Home » awareness » What I wish I could tell my 24 year old self the night we received Emily’s diagnosis

What I wish I could tell my 24 year old self the night we received Emily’s diagnosis


I have been thinking about this post for a long time.

The evening of October 6th 1999, after we received Emily’s diagnosis of Cri du Chat Syndrome, I was destroyed.  I hung-up the phone and curled-up on my bedroom floor crying.

Jonathan was in shock, sitting in the living room chair where he took the same call.

Sometimes, I think about those new babies being diagnosed, I imagine their parents in similar state of mind as Jon and I were.

I wish I could tell them that it’s ok to cry.

Just cry, get it all out.

Hug your baby.  He or she didn’t die with the diagnosis but who you thought your baby would be did.  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 2 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 includes 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.  Find time for each other too.

Remember to be a couple.

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 will 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 tummy hurt.  Be silly, every chances you have otherwise the seriousness of the situation will suck you in and that’s no fun at all.

LOVE yourself, your spouse and your baby.


Did I miss anything?


NEW!!!  We have a Facebook page: If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page.

You can also find me on Twitter at @plebrass

I am on Pinterest too: Lessons from my Daughter

I just discovered StumbleUpon but I have no clue what to do there: I believe you can find me under plebrass but I need to spend quality time there.

Find more about about Cri du Chat syndrome at 5p- Society

Emily has a her own page in the family stories , you can find it here: Emily

19 thoughts on “What I wish I could tell my 24 year old self the night we received Emily’s diagnosis

  1. Pingback: Please help! | Lessons from my daughter

  2. This is my 2nd try at commenting as I don’t believe it went through.

    It seems that Emily chose you and John as her parents and that though you may not have chosen the role for yourself ; you have definitely been chosen to guide other new parents through this beautiful journey .

  3. You touched me once again. Tears and goose bumps… I had to read your blog out loud to my husband that’s how much it touched me. I might not be dealing with a child with special needs but I can empathize (or try to). Every parent should remember your steps. Children are miracles and they make us better persons if we let them. xoxo

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