Part 1 – The Worst Day
Part 2 – A Screen, Not a Diagnostic
First, some words to Chuck: I’m lying here with you in bed as I compose this. It’s crazy that you’ve only been here for 6 months, crazy that everything I’ve described over the past few days was a year ago. If someone had told me then how normal life would feel today, I’d never have believed them. Everything was so crazy starting from the time I got pregnant with you.
Things I didn’t mention before but have struck me as significant as I’ve been writing:
There were songs I couldn’t listen to.
Ooh child, things are gonna get easier.
Ain’t no mountain high enough to keep me from getting to you, babe.
And now as I lie here, nursing you, all I wish is that I could go back and comfort all of us. It’s the fear of the unknown that’s truly terrifying. Whatever is coming, it’s part of you. And we’ll do anything for you.
I wish she’d never done that test. I wish I’d gone through our pregnancy in ignorance. Or that someone kinder had broken the news. I wish there’d been a better start to me and you. But we started again the day you were born. We started again the first time I held your little self against me and promised to be your mommy for now and always.
I was so scared, baby. I was scared that life as I knew it was coming to an end. But I’d forgotten that with each step, it’s a new life. When I married your father, when we had your sister, your next sister, your brother, each time we moved. And here we are, at the other end of a traumatic year, and I’m holding a miracle.
As soon as you were born people were telling us that we were amazing. Warriors. Champions. And I wonder if they understand that we’re just your parents. That you’re just a baby. Do I get a gold star because I brought you home from the hospital? Do I deserve a medal for loving you and being your mom?
In all the chaos of the beginning of your life, one moment particularly sticks out to me. The weekend of your birth, my father sat with you and held you for the first time. You wrapped your fingers around one of his. He looked at you adoringly and said “Hey there, Chuck. I davened for you every day.”
I don’t ever want you to think you were loved less because of all of this. Our love for you is so deep, so profound, that when you were barely more than a zygote we cried for you.
I was 37 weeks along. I’d started leaking fluid. I called Dr. Jacob, the amazing OB I switched to mid-pregnancy and asked her what to do. She said to call back if it happened again. When it happened again I called back and asked the what the plan was. She said, “Come to the hospital, you’re having your baby!”
The night started on a great note. The kids were home from school with a friend over. A neighbor came to watch them. I grabbed my bag, ready to go meet this baby, and the kids joined hands and began dancing in a circle, singing “We’re going to meet Chuck!” I kissed them and walked out the door. I was so thrilled to be putting a long and difficult pregnancy behind me, and anxious in every sense of the word to finally see you.
I had only gotten the all-clear from Dr. J (as I like to call her) about a vaginal birth a few weeks earlier. That pesky massive fibroid had been sitting low and stressing me out. Which is great. I had such an easy pregnancy, I really needed something to worry about. Is my sarcasm font broken? When we saw it start to lift in the monthly (and then weekly) scans with Chuck’s head beneath it, we knew it would be okay.
The nurses were nice and we were all joking around. They got me on a Pitocin drip sometime between 10 and 11. It was not super pleasant. That cushion of fluid was gone, and I didn’t want an epidural. But my head was wrapped up in something more than the sensations of labor. I was beyond anxious to meet this little one. We were about to go down one major path or another, and I could see them yawning ahead of me, stretching out into an infinite future.
Chuck was born around 2:30 am. My OB held him up, looked at him, and told me in her steady voice that he had Down Syndrome. She handed my newest love to me, and I clutched him against my chest. For a few minutes, I just sat there, feeling raw sadness. I rocked him and whispered, “I’m sorry. I’m so sorry.” My heart broke for this beautiful little child who wasn’t getting a fair start. Eventually, I handed him over to Avraham and he sat and gazed at his face.
That was the easy part of the night. Within 20 minutes I was in the OR, having my placenta manually removed. Chuck was in NICU. I hadn’t even seen his face. I asked Avraham to get a picture of him for me, and as I made my way from recovery to my hospital room I looked at this new little stranger on my husband’s phone, a mix of our 5-year old and some typical Down Syndrome features.
For the first 12 hours of his life, this was all I knew of my son.
Because of the blood loss, I didn’t get to a room until 10. I had to wait for my strength to return enough to move to a wheelchair to go see him. At 2:30 that afternoon Avraham brought the kids and we all went to see our Chuck. I finally got there only to hear I had to leave before I could hold him. I got my hands on his little body, we lifted him up so his siblings could see his face, and we left. I was still too overwhelmed by physical exhaustion to even register my disappointment.
I got back to my room, and a social worker was waiting there. We talked for an hour. We mostly talked about our lives, and only very lightly touched on special needs. She gave me booklets and pamphlets and told me they’d be waiting for when I was ready.
I was not ready.
I didn’t get back to the NICU until late that night. I rolled up, scrubbed in, and went to his room. He wasn’t here. After starting his life having trouble with his temperature, tone, tongue thrust, and blood sugar, Chuck had stabilized and recovered so well he’d moved up to the next room in NICU. I rolled in, looking around the room, trying to find him. In the far left corner, swaddled under a beautiful blanket, was my little boy. I sat in the wheelchair, watching him sleep. I gazed at his tiny face, his sweet features, and my heart filled. A nurse watching me must have seen the raw hunger on my face. She walked over and asked if I wanted to hold him. Honestly, was there anything I’d ever wanted more?
