A Letter to Myself Two Years After My Son's Down Syndrome Diagnosis
Dear me,
Wow, two years later and it still takes my breath away thinking about the hours that followed the words, “trisomy 21” and “Down syndrome.” So I know and still vividly remember the way you feel. It’s an intense combination of feeling both numb and feeling like every nerve is raw and exposed. Don’t worry, I’m not here to chant inspirational and motivational mantras and say that it is all going to be OK and God only chooses special people.
Okay, I will once: “It’s all going to be OK.”
I say it because it’s true, but I know you are not ready to hear it, let alone believe it yet. What I do want to say is, it is OK to feel your feelings. Go ahead, grieve the baby you had envisioned, you will learn there is a better one growing on the fifth floor of the NICU. Go ahead, worry about his big brother, Kaden, but you will learn it is often Kaden who will teach you lessons on trusting and accepting. Go ahead, worry about your family dynamic, but in two years you will see it’s a strong family of four. Go ahead, worry about Kaleb and his potential, but know he will show the way and surprise you with each twist and turn.
The following is a quote from “The Chaos of Stars.” It is often said at weddings or in letters to a fiancé or spouse. One time, not far from where you are now, I read it shared with a picture of a parent with their medically complex child. It made me love the quote even more. I saved it. I’ll admit it was something I questioned. I wondered in my heart of hearts if I would truly feel this way. In the beginning, I admit I questioned. I questioned whether I was ready to sign up for this unknown. For potential health issues, potential delays and all kinds of other unknowns. Would I see my son and recognize him surrounded with his medical file and uncertainties? But let me tell you, as I watch our son’s personality grow and I watch him live and love… it is true. So read this, keep it, and know that you will have that day when you are holding him and this quote settles in your heart and you know just how true it is. I’m not going to tell you the day, because it will be that much sweeter when it sneaks up on you and happens.
“I didn’t fall in love with you. I walked into love with you, with my eyes wide open, choosing to take every step along the way. I do believe in fate and destiny, but I also believe we are only fated to do things we’d choose anyway. And I’d choose you, in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.” — Kiersten White, The Chaos of Stars.
So go ahead, feel your feelings, all of them. Work through them at your own pace. It’s OK to cry in the shower on those days you feel overwhelmed. It’s OK for your heart to ache when you see him work so hard for things others take for granted. It’s OK, because for each of those days there will be even more days filled with happiness and joy. Right now, you are sitting in postpartum room 2213, and all that seems to be screaming through your head is Down syndrome and why. Know the day is coming when you will look into his big, beautiful, brown eyes and say with all of your heart, “I’d choose you.”
In any world or any version of reality I’d recognize him as my son and I’d choose him, time and time again.
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Amanda is a professor, writer, and founder of the nonprofit, Mighty Miracles Foundation. However, her favorite titles are wife and mother. She is the mother to two boys. Kaden, is a sports crazy, baseball obsessed, kind hearted, old soul who is six year old. Kaleb, is their ornery and stubborn three year old who has shown since birth he was writing his own rule book. Kaleb was born at 28 weeks at 2lb 2oz and a birth diagnosis of Down syndrome diagnosis. Since he has also added cerebral palsy to his medical file. Kaden teaches the Dickinsons new life lessons as he continues to grow and enter new stages in life. Not to be outdone Kaleb is determined to show life from a different perspective.
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