13 Years

13 years ago you arrived at 7:11pm on a Saturday. You were immediately surrounded by love as your family held you.

Late that night, I held you in the dark and wished for a First Night of Motherhood manual. (Spoiler alert! There isn’t one…and if there had been, it wouldn’t have applied to me anyway)

Even later that night, my world went black. You were having trouble breathing. You were moved to the NICU. You had “features that resembled a syndrome.”

I called Daddy. We held each other in the dark. He said you would always be our baby boy.


He was wrong about that.

Because all of a sudden, you are 13.

In the NICU, the doctor hesitantly told us you had Down syndrome. We wondered why she buried the lead. What about your heart, your jaundice, the “possible sepsis” written on your chart? She assured us you were  healthy and would recover from the complications.

A sigh of relief. Confirmation that we weren’t losing you.

And the years began.

13 years of  you.

0 to 13 in a heartbeat.

13 years of motherhood.

29 to 42 in the blink of an eye.

13 years of closeness. You are as affectionate today and as you were the first time you wrapped your hand around our fingers. Your body covered in tape and sensors, the numbers on the oxygen monitor rising and dipping just enough to make our hearts hope and hurt at the same time.


13 years of uncertainty. Because the first lesson you taught me is that there are no clear answers. No one is going to tell me what to do. I have to think and rethink. Try and try again. Refuse and accept. Over and over and over again.

13 years of joy. Because no one else experiences happiness the way you do. It is loud and extreme and involves your whole body and soul. It is what I strive for.


13 years of worry. Because unfortunately, not all parts of our world are set up to embrace you. It is up to you and I to carve our way.

13 years of funny. You make me laugh every day. You are the medicine the world craves.

13 years of learning. Healthcare, education, sensory processing, all about you, all about ourselves. You have taught us so much and have ensured we will be life long learners.


13 years of , “Where’s Josh?” Since you started walking at 19 months, we haven’t stopped asking that question. It is a constant at our house and at every event we attend. I think, in the end, being one of the people who knows where you are will have been one of the greatest honors of my life.

13 years of begging you to eat. Your tiny frame worries me at the same time your legs grow too long for your pants again and again. Feeding you has been one of the greatest struggles of my life and yet you can almost look me in the eye today as you refuse the food I beg you to eat.


13 years of the Down syndrome community. One of the most precious gifts you’ve given us. Beautiful families, raw and real and ready to share all the pain and joy with anyone who asks. I have seen the best of humanity here. They brought me back to life in that first year and do so again and again with each new, seemingly impossible hurdle. Because of you, I will never be alone in parenting.

13 years of movies. Repeated scenes. Over recited lines. Amazement at your ability to remember every frame. An obscene amount of scratched dvds. I love watching you love them.


13 years of family. You are a big brother in the most typical ways. You are completely devoted and completely annoyed. You are a supporter and an agitator. You bring value to our family in a way no one else could.


13 years of adventure. You impress me every year. Your balance as you trek through creeks. Your stamina as you hike distances I never thought you could. Your fearlessness as you tackle wave after wave in the ocean. Your quiet presence as you sit and watch water flow around you. One of my greatest fears when you were born was that you would miss out on these things. Instead you show me how to truly experience them.


13 years of acceptance. Not us of you, but you of us. You are the most forgiving person in my life. You are unconditional love.

13 years of late nights. Because you never did want to sleep. Because midnight is no stranger to you. Even now, most nights I end up in your bed before I can get to mine.  Feet to feet, (because head to head is too distracting, even at midnight), my proximity allows you to slow down long enough to drift off to sleep.  I listen to your breath go in and out and savor the stillness. I think about the oxygen monitor in the NICU. I see how far we’ve come.



13 years.

It feels like a moment and a lifetime all at once.

It feels like an ending and a beginning.

Mostly, it feels like love.


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