A Letter to My Son With Down Syndrome on His Ninth Birthday


Dear Alex,

As we lay on a hammock a few days before your ninth birthday, you tell me a story of where you’d fly if you were a bird. I listen intently at each word you’ve learned to articulate because we both know that speech is a challenge for you, but you’ve grown with both your words and imagination. And I revel in both. 

I need to apologize to you because I will admit that upon discovering your diagnosis of Down syndrome nine years ago, I cried. I shed tears until my eyes became swollen with disappointment and despair. Why me? I am young and healthy with no genetic predispositions to chromosomal anomalies. 

Yet, you chose me to be your mother, and the moment I held you, I knew why. You were such a beautiful baby. The doctor explained to me that I will most likely not be able to nurse you because of your low muscle tone. But I nursed you with no difficulties. It was this moment that began our journey to share and celebrate each of your accomplishments.

You are not your disability. You never were. You are a young boy navigating the waters of this life the best you know how, and I am your mother who will always stand by you to encourage you, cheer you on and love every inch of you. 

I do recognize that I needed to feel those strong emotions upon discovering your diagnosis. It was all a part of the process. But in many ways, I didn’t realize many of my fears where instilled and manipulated by societal pressures of defining what is “normal,” which I’ll reserve for a different letter. 

I love you my son. And I thank you for everything you’ve taught me. If we were both birds, I have no doubt that we’d soar together among many sunrises and sunsets. Let’s fly.

Love,

Your Mom 

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

baby with down syndrome in a walker

The R-Word Is Offensive, Even When There Is No Ill Intent

We were connected through a mutual friend. Our conversation via Facebook messenger started off friendly enough. He shared a blog post he had written. I shared one about my son, Augie. “Augie has Down syndrome,” I explained. I wrote more, but that statement must have stood out. He responded with a short note that included an invite to [...]
Owen on the playground.

Why I Hope You'll Ask Questions About My Son With Down Syndrome

There have been many posts circulating on social media recently that ask people “not” to do things: Do not ask me this, do not say this, do not assume this, etc. concerning certain disabilities, diseases, and lifestyle choices. While I appreciate them and admire their courage for posting their feelings, I don’t feel they speak [...]
family with two boys with down syndrome

What My 11-Year-Old Self Didn't Know When I Saw a Boy With Down Syndrome on Vacation

I was 11 years old, and our family went on our first really big vacation. We stayed in hotels and flew on an airplane and everything. Ironically, what I remember most about the trip was a young man I met briefly by the pool. I had wandered down to the pool to check it out for a [...]

I’m Thankful My Son With Down Syndrome Was Born in 2016, but One Thing Needs to Change

If you’ve read any of my other posts on Down syndrome, you know I have accepted and embraced my son Augie’s diagnosis and did so very early on in my pregnancy. It’s just part of who he is.  One thing I didn’t know or expect when the geneticist first shared he had Down syndrome was [...]