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

Introduction to Cri du Chat Syndrome

A month ago, I shared the Cri du chat awareness video with Emily’s resource teacher.

Emily appears in this video 4 times which, to her, is the equivalent of being a movie star!

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Since she was little, I have allowed Emily to make her own decisions.  I have allowed her to fall, to get hurt sometimes, to taste vinegar and lemon juice…..  but most importantly, I have allowed her to learn how to make a decision!

Within a couple of days of us having the awareness video, she told me she wanted to present it to her class….

Wow!!!

I didn’t see that one coming.

Emily knows she has a rare syndrome, she knows she is different and she knows that different is awesome because normal is boring!!!  🙂

Sometimes, she is sad about being different… she wants friends and a boyfriend but quickly she’s back being her happy self…

Emily, to my knowledge, has never talked about her syndrome at school.

Where we live, kids with special needs are included in regular class.  This means Emily is in a regular 8th grade class…  the kids obviously know she is different but I have no idea if they know how much she’s achieved in her life.

Around the same time as Emily decided she wanted to share the video with her class, she was assigned an ELA (English Language Art) project and decided to make it about her syndrome.  She  decided to make a brochure about the 2013 conference in New York City.  We printed all the materials that was available to us and sent it to school with her.  She worked with her EA (Educational Assistant) on building a brochure.

Yesterday, there was a note in Emily’s communication book, her presentation date is June 12th 8:30am and she will introduce the awareness video before talking about her diagnosis and her upcoming trip to NYC, including the conference!

I am so nervous right now!

I will be there, I will try to the best of my abilities to make a video of Emily standing in front of her classmates and talk about herself, her syndrome, her reality!!!

I will be there for her if she gets questions that she can’t handle…  I will be there for her regardless of how it goes…

Remember my public speaking post…..?  How scared I was…. this tops it!  This is beyond anything I ever though I would see one day!  Between now and June 12th at 8:30am… I have to reach into my drama class experience once again and act as if everything is fine…. as if I am not nervous about this new adventure…

I am not afraid that she will not do well, I am worried about her classmates reactions…

Please send positive energy our way so those 14 year old react like friends to Emily’s efforts and achievements…

Would let your child open up like that to their classmates?

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