therapies | 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 What we managed to find was depressing and seemed outdated.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?

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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Jonathan and I tackled this journey with outdated information and without a support system.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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Find more about about Cri du Chat syndrome at 5p- Society

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If you have been following Lessons from my Daughter for awhile, you know about the famous elbow to the head.

It happened on October 2nd 2013 and I wrote about here: It’s not nice to hit

Come on, go back and click the link, it will help you follow where I am going.

I rarely write about the downside of having a child who doesn’t quite control her movements.

That hit on October 2nd 2013 did something to me.

To start, it gave me a concussion. I tried to ignore it for a week before the headaches and discomfort made me consult.

It took me 2 weeks before I woke-up without a headache.

By Halloween (29 days later) I was still not well so I treated you to pictures of Emily dressing up. The art of dressing up! Not just for halloween…!

A couple of days later I went back to work but I was careful not to over do it.

Over the following 2 years, I have had what I call concussion headaches, hopping on a plane now means serious headaches on arrival. I asked the dentist if my teeth were turning bad as they were hurting so much but the dentist said they were fine. I consulted various specialists and therapists about my headaches, my concussion, my ears, my teeth and my jaw

I thought I was losing my mind.

September 2015, I was enlighten From concussion to TMJ and embarked on a new recovery path.

My dentist changed my little metal bar behind my teeth to a retainer around that same time.

Within days it was obvious that I clench and lock my jaw overnight which contributes to my headaches and jaw pain.

As of yesterday 29.5 months later, I now have a bite plate to wear at night to help reduce the stress on my jaw and eventually, hopefully reduce the headaches…

I haven’t been on a plane since May, we will see in June if this is still an issue.

I can’t imagine ever riding a roller coaster again as the movements are too much for my brain.

This is my reality.

The reality of many parents out there.

Our kids are not trying to hurt us, Emily never meant to hit me exactly where it would trigger all of this. None of this is her fault but this is my reality.

I rarely write about the downside of having a child who doesn’t quite control her movements because I don’t want to dwell on it.

I try not to think too much about how over the years, I had my hair and nail pulled, I got slapped, pushed, bitten, kicked or hit. How much sleep I didn’t get, how much vomit I cleaned or how many vacation days I spent in hospital or in therapies. I don’t want to know how much money and time we spent on tutoring, sign language classes, PECS system and other therapy equipment.

I don’t want to associate my back pain, my headaches and TMJ with my child so I don’t.

This is my reality and the reality of many other parents of exceptional children!

Recently, I have witnessed parents of children with special needs being verbally attack for taking care of themselves, for mani-pedi, for going to the gym or tanning salon.

To those parents, good for you, take care of yourself, we all need to take care and spoil ourselves for our own sanity and to continue fighting and advocating for our kid.

To those commenting, pointing fingers and verbally attacking these parents please know that when you do that, you attack all of us.

All Of Us!

We are a big family who can be kicked and pushed around but we won’t stop moving forward, we will not stop defending our kids, we will not stop advocating for them and we will not apologize for finding tiny pockets of time to take care of ourselves.

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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