Family | Lessons from my daughter

Emily’s 4th Birthday…

We’ve moved from our lake side house to a tiny apartment just over 2 months ago…. why we made that move is a story for another day!

Today we are talking about fishing!

For Emily’s 4th Birthday, we rented a cottage for the weekend. We were in the woods at the Fairmont Kenauk with access to a river for fishing.

Our guest list was impressive and we were all staying in the same cottage!

Emily, Jon and I. My dad and his wife. My mom. My in-laws. Melanie (Emily’s god mother). My big brother, his wife and their 2 boys. My little brother. 13 people in 1 cottage.

We had a blast!

We wanted to take Emily fishing on a small boat but she refused to get on the boat so Jon sat on the dock with her and took time to explain to her how to fish…. They caught absolutely nothing but I took one of the most beautiful picture ever… My husband and his baby girl fishing. 🙂 She was so small!

Later that weekend, my father-in-law suggested we took Emily to the hatchery so she could at least catch a fish!

If you don’t know what a hatchery is, google it! Its where you “grow” fish 🙂 The last pond in the process is full of really nice trouts just waiting to be picked up and dropped in a lake somewhere on the property.

For a fee, someone can fish in there….. you can barely call it fishing… the fish are almost jumping out to come see you 🙂

Emily was still new at walking so standing on the side of the lake to fish was somewhat dangerous. Fred (my father-in-law) suggested we sat Emily on a bucket…. an upside-down bucket that is.

This takes us to this second picture…. Once again, an amazing picture.

fishatkenauk

Emily caught some trouts and was super excited that she could fish! One more thing we could cross off her list! She was a fisherman!!!

From that point on, whenever Emily saw Jon’s fishing rod out, she got excited because she thought she was going fishing. Whenever he went fishing without her, she got upset…. She didn’t speak but it was obvious that she wasn’t pleased with her dad! When we saw Jon’s parents, Emily was hoping to go fishing… Jon and his dad enjoyed fishing and Emily knew it.

…….

8 years later, my father-in-law passed suddenly and we opened-up our house to our family. Many people came by after the funeral. We were obviously all sad, we were trying to make sense of a tragic loss and we were sharing memories and drinking to the memory of a great man…

Suddenly Emily asked if she could say something.

……

…..

This is always a little awkward, we never know what Emily will say, never know if it will be appropriate to the situation or if she is going to talk about Justin Bieber…..

…….

That day, we were all family… everybody knew Emily… we gave her the floor.

Emily was 12 years old…

As she stood in the middle of our kitchen she told everybody that her best memory was of her grand father teaching her how to fish. She told the story of her birthday party and that her “papie” took her to the pond and turn the bucket upside-down so she could sit and fish with her little purple rod…

She understood perfectly what was going on.

At the hospital, I had asked her if she would like to go see her “papie” and she said no. When the doctors told us it was over, I tried to explain to her what was going on… instead she explained it to me.

“Papie is gone, I won’t see him anymore but he is in my heart. I can still talk to him, in my heart”

She understood perfectly what was going on… She didn’t cry… It took months for her to even talk about her “papie”… actually, she didn’t talk about it, she wrote a story at school about how she sings to her “papie” when she misses him. She sings “I miss you” from Miley Cyrus…

She understood…

My daughter, the one with the extremely rare syndrome was the one who understood what was going on… Of all the people impacted by the loss of a great man who left us way too early, she understood how to grief and understood that if she believed he was still with her, he would forever be with her.

From the day she was born, they were connected and from what Emily is telling me, they still are!

In thinking of the people you have lost, could you do like Emily and keep them alive within you? Smile when you think of them? Sing to yourself when you need peace?

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!

………

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!