As I lay on the hard table in the cold room, I was so warm, ready to drift off to sleep before reminding myself that my life was about to change forever and I needed to stay awake. Then I heard him… my Joey, the one who made me a mom. Jason disappeared to welcome our son to the world, cradling him in his arms and bringing him for me to see. Yet all I could think of was the question that had been plaguing me throughout my entire pregnancy. “Does he have Down syndrome?” I asked. My husband looked perplexed as he told me no and I tucked that question back into my heart.
Fast-forward nearly four years, as we prepare to welcome Ian, and I again ask my OB the question that had been nagging me, “What if the baby has Down syndrome? How will you tell me?” Six days later, I would hear that answer in real life. Everyone was standing around my brand-new baby, whispering. No congratulating, only hushed voices. Even Jason could not speak the words to me; I saw a look on his face that day that I hope to never see again. Finally, someone talked to me. They told me Ian had Down syndrome before I even held him, before I even saw him. I didn’t know if he had hair, if he looked like his brother, if he was short and chubby or long and lean. I was handed a diagnosis and not my son. I was so very scared as my mind raced to process how my life had changed in an instant. I felt completely numb, as if this was someone else’s life, not mine.
Then I remembered Joey… and pain seared through me. I had not even thought about what this would do to his life, to all I had dreamed for these brothers. I could not yet know that I had been given a great gift. That life was never going to be the same, but in the most amazing way. When I think back to that moment in my life, I see it all with perfect clarity as if it just happened yesterday. And if I could go back to that broken woman, I would take away all of her pain and fear. Tell her, in the words of Sara Groves, that “redemption comes in strange places, small spaces.” That her life had begun anew that day, that she would never be who she was before, would never want to be who she was before. That Ian’s birth on Easter Sunday was a rebirth for all of us. But in that moment, all I had in front of me was this vast unknown that terrified me.
Seeing our little Joey peak into that room to meet his brother for the very first time made my heart ache in ways I never knew possible. All I could think of was what would his life be like? What would this do to him? It seemed like it took him forever to cross the expanse of that room, his eyes full of anticipation. He carefully climbed up into the bed with us and met his baby brother. And then it happened. Joey just saw his brother, not a diagnosis. He loved on him, kissed on him, smiled at him. Was in awe of him. He showed me how to see our son. Joey began to heal my heart that day and in the days and weeks that followed, never seeing a diagnosis, only Ian. He has always only seen Ian.
Fast-forward now over seven years later and life is full of everything we thought it wouldn’t be. Full of everything we thought they wouldn’t do together… riding bikes, swimming, playing at the beach, going to Orioles games, talking, playing games, wrestling, chasing each other, playing baseball, kickball, basketball and Wii. And these have become “stop everything and take this in” moments, “this is what matters in life” moments. Sure, they argue, annoy, yell and fight because that is life. But they love and cheer and support way more. Their bond is something I cannot put into words; trust me, I’ve tried and cannot do it justice. It is like love multiplied, love to the tenth power.
And not everything is perfect. Because nothing in life is perfect. But it is so very good. I do have moments, little pangs of something… an emotion I cannot put into words. It comes from a longing that things were easier for my hardworking Ian, that the differences that make things harder or different for him weren’t there, like always being understood when talking or keeping up with friends. Or when I see all the neighborhood kids get off the school bus and run home while I wait for Ian’s special ed bus to come to our house, dropping off my daily dose of sunshine as I wait with a grateful heart for all that he has done to change my life. Then as Ian and I walk into the house where Joey is already waiting, I am reminded that even if some things are a little different, they are not less. And Ian is never less. And the irony is that the differences give us the gift of perspective and gratitude. As Joey greets Ian each afternoon, my heart is happy. Joey still only sees Ian, never a diagnosis. He only sees his brother. The bond they have is my life’s greatest joy and parenting them will be my greatest accomplishment. Two beautiful souls perfectly intertwined.
And for as much as some things are a little different, my heart overflows when I see Ian do things that I never thought he would do… read, have great conversations, ask us good questions, be smart, fun and funny, be confident in this world, play ice hockey and baseball, have friends, get invited to parties, be included and loved and celebrated, tell me, “I love you” and that I am his “perfect mom.” All of that stuff that I would otherwise take for granted if it weren’t for that extra chromosome. I get to raise a kid where every single thing he does is amazing, and I am grateful I get to live a life like that. And for every single little thing and big thing, there is Joey, Ian’s biggest cheerleader. Always seeing his brother, never a diagnosis.
My greatest regret in my life will always be that I cried the day Ian was born; I will spend the rest of my life making it up to him. But the greatest epiphany of my life will always be Joey showing me how to love. That day our life changed for the better and every day since. Joey healed me when I didn’t think anything could heal me. Ian saved me when I didn’t know I needed to be saved. These boys whose bond make each other better people make all of us better people. It is a privilege to be their mom.
About the Author: Laura Feiler is married to her best friend of nearly 17 years, a mom of two awesome boys and the only other girl in her house, their yellow lab Sunny.