parenting | Lessons from my daughter

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.

October 4th 9:30am

A month and a day after the first day of high school…

We finally had our first school meeting to review Emily’s specialized education plan.

Jon came with me as I wanted him there in case it didn’t go the way I hoped. He is my rock.

So, yesterday morning we sat down and discuss:
1. Accommodation
2. Modification
3. Individualization

Yesterday I learned that there is a lunch club or best buddy program at the high school. On Tuesdays and/or Wednesdays, Emily is having lunch with grade 11 & 12 mentors and she’s talking with them. She apparently has quite an audience!

And a month later, I learn about it.

This was a 30 second item of discussion. I should have known about this already. Shouldn’t I?

We talked about some other things that are already happening and some that will be put in place.

Emily will help with the soup program and help with cleaning and straightening the cafeteria. She won’t mop the floor but will wipe the tables. I’m ok with that, I want her to learn some responsibilities.

She will take part of a social skills club which is a great opportunity for her and there was some talk about personal safety.

I mentioned that I was elected as part of the PSSC and that my main contribution would be on the exceptional students front. I briefly told her about the disappointments and struggle of Emily’s first day and she provided the explanation which I had figured out on my own.

She wasn’t at this school last year, wasn’t part of the transition plan meetings and so on.

Excuses…
Maybe I’m too harsh but…

In my work, I need to provide continuity if I am not there. When I transfer in or out, I care enough about the job I’m leaving to take upon myself to help my successor succeed.

I might be the exception but I believe that it is a reflection of who I am as a person and an employee.

I prepare for the person replacing me and a prepare for my new role.

I have moved within my company 3 times and could be moving again.

I expect the same of other people around me. I work with my team on building training manual and reference tools. I believe strongly in cross-training and documenting. I believe on making transitions as seamless as possible.

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You got a new position? Congratulations.
How will you be sure you are ready on your first day?
If your work is impacting others, how will you provide continuity through a seamless transition?

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My picture has nothing to do with my post except that the leaves are falling, it’s my favorite season of the year and regardless of everything that is or isn’t going on, I am happy because I decide to be. Look at Jake wanting to play soccer! That’s enough to make you smile too right?