What I Wish I Heard When My Daughter Was Diagnosed With Cri du Chat Syndrome

The evening of October 6, 1999, after we received Emily’s diagnosis of cri du chat syndrome, I hung up the phone and curled up on my bedroom floor crying. Sometimes, I think about those new babies being diagnosed. I try to imagine their parents. I wonder how they are doing. I wish I could tell them — and my then-24-year-old self hearing the news — so many things. Here’s what I’d say.

Just cry, get it all out. It’s OK to cry.

Hug your baby. You didn’t lose him or her with the diagnosis.

Give yourself time. Remember to be gentle with yourself, your spouse and your baby.  This is happening to all of you.

You are stronger than you ever imagined.

Don’t read so much about the diagnosis. Get to know your baby first. You will have a lot of time to learn about the diagnosis. You will be submerged in information, you will meet many doctors, learn lots of new words and attend a lot of therapy sessions.

Take notes. If you or your spouse can’t attend an important appointment, bring a friend.  It’s amazing how even when two people attend the same appointment, they don’t remember the same things.  Years later, do this for school meetings, too!

Feel free to remove negativity from your life. Yes, this may include Facebook and other social media.

Your family is your priority. Your family includes yourself; take time for you and allow your spouse to do the same. Remember to be a couple. Find time for each other, too.

Trust your gut. You will be the expert on your child’s “everything.” Even when you will have no clue about what is happening, you will be the expert!  Trust your gut. You will become your child’s support team, nurses, doctors, therapists, advocates and so much more. But above all that, you are your baby’s parents, you are a couple, this is your family!

The diagnosis will change your life. It can be difficult, but it will be rewarding. There is no book written on this. You will write your own story as you go.

Celebrate every single little thing. Find what makes you, your spouse and baby happy and celebrate away.

Laugh until your tummies hurt. Be silly every chance you have, otherwise the seriousness of the situation can suck you in, and that’s no fun at all.

Love yourself, your spouse and your baby.

Did I miss anything?

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