My child’s Down Syndrome diagnosis changed who I am for the better

I walked out of my doctor’s office and the New Mexican sun was blinding. Its rays shined too brightly on my reality, or at least what I thought was my new reality.

My doctor had just told me my unborn son had Down syndrome. “At worst he’ll never feed himself and at best he’ll mop the floors of a fast-food restaurant one day,” the doctor brutally said to me while I clutched my pregnant belly with one hand and wiped a tear away with the other.

At night I was exhausted from pregnancy and could normally fall asleep with ease. But then morning would come and I was faced with reality all over again—that’s when the tears would start. Getting out of bed was the hardest task I did each day. One morning my mom had to pull the covers off of me, she turned on the shower and then brushed my hair because I couldn’t do it.

Related: What a high anxiety pregnancy taught me about supporting my son

The first 27 years of my life went just as I planned. I worked in the field I had dreamed of as a TV News Anchor, I married the love of my life, I had a daughter, I was having a son.

But the doctor made me believe this new child would have a life not worth living, so I grieved like a death had taken place. I grieved for him but I mostly grieved for myself. After my child’s Down syndrome diagnosis, I thought my life had shattered; I was left walking barefoot in the shards of the unexpected.

Changing my own biases

The grief had passed, and I was starting to see how the doctor boxed in my son’s life based on his own outdated notions and biases, but I believed him because I unknowingly had my own. I was consumed by all I thought my child wouldn’t be able to do instead of thinking about all he could do. Even after the grief fog had lifted, I realized I still had a lot of work to do in how I viewed disability and my son’s life. I needed a better telescope.

Through research and new relationships, I realized disability isn’t always something someone has, but instead is a large part of who someone is. I didn’t want my son to be defined by Down syndrome, and slowly I realized that it was my own bias, my unknown ableism, working against him. I learned about school inclusion, how special education is not a location where children are sent, but a service meant to come to the child. I started getting involved in the Down Syndrome Diagnosis Network—an organization aimed at changing diagnosis experiences like the one I had. As the love for my son grew deeper, so did I.

However, it would take me a bit longer to realize I not only needed to broaden my horizons in how I viewed disability and how I viewed my son but myself. My life. It would take me a while to realize I had boxed myself in.

The view I once had of my life was not the only life that was possible. I thought the way to happiness meant: a TV career, a husband and 3.5 typically developing children. I had such a narrow view of success and the potential life had for me. It took being hit by the unexpected to open up my worldview.

Related: Caterina Scorsone on Down syndrome and why it’s all about difference, not disability

My child’s down syndrome diagnosis was an unexpected gift

I once thought life was about checking as many boxes as possible and grabbing as much happiness along the way. I have since come to learn a good life is one full of love and purpose and my child with Down syndrome has given me both. I see how he has had a trickle-down effect on our family. His sister is more empathetic than others her age, his pre-teen cousins are concerned with social justice in ways most haven’t yet awoken to. I thought Down syndrome was darkness, instead, it is light. Through it, I and those who know my son can see the world more clearly.

What I initially thought was the worst thing ever ended up being an unexpected life lesson. What I once thought was a tragedy, ended up being a blessing. Without Down syndrome, he wouldn’t be who he is. Without my child with Down syndrome, I wouldn’t be who I am— changed.

My unexpected motherhood opened me up to possibilities I never thought possible.

It took the unexpected to ignite a new passion, a new fire, inside of me. I thought the pain, the unexpected element introduced in my life, meant my life was ending. I thought my life had shattered, but instead, the baby inside of me was slowly pulling everything into place. He gave me a new and better beginning.

A version of this story was originally published on November 21, 2019. It has been updated.