Expecting My Second Child With Down Syndrome
I hate the phrase: “special kids are only given to special parents.”
I know it is said by some of the sweetest, most well-meaning people with hearts of gold. They probably could never imagine the way it makes me cringe; the tiny letdown I feel every time I hear it.
You see, I’m not special. When I hear this, what is says to me is I’m different than you. That my family is separate, somehow better prepared or in possession of a secret code to take this journey. And that is totally not true.
When I heard the words Down syndrome (not once, but twice), I felt the same feelings you probably would feel if it was said to you. I was scared, shocked, momentarily lost. I questioned myself, what I had done to get here, whether anything would ever feel “normal” again. I was not handed a manual. I grasped at tiny pieces of information at a time, scared to death of overwhelming my fragile heart.
I was not special, I was afraid.
I think while people mean this as a compliment, a tiny subconscious part of them might be saying, “I know I couldn’t do it.” Maybe you don’t think you have the patience, the grit, the strength.
But I’m here to tell you a secret I’ve learned — yes you could, and you would. You would fight for your child in situations that, a few years before, you didn’t even know existed. In IEP meetings, in phone calls to the insurance company, in emails to dance companies that don’t think your child “would be a good fit.”
And there are parents out there who have amazing, deserving kids with a rainbow of different needs who don’t try. That end up in the email at work at my news station. Those who don’t find the “good” in the sometimes challenging. Parents who give up or have their children taken away because they don’t or can’t care for them like they deserve. Still think they’re special?
We are no different than you. When I envisioned my family years before they were a reality, I didn’t picture the number of chromosomes they would have. When we got pregnant with our third, I certainly didn’t think I would hear the words “we are dealing with Trisomy 21” again after taking that blood test.
But you know what I did? I cried. I felt that ache in my stomach. I worried. Then I realized having a baby is not about making your life perfect, it’s about giving them life, the best one you can manage. And that doesn’t make me special. That makes me a parent. That makes me a person who is dropped off in the middle of this island we call life and told to survive. I am the person who chooses to see miracles when others see hurdles.
Of course I try my hardest… most days. I’m not an asshole. I’m exhausted sometimes, and totally fulfilled others. Scared of tomorrow on occasion, and completely happy with today most of the time.
What should you say? “You’ve got this,” “I’ll be there every step of the way,” “This baby will be so loved,” “I am so excited to meet him/her!” There are so many options. And it’s OK to feel a little awkward. It’s normal. But an offer of support is always better than a cliche.
So I’m not special. I’m just like you, on the same lake, in a different boat. Just don’t say “special kids are only given to special parents.”
Follow this journey at Letters to Lila.
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