therapies | Lessons from my daughter

Today is our 16th wedding anniversary and Emily’s christening anniversary.

So, a month or so ago, I signed Emily and I for the CIBC Run for the cure as part of my work team.

I figured this would be something fun to do as a family. I helped Emily raised the amount she pledged and I did my own fundraising.

On Friday, we had a bake sale at work. I’m not a baker but tried my best.

As of this morning, we were just over the $4,000 mark. This is so awesome. I can’t wait to see what our final tally will be.

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Tomorrow, oct 6th, will be the 15th anniversary of Emily’s diagnosis.

15 years ago, we were told Emily would never walk. Every single doctor and therapist we’ve met that first couple of years after her diagnosis continued to tell us she would never walk!

Emily was almost 3 when her physio therapist started to believe she might walk. She had a walker for a year before she started walking on her own.

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Fast forward to today.

We could do a 1km or a 5km. Emily, Jon and I decided to do the 5km.

Just before the run started Emily had the best surprise ever. Wild Willie, our junior hockey team’s mascot showed-up.

Emily knows someone’s in the costume and she knew that this year was supposed to be a new person in the costume. She knew he wouldn’t recognized her like the previous Willie did. We’ve “known” him for 8 years or so, he comes to see her at the game and even showed up at her birthday party one year.

But something special happened today.

Emily’s favorite cat was the same as last year! And that means a lot of hugs and smiles and hand holdings.

They were both so happy to see each other that the big cat decided to join on our walk.

Yes, my girl has that kind of effect on people who have known her over the years.

She makes people around her, cheer for her and get inspired by her.

Around 1.5km in our walk, the beautiful fall day turned into pouring rain.

So much rain!

☔️☔️☔️

We made it to around 3km when Emily said her feet were wet and although I am sure our feline friend would have continued, I am guessing his fur was getting really heavy and he had to be thirsty.

We took a short cut to the finish line.

3km in the rain on uneven ground through the park for the girl who wasn’t supposed to walk is a really big achievement.

So to celebrate in style, I got her a medal.

Once home, we changed into dry clothes and ate Subway sandwiches.

Happy Anniversary to us!

I found the medal on the races for awareness website (they are on Facebook). Joanna helped me get the medal here within 2 days of contacting her as I wanted it here in time for today. The medal is awesome, if you ever need one, check them out.

Yesterday was our 15th Wedding anniversary!

Today is the 14th anniversary of Emily’s diagnosis.

Even if I wanted to forget today’s date I can’t!

14 years ago, when we celebrated our first wedding anniversary, we were still waiting for Emily’s blood work. We had received all the other test results.

We knew something was not quite right with the white matter in her brain. We needed a MRI to confirm exactly what was going on.

As per Wikipedia,

White matter is one of the two components of the central nervous system and consists mostly of glial cells and myelinated axonsthat transmit signals from one region of the cerebrum to another and between the cerebrum and lower brain centers.

White matter, long thought to be passive tissue, actively affects how the brain learns and functions. Whilst grey matter is primarily associated with processing and cognition, white matter modulates the distribution of action potentials, acting as a relay and coordinating communication between different brain regions.^[1]

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We had appointments the following week with Physio and Occupational therapist to start a therapy plan.

We needed to see an orthopedic surgeon and many more doctors…

We celebrated our first anniversary knowing that it could all fall apart. Wondering what was wrong with Emily’s brain. Worrying about our future.

14 years ago on this day, Jon and I went to work while mom kept Emily home. She was visiting us for the week to allow us to go out for dinner on our anniversary.

I LOVE MY MOM!

Mom called me at some point during the day to tell me that Emily’s neurologist had called home looking for us and would call back around 6pm.

Jon and I knew it had to be the DNA testing… we figured that they had found something…

That afternoon didn’t go by fast enough, I couldn’t concentrate, I wanted to go home.

Once home, we waited for the phone to ring…

It rang.

I talk about the call in this post: the phone calls that changes my perspectives on life

October 6, 1999 – Call #3

We got the call after work, the genetic testing results were in. Emily has the Cri Du Chat Syndrome, she is missing part of her 5th chromosome… Jon and I are on the phone, listening to the doctor but I can’t hear anything, I am getting words here and there but my brain is numb, my stomach hurt, it feels like I have been stabbed (not that I know what being stab feels like but it can’t hurt more than what I was feeling at the time!) I asked only one question, “Does it means that she is handicapped?” The answer : “Yes, permanently and severely”

I was destroyed, lying on my bedroom floor crying… my mom was visiting that week, she brought Emily to me and told me that regardless of what that phone call was about, that Emily was still my baby girl, she was the same little girl from before the call and that now we would know how to help her! I LOVE MY MOM!!!

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Today’s anniversary is about the worst and best day of my life. It’s all jumbled together.

The Worst: The hurt and pain of knowing that my baby would never have a “normal” life. She will forever struggle! She will forever be different. I had to mourn the baby I thought I had, I had to give up on dreams and hopes.

You can read more about these feelings in one of my most “liked” post: Afternoon Tea in Bermudas

The Best: The relief of having a diagnosis. The weight that is suddenly lifted from your stomach. You can breathe again for the first time in months. There is nothing that can compare to the unknown. Not knowing is harder than knowing. Knowing allows you to look forward and start planning for therapy. Knowing allows you to get to know your baby all over again!

Here she is, our Emily, a couple of days before her diagnosis.