the brightness that existed on the other side.

So, if I knew in January what I’ve learned over these last six months as a member of the Lucky Few family, is that it will be difficult but it will unequivocally be so worth it. Our lives will be filled with so much happiest it’s hard to put into words. We will grow and lean on each other as a family during some of the darkest times and the little achievements from any of our kids will be that much sweeter. We will be filled with so much gratitude for the blessing that is our third baby it will become incomprehensible. We’d experience all those “first” we did with our typical children and my oh my would it be so amazing.

If I could go back and tell my January self one thing? It’s that a world without Down syndrome would be a sad place, and you are so unbelievably lucky to get to experience the joy of this community first hand in the most precious and perfect way and you will forever be grateful for it.