How Our Whole Family Benefited From an Extra Chromosome

Dear Down syndrome,

By now we’re becoming well-acquainted with one another. I suppose you could even say we’ve developed a bit of a history together, complete with misunderstandings, anger, frustration, sheer joy and love too big to grasp. Until you came into my life, I was a naive 23-year-old newlywed who thought she had it all figured out.

It has been quite an adventure so far, wouldn’t you agree?

Before you came around, I was a fiery and wild-spirited young woman, jumping from job to job and indulging too much on weekend festivities. Even though I thoroughly enjoyed my fun lifestyle, I wanted to be married and have a family early because I already “knew” how life worked – -get a job, fall in love, get married, have babies, live.

While that plan seemed to be falling into place, I was only seeing the big picture with blinders on. I was totally oblivious to everything that actually existed outside of my plan. Like Down syndrome.

I became pregnant just three months after I got married. I felt great, and as far as I knew, I was rocking my pregnancy. My husband and I elected to skip any prenatal testing and to even forego the standard 20-week ultrasound. I remember the conversation in our living room the day before we could have had testing done. “If anything happens, it’s meant to be, and we won’t change a thing. Let’s not stress ourselves out. We have no idea.” My husband’s words stick to me like glue even today because he was right. We had no idea. We hadn’t even the slightest clue that when our daughter would arrive, she would greet us with a shocking surprise. What we needed was a hefty dose of reality, and you were the one to deliver it.

But you, Down syndrome, you already know all of this. Because you were there all along waiting to reveal yourself.

Our daughter’s birthday shared the spotlight with the possibility of you. In that moment, I was forced to face the unknown. As terrified as I was, I learned quickly that loving my daughter fiercely included embracing the parts I was not prepared for.

And to you, I have this to say. Thank you.

Thank you for remaining steadfast during the heartache and for allowing me time to understand what Down syndrome means. Even though you crashed into our lives like a tidal wave, thank you for weathering the storm right along side us. Thank you for helping me find contentment in your presence. Thank you for opening my eyes to a brighter world and for exposing me to hidden treasures I know I would have missed otherwise — for showing me beauty exists in many forms. Because of this diagnosis, I’m equipped to face challenges with strength I didn’t have before. Thank you for reminding me to slow down and drink up even the tiniest of moments and milestones.

There are days when I wish you had no part of her life or mine. Periods of grief move in and out in gentle phases, and the tears fall. I think I expect it will be this way for a long time. I could be angry about this road, the one I wouldn’t have voluntarily reached for, but without you, I wouldn’t know the things I know now. I wouldn’t have seen the things I’ve seen. I wouldn’t love the way I love. I’m thankful for the challenges and the triumphs shaping my entire family, and I’m still learning along the way. You teach me something new every single day. Most important, you make my daughter who she is. And that’s always something to be proud of.

You’re exactly what I needed when I didn’t know I needed it. You chose my daughter knowing we would all benefit from an extra chromosome. Life has a funny way of taking us by surprise.

Love,

Me

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.