How are you today? It’s been 6 months since your beautiful son was born 6 weeks early on September 16th, 2014. On April 24th, it will be a year since the day you thought you were going to lose him at only 13 weeks pregnant. The same day they told you in the emergency room that something was “wrong” with your baby, and 12 long days later, you got the phone call confirming he had Down syndrome. I’ll never forget any of those moments, will you? I didn’t understand what a cystic hygroma or AV canal defect of the heart meant. I didn’t understand why he stopped growing at 32 weeks. I was overwhelmed with medical terms and statistics and all the “what-ifs” for what his life could be like. But what I DID understand was that none of that mattered to me, he was our son and nothing about his genetics would make me love him any less.
I spent months searching the internet for support groups, reading articles and looking for any resources that might help prepare me for the journey I was about to embark on. Everyone wants to be a great mom, but I was determined to be the best mom I could be for my son. Remember how hard it was telling your family and friends that your baby had Down syndrome? Most people were 100% supportive and loving, but a few gave the “I’m so sorry” sympathetic head-tilt. I give you a lot of credit for being so brave as to tell those people “please don’t be sorry, there’s nothing to be sorry for, we are so proud of our son already!” There was that awkwardly sad few months when no one wanted to talk about him and it almost seemed like they’d rather pretend you weren’t pregnant than ask about your baby for fear of offending you. I didn’t understand why no one wanted to know about his nursery colors, or names we had thought about, or even how excited his big sister was to get a baby brother. I was so mad to think that our family and friends would consider him to be anything but “normal.” Eventually I let that anger go, and decided that I would do everything in my power to show my love for my son to the whole world and just hope that everyone else would love him just the same.
I couldn’t wait to meet him, but when I found out he was going to be born 6 weeks early, I was terrified of all the possible complications. Nolan amazed us from the moment he was born. He fought so hard to defy all those possibilities. Just 12 days later, we got to bring him home from the NICU. Remember how overwhelming those first few months at home were? Early intervention services like PT/OT, and it seemed like we had multiple doctor appointments every week.
And then he was in heart failure…I knew it was coming, I thought I had prepared myself, but until you’ve experienced it firsthand with your own child you will never understand how scary it is. The day of his open heart surgery was quite possibly the worst day of my life; it became very real to me that I could lose him that day. But guess what? I didn’t…he’s here with us today, smiling, and no longer struggling to just breathe!
There’s no way to know what his life will be like, but there’s also no reason to worry about it. A good friend, whose son also has Down syndrome, gave us the best advice after Nolan was born. He told us not to worry about tomorrow, or the next day, or the one after that, but to just focus on the NOW. Enjoy every happy moment, cry during the sad ones, and just wait to be amazed as he takes on the world. I tell Nolan I love him constantly, and I promise him every day that I will always support him and advocate for him. He will do great things in this world, I am sure of it; he may just take the scenic route to get there while he enjoys every step of the way.
Stay strong, you’re an amazing mother!