doctors | Lessons from my daughter

October 1999

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

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 What we managed to find was depressing and seemed outdated.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Jonathan and I tackled this journey with outdated information and without a support system.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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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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Good morning Blogosphere!

The cars have 1/2 inch of ice on them and the driveway looks like a dangerously uneven ice rink. The road we live on is covered with black ice.

I made the executive decision that we are not going anywhere today.

So here I am!

Sitting on the couch with my coffee and laptop. Instead of going out to cheer practice, I will tell you more about my girl.

Do you remember how Emily told us she (we) had to make a salad dressing for her school culinary tech class earlier this week? If not, please check it out: Cooking with daddy!

The jar of salad dressing came back home without being open and Emily telling us that we needed to make a new one without “fish”…

When I picked Em from school on Thursday, her culinary tech teacher confirmed that we didn’t need to make anything. This is a class project.

What will be a school AND home project is the cooking competition Emily signed-up for.

A cooking competition!!!

I am not sure when it is yet and the rules are not quite defined still but from what I know so far, Emily will need to pick a recipe she for a main course. She will have 45 minutes.

I don’t know if she needs to make everything from scratch.

I don’t know if she can go see the space and tools beforehand.

All I know is that once we all agree on the recipe, she will practice at school during culinary tech and she will practice here too.

I also know that she will be allowed to have the recipe with her and will be competing against her peers who are also on IEP (Individualized Education Plan).

With that being said, I guess we need to get Emily involved in food prep at home!

Yesterday was Good Friday which meant no school for Em and no work for me so we made pancakes from scratch.

We started by making coffee…. actually Emily made us coffee.

I showed Emily the recipe, she gathered all the ingredients and most of the tools.

She doesn’t like the mixer. I don’t know if it’s the noise, the vibration or the safety lesson I gave her awhile back on how to use it but she’s not using it.

I guess we need to find a recipe without a mixer for the competition

She also doesn’t use the toaster on her own, she uses the microwave 10 seconds at the time and only use the stove to stir something we are preparing.

She’s never moved something hot off the stove or out of the oven.

I’m thinking we might want to find a really awesome salad as a main course for her competition!

Back to our pancakes, look at my girl.

Egg cracking… always FUN!

Emily’s technique is called “Egg crashing”. At least now we’ve determine that she should do it on the side and not directly in the ingredients she’s measuring.