A Letter to Sam on World Down Syndrome Day 2018

Dear Sam,

Happy World Down Syndrome Day, buddy! I am thrilled to celebrate you and raise awareness for those with Down syndrome. I’m so thankful to walk through life with you and connect with so many other families who have loved ones who also have that extra chromosome.

I remember when your Dad and I decided to adopt. We took a few months to pray and then a few steps of faith down an unknown, beautiful road. We waded through mounds of paperwork, somehow proving to the state that we were qualified to add to our family. Long months of waiting eventually led to that life-changing phone call, when we learned of you.

I prayed and wept and fought for you. And when I finally met you, I never wanted to leave your side, keeping a watchful eye on the NICU staff as they wheeled you away for surgery. When they brought you back, you were full of tubes and IVs but even they could not keep me from you. I weaved my hands between the wires, carefully untangling your limbs so I could snuggle you. I cupped your tiny fingers in mine, covered your sweet face with kisses, and gave thanks for the gift of you.

Here we are, dear one, 3 ½ years later. You are no longer tethered to any beeping machines. You are less interested in sitting on my lap unless you’re really tired. You are running and dancing and grinning and teasing. You are building LEGOs, racing trains, learning signs, tickling siblings, and meeting milestones at your own pace.

You have moved from my arms to my lap to a spot in the preschool room. You are no longer constantly within my reach and I am painfully aware of what the passing seasons mean for you and me. I didn’t struggle to release your siblings like I struggle to S.L.O.W.L.Y. release you–to free you to learn and grow apart from me.

I confess my worry over letting you venture too far without me. I see our Creator’s fingerprints all over you but I also realize that many in our world do not. People can be ignorant and cruel and I cannot always protect you from the ugliness of humanity.

You are smart and capable, to be sure. You are learning social cues and interpreting facial expressions. You can do far more than the negativity ever said you would.

You are able to communicate your needs and wants but will others be willing and patient enough to listen?

You are funny and kind and helpful but will others see you and take advantage?

Your life has value and meaning but will others notice your differences and make assumptions about your inherent worth?

You have worked hard and struggled to reach your goals but will others use your delays as a reason to exclude and hurt you?  

You bring humor and joy and friendship to our lives but will doctors and geneticists and governments continue to justify the elimination of those like you?  

Sam, I don’t have the power to change minds or hearts but I can give you space to be you. I can utilize resources and programs that will encourage your growth and development. I can vote for people who view Down syndrome as a vital, beautiful part of our culture–not as an expense or liability. I can give you opportunities to be exactly who you are in this broken world and I can say to anyone willing to listen and learn, “Here’s an eraser. Let’s get to work on those margin lines.”

When will Down syndrome be considered a cultural norm with no need to commemorate on 3/21?

When will a diagnosis of Down syndrome bring smiles and celebration rather than averted glances and apologies?

When will people no longer stare at you for your differences?

When will your presence in our world be more ‘normal’ than your absence?

I cannot answer these questions but I can help to educate and inspire others, advocate for you, and shout your worth to a world that needs reminded often that ‘we are more alike than different’.

May you know how much I love you, Sam–and if I had to go back in time, I’d choose you all over again.

Love,

Mommy