She put Chuck in my arms, and right then the freeze that has accumulated since we got the call about DS just evaporated. I held him and rocked him and studied every detail of his face. I kissed him over and over, so grateful to be alive, so grateful that we’d be going home.
And for the next 2 days, I learned how to hold him without setting off alarms, without moving the IV and monitors hooked onto his tiny body. All I wanted was to be with him, to be able to take care of him. My arms ached for him.
I pushed to get to the NICU as often as I could while we were in the hospital, and when I got too tired to hold him I would put him back in the bassinet and watch him as I fell asleep in my wheelchair. It was all surreal. Here was my beautiful little boy, finally. He was so perfect and I was so grateful that we were both okay.
I was also scared. One of the first things they did was take him for an echocardiogram. At every turn, we were being told about issues they were monitoring for, symptoms we’d never heard about. We’d been warned about the increased odds for childhood leukemia and early onset Alzheimer’s. I didn’t know about potential gut issues, hip issues, thyroid issues. And everything they checked was coming back normal or barely atypical. It was hard to process the enormity of what we were being told. It felt like we were just dodging one bullet after the next.
I was so in love with him and so terrified. I was heart-broken for the life I’d wanted to give him, scared I wouldn’t be enough to help him reach as far as he could.
And when I say these things to most people I get an instant “Oh you’re doing great! You’ll be great!” But I don’t know that. And you don’t know that. It’s not easy to raise a kid with special needs, literally no one who’s done it says so. Of course, I’m an advocate for all of my children, but Chuck will need me to advocate for him on a different level. Aside from what you hope for your child, there’s the question of whether you have the wherewithal to provide what they need.
The idea of loving someone who could get sick or die young is in itself scary for me. I’m scared that he’ll get sick. I’m scared that people will mistreat him. I’m scared that he’ll be vulnerable physically, emotionally, financially. I’m scared that we’ll die before him and he’ll still need us. I’m scared that he’ll die before me.
I was really hesitant when introducing him to our extended family. I didn’t know how people would respond. The morning we were released from the hospital, Avraham’s grandmother sat in NICU, cooing at him. My heart broke from happiness. It was amazing watching the kids with him. Chuck was born the day before our next youngest turned 5. When he came to see us at the hospital I asked if it was okay that their birthdays were going to be so close. He told me getting a little brother was the best birthday present he could have gotten. The relief of making it through, of holding him, and of having him surrounded with love had me on a high.
We told the kids about Down Syndrome the night we got back from the hospital. They had school the next day, and we weren’t sure who would have heard what. We started by talking about other kids they know with various syndromes. We discussed physical features as well as challenges. Then we moved on to Chuck. “You’ve already noticed some of the physical features. You’ve been asking why he looks different. Well, he has a syndrome called Down Syndrome. And the challenge for him will be learning some things more slowly than other people.”
As we worked together to switch from formula to nursing I watched this tiny human work so hard. At 4 days old he was full-time nursing, and able to have his brit mila on time.
We moved when Chuck was 1 month old. He had his cardiology follow-up, and a few hours later we were in the car, leaving New York. The next week he had his intake for Early Intervention (EI). This kid has blown me away with what he can do. His service coordinator sat with me on the floor that first day (our furniture hadn’t come yet) and marveled at him. He’s alert, social, strong, and a complete flirt. He has no delays. He has 1 hour of therapy a week, and we switch off between OT and PT. At 6 months old he rolls both ways, is learning to sit, trying to get his knees up under himself to crawl, babbling, yelling for our attention, playing with toys, and learning object permanence. He’s started on solid food, and this child is doing so well that his OT wants to videotape him to show his students what’s possible with Down Syndrome.
I look at him, at his sweet little face, and I struggle. I see my baby when I look at him. I see my Chuckling who can do everything his siblings did. But I also know that delays are coming. I know there are challenges ahead, and I can’t get used to things being so easy. And much like I struggled throughout the pregnancy with the balance between acceptance and hope, I struggle now with the balance between just seeing him as Chuck and not letting myself get caught up in some dream that he’ll somehow beat DS. There’s a whole lot he’ll be able to do in life, but that’s not one of them.
He is my baby, and I want life to be good for him. That’s not it. I want life to be perfect for him. And my perfect never included the challenges he has coming. Every achievement, every milestone feels worthy of being celebrated. I have to keep it in check, though. There are 3 other children in this house who don’t get a party every time they learn a new skill.
It hurts that I can’t fix this for him. It will always hurt. Someone (again, well-meaning) told me that by the time he’s 20 I won’t care anymore. But there’s no magical time frame at which you stop caring. There are no glasses that block out what everyone else is doing, how easy other people his age will have it when he’ll have to struggle. Will I somehow not notice when the other kids his age are dating? Working? Going to college? Getting married? And sure, there are people with Down Syndrome who do each of those things. But having won the lottery with his health, with his strength, with his tone, do I have the right to hope he’s won the lottery on cognitive function as well?
I will care at 20. And at 35 and at 60. Because I love him. Hurting for him isn’t about a lack of acceptance of who he is, but the occasional thought of that parallel life, that other reality that could have been for him.
We have found a varied and vocal community of families like ours. I have found my niche amongst the weirdos, with the inappropriate humor, the honest stories about what life is really like. And we have you.
You have my heart, Chuckito.
All photos: Dani Weiss-Bronstein