May | 2013 | Lessons from my daughter

If you are highly religious, this might offend you but it’s not meant to. I don’t judge your beliefs, please don’t judge mine!

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I believe, in something or someone…..

I believe that when I need a kick in the ass , I can close my eyes and ask whomever is listening to help me.

I believe that Adrien, Fred, my grand parents and some other family members and friends are keeping watch for us.

I believe that when I get in a plane, I can ask every single Gods from every single religion and some that probably don’t even have a known religion to get me there and back safely!

I believe we are not alone!

I have values which I cherish. Do I need to go to church to show others that I do? No!

When Emily was born, I wanted her to be christened because that’s what we do in our family. Even before knowing that she would be facing an extremely challenging life, we had agreed that her christening would be the only religious ritual we would put her through until she could decide for herself…

When we met with the priest in the town where we lived at the time, Jon was really blunt and told the priest that we had never been in his church and would probably never return…. Not a good start to a conversation regarding our wedding and Emily’s christening…

Yes, we had Emily before being married! That’s how we do it in my world! In my world we don’t get married, we live together and raise a family without marrying. Marrying wasn’t important to me, it was important for Jon and his family so I went with it! Jon told me that a visit to the town hall would be sufficient so I told him that if I was going to get married, I was getting the white dress and it would be at the church!

I won!!!! 🙂 And my new husband looked really good in a tuxedo!

Surprisingly, our meeting with the priest that day went well. Jon did is little speech and than the priest asked us questions…

Did we take care of our daughter’s needs? Of course we did!

If a friend needed a roof for awhile, would we help? Of course we would, just ask Julie, Anick or Mike (and his boys)…. we’ve opened our house to friends on multiple occasions.

And so on! That priest was cool, he understood us and knew that we were good people, just not the kind that goes to church on a weekly basis…

Where am I going with that?

Fast forward several months, Emily has been diagnosed and I am spending a lot of time on the internet. I found 2 support group for the families with children that has the cri du chat syndrome. One in the UK and one in the USA. No facebook at that time, we exchanged email addresses and communicated via message board and email only.

Suddenly my mailbox was full of “God” emails……

I HATE GOD emails!

Here we go, I wrote it…… for the first time! If you sent me “God” emails, please note that they were deleted.

I was learning to live with Emily’s diagnosis, adjusting to our new reality, spending too much time at the hospital and in therapy, I was learning who my real friends were and struggling with all of this!

The fact that some people believed that God gave me a severely handicapped child was appalling to me. The fact that God would think that I was so good that I should be the mom of a special need kid just sounded wrong. The fact that God decided I could do this made no sense…. Why in the name of whomever would my daughter, husband and I deserved this new life with all the challenges that were coming with it??? If God really had anything to do with this, God was out of my life!!!

Harsh? Maybe but although well intended, those God emails were hurtful! Extremely hurtful and I couldn’t take it anymore. I removed families from my email list, block some senders and forwarded all emails referencing God to my junk mail folder…. It didn’t feel right but it had to be done.

During that difficult time, we were invited to a christening at the church where we got married, the priest who married us was performing the christening….. I didn’t really want to go, God and I were not on speaking terms at the time but my mom raised me well and our friends invited us so we went.

Before the ceremony, I had a chat with the priest….

I told him about Emily’s diagnosis and asked him if God had anything to do with it? He smiled and told me that God had nothing to do with the fact that Emily was missing a piece of chromosome….. he told me that God was busy with other things and didn’t decide to send a special need kid to this family or that family. He told me that God could help me get through it, he could give me courage or strength when I needed it but that was it.

God didn’t pick me to be the mom of a special need kid and he didn’t decide that Emily would be struggling forever.

Thank god for that!

Who would want to worship a God who would do that anyway? Certainly not me!

His simple answer worked for me! I didn’t start going to church after that but I was in peace with the fact that all those God emails were going to my junk email folder 🙂 And just so you know, they still do!

Early May 2013

In the spirit of the 2nd annual Cri Du Chat Awareness week, I did something I never thought I would do…… Actually, I always figured it would be pointless to do…… I sent a letter to the Director of Medical Genetics, McGill University health centre / Montreal Children Hospital. I wanted him to know what happened when Emily was diagnosed.

