The New Normal

7 months. Feels like yesterday but it’s been 7 months.

7 months  – 6 holidays , 3 birthdays a new job, and a new family member. Meet Budrow Wilson McFluffybutt

Budrow McFluffybutt

This handsome fellow has brought some much needed joy into the house. The kids needed him, my husband needed him, I need him.  He is just so darn happy all the time, dumb as a stump, but happy. We love him.

Now it’s all about adjusting to the new normal. They say that this will get easier, I call bullshit. It’s not getting easier, you just get better at hiding it.

That’s not true either. It doesn’t get easier, that’s the wrong word, it just gets different. I can say his name without having a complete meltdown.  I can reminisce over memories for little snippets of time without shutting down. I still feel on the verge of tears all the time, but they don’t fall as often.  I have good days and I have bad days but they are about even now, that’s progress.

My younger two laugh again and that’s awesome. They are starting to hang out with their friends again and go out and have fun. It is nice to see some of the weight lifting from them, they still have bad days too, but not as often.  My husband and I are starting to smile again, we have even started to venture out.  That has been the weirdest part. Making plans, we can do that now. There is no constantly worrying about what might happen if we actually leave the house. We can take long drives without having a constant eye on the clock. We can take the kids and the dog to the beach and just be mellow without a full medical kit. It’s an adjustment.

I fall asleep easier now and I don’t wake up expecting the worst because that already happened. It is still very much one day at a time and I have come to trust my mothers logic on how to deal with it.  When I really struggle I just tell myself I’m not going to think about that today, I will think about that tomorrow.

Well look at that, I got all the way to the end without any tears. Progress.

The Seven Stages

The 7 stages of grief. We’ve all heard of them

 
Denial
Guilt
Anger
“Depression”
Loneliness
Acceptance.
Hope

 
It is seen as some sort of mighty blueprint for how to deal with trauma. I never really gave it any thought. I was too young for that kind of melancholy nonsense. I was so naive. But wait, I’m sure some of you are saying, Jamie lived. You’re precious boy was alive, why did you grieve? Why weren’t you just grateful?  You’re right, my baby boy was alive, but my dream had died. My perfect healthy first-born that I had pinned all my grand hopes and dreams on died that day.

When we went for the ultrasound we were told we were going to have a healthy normal, if someone larger than average baby girl. (The distance for which how far that missed the mark by is a discussion for another day.) We were having a girl. I can’t tell you how excited I was. In my mind I was already picturing the dance recitals, the trips to girl guides, baking her first cookies. I was over the moon, it was going to be so perfect. Then what I never in a million years would have thought could happen, happened. Reality knocked me on my ass. So I grieved, right or wrong, I grieved.

This was not happening. I am a good person. I am ready to be a great mom. This was not happening. – Denial

Oh my god, those diet/caffeine pills I took when I was 16. They screwed me up. This is all my fault – Guilt

Quit looking at me like that. I don’t want your pity – Anger

Why is everyone else having these perfect wonderful healty babies. Why do they deserve it and I don’t? – Depression

Please just leave me alone I can’t deal with anyone else. – Loneliness

What do I do now? How do I do this? – Acceptance

This will get easier. Things will get better. – Hope

And on and on and on it went. Just cycling through the stages trying to find my way. What they don’t tell you is that you don’t just progress through the 7 and then you’re done, you move on with your life. You go through all the stages hundreds of times, sometimes 2 or 3 stages at the same time. You feel like you’re drowning. It’s hell. But you learn to live with it. I learned to live with it, I had to, I had Jamie and he needed me. He needed me to be the very best that I could be for him. He needed me not to waste my time fighting something that wasn’t going to change.

I know this blog is not starting out with a very positive spin, but in the beginning it was hard to be positive. This blog is going to be my catharsis. For 19 years I have walked this road and no-one outside my loving, faithful rock of a husband has known what this has been like. Now I am putting it out there for all to know. This journey has been full of good times and bad and I will get to all of them. One day at a time. It’s how I’ve always tackled it, one day at a time. I will take this day as it comes and worry about tomorrow, tomorrow.

Cheryl

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.

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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~