As I sit here writing this letter, its been almost 90 days since the birth of our son. It’s also been about 8 months since the prenatal confirmation of his extra chromosome. I look at him now sleeping ever so peacefully in his swing, a swing that was his older brother’s first, belly full of milk and his arms down by his sides. His sweet long lashes, chubby cheeks, and cupid’s bow shaped lips make me stare at him in wonder.
There was a time when I first received his diagnosis that I was terrified. I’d never known anyone with Down syndrome, nor had I ever heard anything good about it. When I received the confirmation of the diagnosis, a termination was offered either right then and there or scheduled for later- they made it sound so easy. I’d lost a baby before and remember how awful it was to pass a deceased baby from my body. I nervously asked how they would terminate and was horrified at the answers. To top it off he had a heart condition with less than 2% chance of survival according to the experts and medical journals. The other option they offered was to have him adopted at birth. Emotionally wrecked, I considered the lesser of the two choices, adoption. I had convinced myself that keeping him would be selfish, I was an older mother, and would not be able to be there for him later in his life, when I came to need help myself one day. I also worried how much my older son would feel neglected with all the attention I assumed the younger son would need. I was desperate and felt at the time that adoption was the most humane choice for him. My husband told me he would support whatever decision I made, which somehow made me feel even more alone despite his good intentions.
And the journey began..
I reached out to the adoption representative of the NDSAN. They were extremely gentle and kind to me and did not make me feel as harshly judged as I’d already judged myself. They sent me multiple family profiles, and I chose one. By chance, I wound up in their town for work, so I went to meet them. They were truly lovely people. They had three adopted sons, all with Down syndrome, a daughter of their own with the condition, and two ‘typical’ older kids of their own. I thought if I go through with this, these are certainly the people I would want him to go to. I also reached out to a local family that had adopted children with Down syndrome and went to meet them. I then reached out to the local Down Syndrome Association and met with some of their folks and met a couple of the families with kids with DS. As my journey of learning continued, I realized how wildly different each of the kids were, with the same interests and pursuits as ‘typical’ kids. I learned it’s not a prison sentence to welcome a child with DS into your family, the families I met still travel, the parents still went on dates, the kids went to normal schools, had friends, their siblings were adjusted (and maybe even wiser than children with ‘typical’ siblings) and engaged in many activities. I also learned that many children with DS want to live away from home when they are older and there are many options for them depending on ability. I also reached out to the DS research center in Denver, CO at Children’s Hospital, there I learned that there has been no recorded incidents of people with DS committing suicide or getting addicted to drugs, it’s just not in their makeup it seems. Having lost one of my sisters to heroin, I realized how much I’d rather have a child with DS than a child with a drug addiction. I can’t imagine the pain my parents went through watching my sister deteriorate at her own hand. At the center, the providers I met with had children with DS, other children, and careers- and seemed happy and healthy. I suddenly realized I could do this, and we as a family can do this.
I had been sad, down, and for the first time in my life without joy or drive despite being pregnant with a very much wanted baby. Once I made the decision to keep this baby and jumped in with both feet, the sadness lifted like a fog and I truly enjoyed what was left of my pregnancy. I dusted off my older son’s baby things, set up and painted the nursery, started researching local child care help, and brainstorming names with my husband.
As time went on, our baby’s heart condition improved until it was a normal healthy heart with no sign of damage. It was amazing to hear the doctor tell me if she had not known his history that based off this ultrasound she would have never known he’d ever had a problem. I cried happy tears the whole way home. I hadn’t even met him yet and he’d already taught us so much about hope and joy.
Three weeks and two days before his due date, I went to my doctor for a routine checkup. She found me almost completely dilated and I never felt it. She gave me two hours to get to the hospital where I suddenly went into active labor. The doctors offered me some pain management options, which I declined because I was so afraid his heart might still be delicate. Not even ten minutes later (I know, right? Crazy fast- first boy was 23 hours and a C Section), I was holding my little guy and overwhelmed with emotion, was crying like a baby right alongside him, I could barely speak, but I managed to get out “I love you.” He was one of the two most beautiful things I’d seen in my life, my older son being the other most beautiful thing.
Now he’s home, he’s so healthy and strong, and has a lot of opinions like his brother did at that age. Screaming means ‘no’ or ‘needs improvement,’ cooing means ‘yes.’ Just like any other baby. I’m not a mother managing life with a baby with Down syndrome, I’m just a mom with a new baby. I dress him up, I keep him clean, and I take great pride in poops and burps- just like I did with my first son. Lastly, my worries about my older son feeling neglected have vanished. My older boy takes great pride in his brother. My older boy is by no means sensitive or delicate, he likes to smash, throw, and leave a wake of scattered toys, yet he’s adjusted his pace around his brother and taken a genuine liking to him. He’s nick named him Ubbah (that’s the best he can say at 2), tries to comfort him when he cries, tries to feed him, and wants to carry him- of course that’s where I draw the line. My fears of the future are gone too, you never know what it holds, and I’m living for the moment, and this moment is great.
One Proud Mama