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Why I’m Apologizing to My Son With Down Syndrome on His Birthday

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My perfect Elliot,

It was late Monday evening when Dr. Ball came into my hospital room. We knew you had to come out within 24 hours, and we had to decide between that night or the next morning. I had a cold grilled chicken sandwich and chocolate chip cookies staring me in the face that I desperately wanted to eat. My nerves were on fire. I was so scared you would be six weeks early, but right then, your dad and I discussed how 7/7/14 had a nice ring to it. We looked at Dr. Ball and said, “Let’s go for it.”

The rest of the night is a blur of operating rooms, beeping machines and hushed voices. Your dad hovering over me, telling me you had Down syndrome. There were unanswered texts and missed calls. I finally fell asleep.

Over the next several weeks, months even, I dealt with many fears, questions and doubts. I learned to find happiness and comfort in the small things. I believe God has worked overtime on my heart the last 365 days, and I’m grateful. Those early days with you, I was terrified and I cried a lot. Looking back, there are few a things I want to apologize for.

I’m sorry for grieving over you those first couple of days. While I know that grief was a natural human reaction, I wish I could look back on how joyfully I received the news. Instead, I was emotionless, trying to stay calm so my blood pressure wouldn’t rise and I could leave the hospital. When I went to see you in the NICU for the first time, I looked for all of the markers the doctors said pointed toward Down syndrome instead of looking at how adorable you were. What I failed to see were all the markers that proved you were a fighter. You grew stronger every minute.

I’m sorry for basically yelling at the hospital chaplain who came to see me the day after you were born. He was the first person I saw the next morning, and I think there was a part of me that hoped I’d heard wrong or was dreaming the night before when I learned about your diagnosis. That if I just didn’t see anybody, maybe I could just hang on to my old life. When the chaplain entered my room, it felt like a punch in the gut. Seeing him made it real. I just wasn’t ready to face it yet, so I asked him to leave before he ever said a word. He politely obliged and said he would pray for you. I wish I would’ve prayed with him because that’s exactly what I needed at that moment.

I’m sorry for worrying about your sister. I felt bad for your sister in those first few weeks. We went back and forth to the NICU, leaving her at daycare or with friends. I felt terrible she was without us, without you. I constantly fretted over her future, worrying about how she wouldn’t have a “normal” sibling relationship, concerned she would ultimately become your caregiver one day, anxious over whether she’d have to endure people teasing you. But I believe God gave you a sister with a cheerful heart, quick wit and tough-as-nails attitude. And I believe he also knew she needed you because you would teach her compassion and patience. Because of you, she will know at an early age what truly defines success, what truly is the heart of life. You two are the perfect match.

I’m sorry for being impatient. I thought patience was a virtue I possessed, and I’m learning maybe I was wrong. I’m sorry for wishing you’d get out of the NICU sooner, roll over sooner, eat sooner. I’m sorry I’m still wishing you’d sit up sooner. I can promise you I’m learning every day to accept your timeline and your pace. I’m getting better about living in the moment and meeting you where you are.

But through it all, Elliot, I can tell you this: after spending an entire year with you, I’m not sorry you have Down syndrome. I’ve grown to love your extra chromosome because it makes you the perfect, smiley, loving, opinionated little boy I have the privilege of calling my son. Watching you grow up this year, I’ve felt a mix of pride, joy and thankfulness at each of your accomplishments, from the first bottle you finished in the NICU to sitting up for 30 seconds while playing with a toy.

Seeing how loved you are by family, friends and neighbors has been humbling. Hearing how the ladies in the church nursery fight over who gets to hold you warms my heart. Spending time as a family with you, our youngest member (but probably the mightiest), shows me how blessed we are that you’re here. I believe God knew we needed you.

Happy birthday, my sweet son. I have more love in my heart than I ever thought I could hold. Thank you for bearing with me.

– Your Mommy


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Originally published: July 15, 2015
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