The 3 calls that changed how I see life!

Reposting – Originally written in May 2013!

This post is one of my longer post but I feel it explains so much about who I am!

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Some of you know this, others don’t!  It took almost a full year for our family doctor and pediatrician to agree that something was different about our daughter.  A year of being told that we were over reacting young (23 and 25) parents…..  A year of us trying to feed our daughter, a year of no sleep….

Just before her first birthday, our doctors agreed that something was wrong.  The first comment to it was “your daughter will never walk she needs to see a neurologist”  And with that, we were sent home to wait for an appointment….

I didn’t sleep well that night …

I cried a lot….

Our first meeting with the neurologist came not too long after… many thanks to whomever canceled their appointment that week as the waitlist to see a neurologist was over 12 months long…

Welcome to Canada, our health care system is free but sometimes you need to wait a little…!

Our neurologist was amazing, many tests needed to be performed to understand what was going on with Emily so we scheduled the tests and she told us to reach out to our families to see if there could be a history of genetic disorders…

My husband is adopted so his reaching out involved a whole other world which is his and not mine to talk about.

My family is really close regardless of how far we are situated geographically.  I called my mom who got me the number for a cousin which I knew had a heavily handicapped baby boy who did not survived for very long.

This was call #1.

To this day, I think of that call as the moment where a realized that it didn’t matter what happened. I was going to be a great mom, I was going to love my daughter and do whatever it took to be sure that she had the best life ever.  I was going to help her reach her full potential, I was inspired.  How can someone who lost her precious baby boy could inspire me so much is still a mystery.  She was at peace, they did everything they could and were ready to do more should their boy had been able to stay with them longer.  After the call, I wanted to be just like my cousin, positive and at peace with life!

On my father’s side, I have a cousin with an severely autistic daughter, she was diagnosed before autism was known!  I had spent time with them and their daughter on multiple occasion, she was lovely but busy!  My cousin always seemed to be an amazing dad to her and her little brother.  My cousin’s wife seemed overwhelmed and a little disconnected. She wanted to talk to me and I was avoiding the conversation.

The phone rang one evening, this was call #2.

I didn’t want to take the call but I was raised properly and I wasn’t going to hang-up on her so I listened to her story and when I have a bad day, I go back to that call.  The gift I received that day is not something someone can buy.  That evening, when I could finally hang-up the phone I looked at my husband and told him that I had just received a picture of what I didn’t want to become…  Overwhelmed, stressed, negative, upset, feeling like myself and my child were failures…. FAILURE!!!!  Never, would I allow that to be me…. Never would I look at my baby girl thinking that she failed me, that the fact that all my dreams for her were not coming true would be reflected on her…  I would go back to call #1 and adjust my dreams, I would celebrate all the small milestones, I would laugh and love…..

September 1999

We lived away from the hospital and when we went to get the tests results, the DNA (blood work) wasn’t ready.  We got a lot of other results that day….  We needed to schedule a MRI to complement the scan and we had to get started on PT and OT to stimulate our daughter.  ENT, cardiologist, urologist and many more specialist wanted to see her…  slightly overwhelming but at least we were in good hands.

October 6, 1999 – Call #3

We got the call after work, the genetic testing results were in.  Emily has 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 hurts, 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!!!

That day I cuddled with my little girl and promised her and myself that I would be like that first cousin!  That day, I went from being a 24 year old to being much older than my age…..

That day I decided that anyone wanting to drag me the wrong way or anyone wanting to suck the life out of me by being negative, high maintenance or what not would be cut-off!

To this day, I have lived up to it, I have cut people off, I have told others that if they didn’t adjust their vocabulary or jokes repertoire that they would not be allowed in my life….  I have surrounded myself with love and understanding!

I have adjusted my life to my daughter’s challenges……. Thanks to 2 really different phone calls.

Gifts come in all kind of packages, can you recognize them all?

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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

If you want short updates and timely pictures of the little things that are happening in our life, please like and follow Lessons from my daughter‘s page on Facebook.

You can also find me on Twitter at @plebrass

I am on Pinterest too… one day I will figure out what to do there other than finding cool recipes but meanwhile, you can find me here: Lessons from my Daughter

14th Anniversary

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.

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