cri du chat syndrome | 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!

Within a year of Emily being diagnosed, we are spending most our free time at the hospital…

We work weekends and take days off during the week in order to go to the hospital….

We break our vacations into tiny pieces in order to go to the hospital….

A trip to the hospital requires a full day. We live a couple of hours away, it takes longer when we factor in traffic so sometimes we actually need to get to Montreal the night before due to early appointments.

So, once a month, we take a day off to drive to Montreal to meet with our physiotherapist and occupational therapist to learn how to play/work with Emily. On the way home we buy whatever supplies we need to practice what the PT and OT are telling us we need to do.

Both therapist are amazing and our OT believes I am the greatest mom….. 🙂 I liked her even more for saying that! She is convinced I should quite my job, go back to school and become an OT….. WHAT??? I work in accounting in the hospitality industry and I LOVE it!!!!

I had to explain to our OT on multiple occasion that the only kid that is allowed, to sneeze, vomit, pee, cough or splatter any other type of liquids on me is Emily!!! Slowly, she gets it, she stops asking me to go back to school….. but than she asks me to go to University!!! As a public speaker!!!! WHAT???

Me! A public speaker at McGill University!!!

Me! Little French me with limited English at the time!

Me, scared to speak in front of a crowd….

Me?!?!?

I had no idea what to say to that…. The university needed guest speakers and they figured out that a parent who was really involved in their child’s treatment would be great… ok, I can see why that sounded like a good idea!

But me???

Now, I am scared! I know I can’t do that!!!! But if did do it…. if I managed to touch 1 student…. it could have an impact on so many people…. so many patients……

If telling our story could make one student realize that my daughter is not a syndrome, that she is a little girl and should be treated as such! If telling our story could help other kids be treated as kids, other adults be treated as human being and not as a syndrome, not as a disability or as someone who had a tremendous accident…..

I could make a difference!

Could I do that? Wow!!!! I was going to do that. I only had 1 request, I needed Emily there with me…. I figured the students would be looking at her not at me… 🙂 The university was quick to reply that Emily should be there with me.

So I did it, I agreed to be a guest speaker at McGill University!

Not only did I go that year, but I went the following 2 years! On 3 occasions Emily and I were invited to McGill University to speak to a group of occupational therapists in the making. From one year to the other the teachers would tell the students about the progress they were seeing in Emily. First year, she sat in her stroller, second year, she had a walker, third year she was walking around, looking at the students and eventually settling on a desk in the first row where someone gave her a piece of paper and some highlighters…. I was delighted to see her work the crowd!!!

From year to year, I got better at it! My English was improving and I knew I was making a difference.

When we left Quebec to move to New Brunswick, the teachers at the University were sad to see us go! From time to time I wonder if they still have parents going to the University to talk to the students, I hope they do! I wonder if one of those students remembers Emily and I coming to visit…. I hope at least one students per year remembers us and has become a great OT with amazing human skills allowing him or her to see a little kid or an adult as such and not as a case or a syndrome!

I hope Emily and I made a difference!

To this day, I believe I wouldn’t have done this if it wasn’t for Emily pushing me to be a better person even before she could speak.

Emily took me from “I can’t speak in front of a University class in my mother tongue there is no way I would do it in English……. ” to ” Emily is not giving up on achieving milestones, who am I to give up on achieving milestone?”

We are never too old to learn!
Thank you Emily for helping me grow!!!

How are your kids pushing you to be better? Would you recognize them pushing you to grow?