Monday will mark twelve years since my life was cracked open. When the ground beneath me swallowed me without warning, without a moment’s thought of what that buckling would do to me. To us. To our family.
I was so foolish back then. Thinking I could control everything. Organized, plans, and back up plans.
Go to the hospital. Have another baby. Go home. Remember what sleep deprivation feels like. Adjust to life with two little ones.
My first inkling that things weren’t going according to my plan was when Ian decided to come early. I was supposed to have a May baby. Yet here I was in early April, not ready, in labor and delivery. One hour into Easter Sunday, I birthed this soul who would be my own rebirth.
Only whispers, no words of congratulations. Everyone huddling around my baby. I was so disconnected from that moment, watching myself. Jason emerged from that huddle, the truth written all over his face, even as he told me nothing is wrong.
Me literally crying out, “Will someone please tell me what’s going on?” Then those two little words: “Down syndrome.”
An hour later, Ian turns dusky and off to the NICU he goes. Jason crawls into bed with me in my recovery room and we whisper. In comes the doctor and a resident. I will never forget the resident, a young man with red hair. I often times wonder what he saw in the moment. Two young parents clinging to each other in a hospital bed as their world was crumbing around them.
I will also never forget when he told us that Ian had a heart murmur, how he wasn’t sure that he had Down syndrome until he heard his heart. And then he knew. I don’t even know what we said. I do know we never saw him again. They walked out and we were all alone in the darkness.
I remember later that day going into the NICU, seeing Ian under an oxygen hood and being asked if I wanted to hold him. It took two people to gather up my baby and all of his wires and put him in my arms. And I tried so hard not to cry in front of all these people but I couldn’t, all those emotions came pouring out. I cried for him, for me, for Jason, for Joey, for everyone who loved us. For all the rest of my days, this will be the dividing line of my life. Before and after.
I took a break from visiting him in the NICU, walked out of those doors and took a deep breath. I am not sure if it helped but breathing the air outside of the NICU somehow felt different, maybe not as heavy? Then the nurse practitioner finds me and Jason and ushers us into a Family Room, holding the door open with a “Your Child Has a Congenital Heart Defect” booklet in her hand. She goes on to describe his broken heart and the open heart surgery to come. I glanced at the clock on the wall. It was 9:00pm. I looked over at Jason and said, “How your life can change in 24 hours.”
A few days later we came home and our baby stayed in the NICU. I still remember driving up and seeing this big, beautiful basket filled with spring bulbs sitting on our front porch. It was from my parents and the card was filled with words congratulating us on Ian’s birth. Shamefully I felt as if we had nothing to celebrate. I carry the weight of that shame to this day. I put that basket on the counter and the aroma of those flowers filled the kitchen. I couldn’t even look at them but I could smell them. A reminder of how everything had changed. At some point, Jason planted those bulbs out front, deep into the ground.
The next day Ian came home. And it turns out, I did go to the hospital to have a baby. I quickly remembered what sleep deprivation felt like. I adjusted to being the mom of two kids. Joey’s deep love of Ian and seeing their bond grow meant there were actually some times that I didn’t think about Down syndrome.
It was love that sustained me, that still sustains me. The love of my boys, my family and friends. The deep love I had for this precious soul — he was my baby. And I have said it before — but the deepest truth in this entire journey is that I never had a baby with Down syndrome. I had Ian.
There was hard stuff too, of course. Stuff I had never done before. Time when I felt so alone and lost. So much therapy, Infants and Toddlers, PT, OT, speech, IFSPs, IEPs, assessments and more assessments, assessment reports, IEP meetings, doctor appointment after doctor appointment, open heart surgery, advocating, so much worry. But there was also progress.
Progress for all of us. Every year after Jason planted those bulbs, I’ve watched and waited for them to push out of the darkness and into the light. Seeing the peeks of green growth and the sunshine pulling them up, their pedals stretching and opening. Those flowers blooming at this time each year are a reminder that I can do hard things, a reminder that I have grown too.
Well, this year was different. I didn’t keep watch. I didn’t feel like I needed to. One day, I just looked over and there they were. Tall and strong.
I used to need to watch every step of their growth — my annual cleansing. To remember where those bulbs started, how they were plunged into darkness and clawed their way out towards the sun. It was a metaphor for me — clawing my own way out of the darkness. But now, nearly 12 years into this journey, I am living in the light.
There are moments of hard, moments of darkness. But the hard is never, ever Ian. I’ve always said the hardest part of raising a child with Down syndrome is not my son with Down syndrome — it is everyone else. Barriers for no reason other than that’s the way things have always been done. Outdated stereotypes — both that he is an “angel” or inherently incapable because of that extra chromosome. Limitations based upon others not seeing my son as just like them — a deep, complex person trying to figure out and enjoy life, just like the rest of us.
I allow myself some time to wallow in that darkness, in that sacred space where my foundation is shaky. I let myself feel those deep feelings of fear and anger and worry and exhaustion, then take a breath, lean on those who love me, and climb out. Towards that sun. Sharing his truth and shouting his worth. And lately, letting him do his own truth-telling and worth-shouting.
Growth comes in many forms. I used to need that reminder of my brokenness to see how far I have come. Now I just look at my son. Because that baby cracked my world right open and it was only he who could fill it back up. The one who saved me when I didn’t even know I needed to be saved.
Happy 12th birthday to my Ian!