How we reacted to Emily’s devastating diagnosis

Emily15mo

October 1999

Emily was just over 15 months old when we finally received her diagnosis.

Our daughter has  Cri du Chat syndrome

We learned about Emily’s diagnosis a week before meeting with the genetic team.

Back in 1999, our internet was painfully slow and  there wasn’t much information available.  What we managed to find was depressing and seemed outdated.

I remember sitting in comfy couches in the genetic counselor’s office.  Emily in her car seat on the floor, she was facing us as we were listening to what our life was going to be.

The genetic student sitting across from us looked our age or maybe even younger than us. She regurgitated information she was reading in the giant book of everything a doctor needs to know.

Over the years I’ve developed a strong “disliked” of that book.

Your daughter will never walk, talk, recognize you, understand you or show emotions.  She will be fed by tube as she will not be able to eat enough to grow properly. Your child will be in her own world.

I remember telling them that Emily knew us and recognized our voices.  When her dad or I entered a room and talked to her, she was looking for us. Her head, the only part of her body she could control, would move slightly as she looked for us. She didn’t do that for strangers.

The answer from the genetic counselor was harsh.

You want to believe she is recognizing you but in reality she isn’t… your daughter can’t do that.

It wasn’t my imagination!

She knew us and she loved us, in her own way!

Over the days, weeks, months and years following her diagnosis, I held on tight to the fact that Emily could recognized us!

If she could do that, what else would she be able to do?

💜💜💜💜💜💜💜💜💜💜💜💜💜💜💜

  • We didn’t plan to lose a small piece of the short arm (p) of our baby’s 5th chromosome.
  • We never thought that she would be 1 of 50,000 born with Cri du Chat syndrome.
  • We didn’t imagine that we would be the ones teaching the medical professionals around us about Cri du Chat Syndrome.

Jonathan and I tackled this journey with outdated information and without a support system.  We loved our daughter and we were going to give her the best life we could!  We took a day off from work every single time we needed to see a specialist and we saw many. We had 1 hour of Occupational Therapy and 1 hour of Physiotherapy per month.  We lived far away from our family and had no relief available.  We were Emily’s and each other’s only support system.

We were and still are Emily’s biggest fans!

This was the beginning of our Journey navigating through our new Cri du Chat syndrome reality…

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Lessons from my daughter is on :

Facebook: Lessons from my daughter

Twitter at @plebrass

Pinterest too: Lessons from my Daughter

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

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

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Busy weekend

When Emily was little I worried about her future.

Emily15mo

To put this in context, you need to remember that in October 1999…

Just days after the picture above was taken…  Genetic counselors a at the Montreal Children Hospital told us that due to Emily having Cri Du Chat syndrome, her future meant…

No walking!

No talking!

No understanding us!

No showing emotions!

No eating solid food!

At no point did they say this was a worst case scenario.

There was no doubt in their mind that this was going to be Emily’s life and we could see them feeling sorry for us.

We decided to give Emily the best life possible and that we would adjust to her needs and limitations.

This past weekend, was busy…

We had a roofing company over, putting a new roof on our house…

Meanwhile, Emily was starting her Cheer fall sessions.  It was time to talk goals and prepare a lesson plan She loved cheer this past summer so she’s ready for more.  Remember this picture?IMG_2820

An hour after cheer was done, Emily was at her baseball’s team end of summer game and party.  

  Emily and all her team mates got team jackets!  How cool is that?

  We had 39 players this year, divided into 2 groups.
We concluded Saturday with attending a hockey game.

Sunday morning, Emily was volunteering at her riding club. When coaches are tested to move up in their certifications, they need riders and Emily wants to help.

  

Emily helped coaches from other clubs on Sunday and they loved her 🙂

We had a busy weekend!

None of these would be possible if it wasn’t for amazing people getting together and wanting to provide opportunities for kids with special needs.

Thank you Cheer Olympia

http://www.olympiacheerleading.com/mobile/en/

Thank you Field of Dreams

http://monctonfishercats.com/fishercats2015/index.php/field-of-dreams

And thank you Cavalier riding club

http://cavalierridingclub.weebly.com

You are amazing and although I was grateful for this busy weekend to be over, I am even more grateful for the opportunities you are giving Emily and many others.

Thank you to your board of directors or owners and thank you to the volunteers who give their time, energy and positivity.

All of you, are part of our family now!

In the coming weeks, I will share more about Emily’s riding club as she starts her fall session this week and I will let you know more about Emily’s baseball team and our fully accessible baseball field project…