What I Would Tell Myself (And Others) After Getting A Down Syndrome Diagnosis

I can’t help but sit here and rock Kaleb as I think back on this day two years ago. September 3, 2015. Tonight I sit here cuddling him as we share in a few last smiles and giggles, and I can’t help but think of the difference in three years.

It was three years ago today that in between a rundown of his health I heard the words, “Results came back positive for Trisomy 21.” Three years ago, I thought my life was over. I have often thought about what I would say to myself if I could go to that day and try to reassure and encourage myself. While I’ve thought about it, I wasn’t sure I would have done this even if it were possible. Because in those hours following that statement, I wouldn’t truly be ready to hear or believe it.

It is also a hard concept because of the belief that I feel the way I do now because of walking through all of those feelings, the good and the bad. However, on this night as I walk down memory lane, here is my letter.

Dear me,

Wow, three years later it still takes my breathe away as I think about the hours that followed the words Trisomy 21 and Down syndrome. So I know and still vividly remember the way you are feeling. It’s intense combination of feeling numb and feeling like every nerve is raw and exposed. Don’t worry, I’m not here to chant inspirational and motivational mantras and that it is all going to be okay and God only chooses special people. Okay, I will once, “It’s all going to be okay.” There I’ve said it. I’ve said 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 okay to feel your feelings.

Go ahead, grieve the baby you had envisioned, you will learn that there is a better one growing on the fifth floor of the NICU. Go ahead, worry about Kaleb, but you will learn that it is often Kaleb who will teach you lessons on trusting and accepting. Go ahead, worry about your career, but you will see that Kaleb has enhanced it by fueling a passion to educate others. Go ahead, worry about your family dynamic, but you will see that two years later it’s a strong family of four. Go ahead, worry about Kaleb and this potential, but know that 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 that 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 recognize my son surrounded with this medical file and uncertainties?

But let me tell you, that 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. That day when you are holding him and this quote settles on 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 okay to cry in the shower on those days you feel overwhelmed. It’s okay for your heart to ache when you see him work so hard for things other take for granted. It’s okay, 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 that 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.

Hear what our real-life Scary Mommies, Keri and Ashley, have to say about this when they give their (always real) thoughts in this episode of our Scary Mommy Speaks podcast.