Being At The Beginning

Hi. I’m Cheryl. This entire blog is going to be about me. I’m not a narcissist,I’m just me. since 1997 I have been Jamie’s Mom. Until my very last breath I will be Jamie’s mom. On November 19 2016 my Jamie took his last breath.  It was that day that I realized just how much of my identity was tied to being “Jamie’s Mom”. I am trying now to adapt to the “new normal”. I am feeling a little lost.  I casually mentioned to my husband that I wish I could write a book, “you can” he said. “I don’t have any good ideas” I said. “Write what you know ” he countered. “I don’t think people will pay to read a book of snide comments and snippy sarcasm” and I laughed. “Write about being Jamie’s mom” he said.  I thought on that. “Maybe one day, for now it’s still too raw”. Then we continued on with our evening. Now, 3 hours later I am sitting here writing this. Yes it’s raw and I am trying to cry quietly so I don’t disturb anyone else in the house, but maybe raw is when it’s right, maybe this will help put me back on an even keel, or maybe it won’t. Who knows.

They say it is best to begin at the beginning, so that’s where I’ll start. I actually wrote this post for a different blog many moons ago, but since I’m the one who wrote it the first time, it’s not plagarism..

————————————————————————–To start off I should tell you about Jamie. Wow, this is harder than I thought. They say it’s best to begin at the beginning so I’ll start there. Jamie is my first born son. He came into this world at 4:44am on February 9th 1997. I still remember ever minute of that first day in perfect clarity. When he was born it was apparent from the first moment that something was terribly wrong. The doctors whisked him out of the room without a word, they took the baby and my husband and they were gone. I was alone 5 minutes after giving birth and scared out of my mind. A nurse came back in and told me they were moving me to a private room, I thought wow, that’s nice I don’t have that kind of coverage but I’ll take it. The nurse then stepped out the door and spoke in a voice I can only assume was louder than she expected and told another nurse that they did not want to put me in the same room with the mother of a live child. I thought my first born child had died. My entire world felt like it collapsed at that moment.

I was moved, in a state of shock to my room. The doctors then sent my husband in to face me alone with news of our child. My husband just looked at me with the saddest expression I had ever seen and said “Honey there’s something wrong with the baby”. I was overjoyed and terrified in the space of a heartbeat. On one hand, my child was alive, on the other something was wrong. “they don’t know if it’s a boy or a girl” was all my husband could choke out. I didn’t say anything, my mind was screaming but I could not manage a single sound. One hour later my newborn was airlifted to Sick Childrens Hospital in Toronto.

I’m going to summarize the next couple of days, as if I go into all the detail I remember a.) I’ll be a blubbering mess and b.) this blog post will be huge.  It took 3 days and endocrine testing to find out we had a boy. That was surreal, as what is the first thing people ask when they find out you had a child “What did you have?”, by the middle of the second day I was snapping back with “A duck, I had a baby you moron, what did you think I was going to have?”. I stunned more than one person to silence with that.  After that the test results started coming in to give us the laundry list of “issues & complications”. It turned out that Jamie had a rare chromosome disorder called 13q deletion. The way it was explained to me back then was that chromosomes are the blueprints of the human body. Imagine if a builder was asked to construct a multi story house on a tight deadline and once it got started he realized some of the blueprints were missing, and couldn’t be replaced. He would what he could and hope for the best. That is what Jamie did.

Here is the list encompassing almost all that is my boy. He is blind, deaf, non-ambulatory, he has a gross brain malformation called holoprosenchephaly, he’s hypotonic, has a heart defect, seizures, malformed genitalia, is fed through a tube in his stomach and there other little issues. But he has a great smile and a laugh that can’t be beat. They told us he would only live 3 months at the outside and that we should be prepared. That was 13 years ago. Doctors, it turns out, can’t see the future and are not infallible. They do the best they can, just like the rest of us.

———————————————————————-

So that’s the beginning of my story. I’m not sure how exactly I’m going to tackle this, whether I am going to go chronologically or just skip around the almost 2 decades I lived it.  Feel free to ask questions, I don’t mind and I will answer them as best I can. I can’t promise that this blog won’t make you sad, or that I won’t swear, or make wildly inappropriate comments and observations, it is however a blog about me, and that’s who I am.

~Cheryl~

Author: CheryltheOCM

A mom of 3 in the new millennium. Taking life one day of a time

3 thoughts on “Being At The Beginning”

  1. Your writing is both beautiful and painfully honest. As someone who has a one sibling born with a disability and has recently lost another sibling, I can relate to many aspects of the journey you are on. Your writing has also provided me with a deeper understanding of the emotions that my parents experienced when my sister was born (their first child.) Thank you for sharing your truth.
    Cheryl W

    Like

  2. Your writing is both beautiful and painfully honest. As someone who has one sibling born with a disability and has recently lost another sibling, I can relate to many aspects of the journey you are on. Your writing has also provided me with a deeper understanding of the emotions that my parents experienced when my sister was born (their first child.) Thank you for sharing your truth.
    Cheryl W

    Like

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