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

It’s genetic…

Back when Emily was diagnosed with the Cri Du Chat syndrome, we were told that we needed to be tested as well to determine if we were carriers.

The thing with genetic anomalies is that you can be a carrier and not have any clues that you are!  If whatever piece you are missing is attached to another chromosome, you will be just fine!  You will go your whole life not knowing.

So, once Emily was diagnosed with CDC syndrome, we were explained that she was missing part of the short arm (p) of her 5th chromosome.  Another name for her syndrome is 5p-

With such diagnosis comes more genetic testing but this time for the parents.

Being tested is simple enough, it’s just a little needle for some blood work than it’s waiting time….  that’s the difficult part.

That’s the part when you try to convince yourself that will not blame either you or your spouse for your child’s condition.  To be honest, I was extremely scared of being a carrier and even more scared that my husband was because I wasn’t sure I was a big enough person to not assign blame.  I wasn’t sure my young marriage would survive one of us being a carrier… I was worried about my future, my family, my life…..  That’s a lot of worrying for a 24 year old mom…

We are not carriers…. it was a relief to know this but it was also a really confusing moment for me as I had to learn to live with the fact that somehow, while creating a new life I had lost a tiny piece of chromosome and that tiny piece meant that Emily would forever be struggling …  How did I manage that???

No one knows!

When the genetic counselor told us we were not carrier, they also added that if we decided to have another child, we should contact them and that my pregnancy would be followed closely…  I couldn’t quite understand why they wanted to do that as we were young, healthy and not carriers.  Our odds at the time were estimated at 1:50,000 to have a child with CDC… What were the odds to have a second one with CDC?

But never mind the odds…..  if my baby was tested and had CDC…. what then?

…….

What was the point of this testing?  We would have to decide if we were keeping our baby???  Really???

…….

What an interesting idea…

Were we supposed to test our baby than decide to not continue with the pregnancy should the baby has CDC?

Were we supposed to test our baby than decide to continue the pregnancy…

Did we want to make the decision?

Was there even a decision to be made?

…….

I adore my baby girl with or without her syndrome…  I would not trade her for all the money in the world…  I will give her the best life she could ever have…

How would I live with myself if I decided to terminate a pregnancy because my future baby would be like my first one???  My first one is the love of my life why would the second one be any different?

Why would I be tested if regardless of the test results I would keep my baby?

What was the point?

…….

In the end, we didn’t add to our family… but in the meantime, when considering having another baby we decided that we would not contact the genetic counselor, we would not get tested and whatever happened would be ok with us!

…….

From the outside, it is easy to judge, it is easy to tell someone that to risk having another heavily disabled kid is not a good idea…

From the outside, it looks easy to say that a pregnancy should be stopped…

From the outside, whoever is looking our way knows nothing.  Absolutely NOTHING!!!!

Unless you’ve walked in my shoes, bug off!  Keep your opinions to yourself!

I will never even consider terminating a pregnancy because my next baby could be as extra-ordinary as the first one!

I have to live with myself, how could I justify doing something like this?

……..

Next time you find yourself on the outside looking in, whatever it is you are looking at…… remember that you probably don’t know half of the story so don’t be so quick to judge.  How would you like to be the one being judged?

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