I have removed the names from my original email as I didn’t ask permission to use them.

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Good afternoon Dr. xxx,

I am hoping this email finds you well and that you will allow me to have your full attention for maybe 10 minutes.

In October 1999, our daughter Emily was diagnosed with the Cri Du Chat syndrome. At the time, we lived in Mont-Tremblant, Qc and Emily was followed at the Montreal Children’s hospital. Dr. xxx was her neurologist and thanks to all the test she had ordered for Emily, we finally knew.

During our meeting with the Genetic resident and her student ( I am sorry, I am sure I am using the wrong terminology…) we were told that Emily would never walk, talk, recognize us, show emotions or feed herself. We were told to expect that our child would be in a wheelchair, fed by tube in her own world… At no point were we told that this was worst case scenario… when I mentioned that our 15 months old daughter recognized voices and smiled at us but not at strangers, I was blankly told that this was my imagination, that our daughter did not recognize us. In the month following Emily’s diagnosis, I called the clinic inquiring about various component of her diagnosis, I was labeled the mom who went on the internet a lot…. I can live with that! I am sure I have been called worst over the years of advocating for my daughter…

Today, Emily is a lovely 14 year old girl, she is nowhere near her classmates in school knowledge but she walks (with a walker at 3 and independently at 4). She is toilet trained (took us 9 years but we got there). She is bilingual… understands English and French but tends to answers in English first. Her voice is different than the other kids but most people understands around 80% of what she says, for those lucky enough to spend lots of time with her, they understand her 100%. She is tall, 5’7” and her weight is proportional to her height (120 lbs or so). She is stunningly beautiful in her own way. I have attached a picture for you to see her! Every time we get to see a new doctor, they have their big book open and they are expecting worst case scenario, they are quite surprise when she walks in.

The picture attached was taken in Bermuda last fall. Emily travels with us, we’ve seen lots of amazing places together and we will continue to do so. She is curious about art, loves to try different food (she loves sushis), has an amazing imagination and struggles in math. She wants to be better at reading so she works with a tutor on her math and as a reward, she gets the equivalent time to work with a tutor on her reading…

May 5th to 11th is the 2nd annual Cri Du chat awareness week! As you now know, Emily has the cri du chat syndrome and this brings me to the you tube video attached. The video was developed for the awareness week and Emily is in it… 🙂

Considering that the stats now say that 1:35,000 newborn will have the Cri Du Chat syndrome, the likeliness to meet one while walking around is pretty slim. It is also quite rare for doctors to see a child with CDC as we have noticed over the years. As for us, we still haven’t met another person with the same syndrome as hers but all this will change this summer when we will attend a conference in New York for individuals with cri du chat syndrome and their families.

The video is just over 4 minutes long and the objective is to raise awareness, to show that instead of focusing on all the things our kids can’t do, we should be told that the spectrum is wide and that our kids can do lots of things! The video will be use in PR campaigns and send to hospitals and tv stations all over the world! It’s informative and really well made. I have put the link below for you to have a look and I would appreciate if you would share it with the team at the Montreal Children’s hospital.

I wish I had been told that the picture that was painted for us in October 1999 was worst case scenario!

Emily is really excited to be in the video 4 times!!! She feels like a superstar and is keeping track of the views count on you tube!!! 🙂

The video is on you tube, just search International cri du chat syndrome awareness video!

Regards,

Pascale (for Emily)

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Not only did I get a reply to my email but he forwarded it to all his colleagues within the genetics dept. at the University and Hospital. I got an email back from a genetic counsellor asking if she could give my contact info to a family she met earlier in the month with a baby boy who was diagnosed with the Cri Du Chat Syndrome

I shared this email with some friends, and again, their reactions were overwhelming. They asked me to share more information, told me I should write a book about Emily, her syndrome and our life….

Instead of a book, I started this blog!

Once again, Emily pushed me outside of my comfort zone. I have protected Emily and our privacy for almost 15 years… This is our journey.

I hope you enjoyed the video!!!