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

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Afternoon tea in Bermudas

When I was pregnant, I was hoping for a healthy little baby girl!

I had those images in my head and in my heart.  My daughter and I walking, chatting, going to the book store and sitting around a coffee shop with our books and magazines.  My baby would turn into a beautiful young lady, polite and respectful, she would love me the way I love my mom.  We would go shopping and we would travel the world together….  She would probably dance, be really good at school and grow-up to be an amazing woman…

After Emily was diagnosed, I had to fill some paperwork detailing her handicap / her disability.  I looked at the form, all she could do was see and hear…  She was severely affected physically, mentally and her gross & fine motor skills were non-existent…  I knew I had to sign the form and send it to the government but I sat there and looked at it for days…. I didn’t want to admit it to myself.

Emily didn’t die when she was diagnosed but my dreams did!  All of them were shattered!

Regularly I had to go back to those calls that changed my life and remind myself that I could do this, that all I had to do was look at my daughter for who she was not for who she could have been.  I had to adjust my dreams.

November 2012, my husband, daughter and I traveled to Bermudas!  While at the Fairmont Hamilton, I noticed they were offering afternoon tea… Emily likes tea, her Nana introduced her to tea.

I asked Emily if she wanted to come to afternoon tea with me.  Explained that it would be like pretend tea but for real….. we would pick our tea and tiny sandwiches, we would wear our pretty dresses and try to drink tea with our pinky up…  She agreed to try.

I reserved a table, we got all dolled up, said goodbye to daddy and we went for tea!

Most people looking at us saw a mother-daughter (and a doll) having tea.  I saw a dream, a dream I wasn’t even allowing myself to have anymore.  Emily picked a jasmine butterfly tea and I can’t remember what I picked.  We took both trays of sandwiches and every other little finger food they would bring us.

We tried everything, some things she liked while others she didn’t.  She had an opinion, on the tea and the food.  She had an opinion on the live music.  We had small chit-chat and she tried drinking with her pinky up…  We laughed!

I discretely wiped tears from my eyes….. I didn’t want Emily to see how happy I was, I didn’t want to confuse her.

Sometimes, our dreams are so big, so far away that we can’t imagine getting there….  I had given up on this dream of enjoying a beverage with Emily while talking…… When it happened, I was speechless.  I wanted to hug her and tell everybody around us how special this moment was but I didn’t.  It was our moment.

I do have that daughter from my earlier dreams, she is polite, she adores me, she is beautiful inside and out.  She is determine to learn and work hard on learning to read and understand math.

But the most important thing is that she is herself and has opinions…..

Do you allow your kids to be themselves and build their own opinions?  Do you allow them to be kids and to dream?

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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… one day I will figure out what to do there other than finding cool recipes