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. Unanswered texts, missed calls. Finally falling asleep.
Over the next several weeks, months even, I dealt with many fears, questions, doubts. I learned to find happiness and comfort in the small things. God has sure worked overtime on my heart the last 365 days and I am 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 that my blood pressure wouldn't rise and that 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 didn't need oxygen. You were quickly out of your isolette. You grew stronger every minute.
I'm sorry for basically yelling at the hospital chaplain that 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 had heard wrong or that I was dreaming the night before when I learned about your diagnosis. That if I just didn't see anybody that 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. Oh goodness, they're sending the chaplain in to pray with me, he really must have Down syndrome. 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 that he would pray for you. I wish I would have prayed with him because that's exactly what I needed that moment.
I'm sorry for worrying about your sister. In those first weeks, I felt bad for your sister. We were going back and forth to the NICU leaving her at daycare or with friends. I felt terrible that she was without us, without you. I constantly fretted over her future, worrying about how she wouldn't have a "normal" sibling relationship, concerned that she would ultimately become your caregiver one day, anxious over whether she'd have to endure people teasing you. I came to realize though that God didn't only choose your dad and I, but your sister too. He knew he would have to give you a sister with a cheerful heart, quick wit and tough-as-nails attitude. But he also knew that she needed you. That you would teach her compassion and patience. That 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 that I possessed and I'm learning that 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 that here we are at a year, and I'm still wishing you'd sit up sooner. I can promise you though that 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 that after spending an entire year with you, I am not sorry that you have Down syndrome. I have grown to love your extra chromosome because it makes you the perfect, smiley, loving, opinionated little boy that I have the privilege of calling my son. Watching you grow up this year, I have 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 are here - that God picked us. That God knew that 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
