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.
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…
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!!!
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.
I just love reading your blogs.
Thank you 💜
Reblogged this on Lessons from my daughter and commented:
As relevant on her 18th diagnosis anniversary as it was on her 14tg!
Yep, the not knowing is the worst.
I know right? I was so worried than afraid… The doctors kept saying it was neurological and I kept wondering what could be wrong with her brain than is was worrying that it could be something that could make her dick or kill her….
Not knowing is the worst.
I agree with you. At least once you get a diagnosis you can start a plan of attack. It still sucks, still scary. But now you have the power, not the fear.
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You are all very lucky to have each other. Someone knew what they were doing when they gave Emily to 2 special people 🙂
Thank you Lorna! It took time to see the beauty of if all but I wouldnt trade her or him for anything. I do feel lucky to have them and I know they feel the same. Thanks for reading!
she is one amazing soul and you are all so lucky to have each other. she will do great things, and find her own way to do them. )
Thank you. She is a teacher, she is teaching us about ourselves as much as teaching us about life. We are lucky to have her.
yes you are. have you ever read the book ‘raising adam’? it’s an amazing true story of a mother who had to come to terms with her son’s differences and the incredible love they have for each other.
Beautiful baby girl! Regardless of her diagnosis, I’m sure she has been a wonderful gift to you:)
She is the best daughter I could have had. She is amazing and is bringing the best out of me, she’s a teacher beyond her years.