this

My baby is still not home with me. This has me frantic with worry. It is similar to when the boys were teenagers and I would be lying in bed waiting to hear the back door creek open so that I knew they were home safe and sound after a night out with their friends. This worry, however, is a kazillion times worse. It makes me sick to my stomach. I don’t sleep because I am wondering where he is right at this very moment. I need to know where he is. I need to know that he is on his way back to me. I need proof that this is truly happening. I need. I need. I need.

All I do is pace. I can’t sit still, yet, I can’t accomplish anything either. My FitBit hasn’t had to remind to get my hourly steps in because I am way ahead of its schedule. It must wonder just what the hell has happened to me because, prior to this, it has had to remind me to get my steps in way more times than I’d care to admit. I will soon have a path worn in the floor.

I have fallen off the sugar wagon with an explosive thud. Mark and I had given up sugary treats and desserts back in September and now I can’t shovel it into me fast enough. There have been so many delicious pies and cakes and other delectable goodies delivered to our house and, since I know they are there, I cannot stay out of them. The more I eat, the more I want. The more I devour it, the more I berate myself. I had two pieces pie for breakfast the other day. Pie! For the love of God and all things holy, what is the matter with me?

It hit me in the early hours of this morning. Each and everyone of these baked goods has been made and delivered with love. Wonderful, kind and generous people are reaching out to me in ways that I will never be able to adequately express just what their kindness has meant to me. The best I can say right now is that you are sustaining me. Food and words and cards and messages of condolences and sharing your memories of Dylan with me are filling me up and making me feel as whole as I possibly can right now. You are making the excruciating pain of his loss somewhat easier to bear. Thank you for that.

I debate about whether I should be sharing this with you. Maybe it’s too much. Maybe it’s too raw. Maybe it will help somebody else going through this horrible, devastating and excruciating grief. All I know is that I am driven by the written word and if I do not put my thoughts and feelings to paper, I will lose this moment forever. I cannot lose another thing in my life right now. I am barely existing as it is and one more loss, whether minuscule or not, could be the very thing that pushes me over the edge.

I feel like I am rambling. I feel like I am lost in the deepest chasm there is on this earth and I am never going to get out of it. My mind wanders and I zone out when I know I should be paying attention. I can’t help it. My world has been turned upside down and it is never going to be the same again. I know that I will have to adjust to a new normal, a new normal that I would do anything to turn the clock back on so that I wouldn’t have to go through it. It’s wishful thinking, I know, but the reality of my new existence scares the ever living daylights right out of me.

Nothing in life prepares you for this moment. Every challenge, every painful experience and every stupid little thing I thought was a big thing up until I heard the words, “Dylan’s gone,” was absolutely positively nothing in comparison to this. This. This is raw. This is excruciating. This is the absolute worst.

This.

Thank you for bearing with me. Thank you for listening. Thank you for being my calm in a raging storm that feels like I am going to be trapped in forever. Thank you for telling me that once Dylan’s celebration of life events are over and how, when everyone else’s lives go back to normal, you will be there for me because, goodness knows, I am going to need you if I am ever going to survive this.

This.

I will survive.

This.

if only it was a dream

I have been watching life go by in slow motion this week. One way I can describe it is that it has been similar to watching a dream sequence in a movie. Another way is to think back to one of those movies you’ve seen where the momentum of the story is slowed down in order to emphasize a particularly poignant moment. Another thing I can add to that description is that it also feels like I am on the outside looking in on someone else’s life but it’s difficult to see what exactly is going on because the window is so thick with brown, disgusting dirt and dust that I know I am missing the important parts of the show. Surely, this cannot be my life right now.

And yet it is.

I have watched people go about their daily lives, bustling around, smiling, laughing, some not so happy, others seeming impatient while standing in line, angry for no reason, others oblivious to anyone else in the world except themselves. All are unaware of my broken heart, unaware of the deep cavernous grief I am experiencing at this very moment. I want to scream at them, yell at the top of my lungs “DON’T YOU KNOW MY SON JUST DIED?” I don’t, of course; yet I cannot help but wonder just how the hell life can go on for everyone else while my has stopped?

And yet it does.

Dylan _ square photoMy beautiful, cherished and much loved son died suddenly but peacefully in his sleep on July 29, 2017 from a intracerebral hemorrhage sustained from a fall down his stairs. He was 28 years old. Much too young, much too vibrant, much too full of my dear, sweet boy, much too full of everything to be gone.

And yet he is.

There is nothing on the face of this earth that can prepare you for this kind of pain nor is there anything that can take this crippling and nauseating and excruciating and gnawing and heavy and raging and tortuous and violent pain away. It feels as though my heart has been ripped from my chest, twisted, squeezed and crushed on its way out. There are moments when I cannot breathe, so many moments when I feel like I am going to be sick. I only eat when food is placed in front of me. I have no taste, no desire to nourish my body. I want to curl up in my bed and never come out of my room ever again.

And yet I do.

Sleep is elusive. The first few days after Dylan died I was afraid to close my eyes for fear that I wouldn’t see him if I did. Where would he go if I closed my eyes? How would he know I was thinking about him every minute of my day if I was sleeping? Last night, I managed a few hours of sleep in a row rather than the five to ten minute chunks of sleep I have been getting. My first thought upon waking at 3:00 a.m. was, where is he?

And yet I knew.

Dylan at the Ocean

He is in my heart, my soul, my very being. He will be in the sun that rises and sets each and every day and he will be in the gentle breeze that blows through my hair. He will be in each raindrop and snowflake and leaf that falls for the weather never bothered him. He will be in my laughter, my tears, my dreams, my very breath, and in every single thing I do from this day forward. He will be there encouraging me to get up on the days I do not want to. He will be there urging me on, one day at a time, one step at a time, one breath at a time, when the last thing I will want to do is carry on with my life.

And yet, somehow, I will.

AND I will carry on, not only for me but for Dylan as well because that is what he would have wanted. I will carry on for my husband, Mark, and for my sons, Ryan and Liam because that is also what they will want and need. I need to survive this. I must survive this. I have to survive this.

And I will.

Dylan and Me

This is the last picture of Dylan and me together, taken December 31, 2017, Edmonton, AB.

Dylan would expect nothing less from me and that’s just the way it’s going to be.

 

a mule named myles and an awkward sleep study consultation

The other night I had a dream. I was walking along one of the streets I lived on when I was child with a mule named Myles. Just to be clear, I was walking with Myles in my dream; Myles didn’t live with me. I can’t have you thinking that I was one of the cool kids on the block for having such a unique pet because, believe me, I was never one of the cool kids.

Ianimated-donkey-image-0098n my dream, Myles was a very respectable and well behaved mule. He plodded along, slow and steady like, listening intently to my stories about growing up on Wallace Street.

After we stopped and looked at the apartment where I lived with my parents for several years, we headed on over to the grand home that was beside us. It belonged to Mrs. Mills. While I don’t know who lives there now, in my dream it was Mrs. Mills’ daughter who was sitting on the sprawling Victorian porch watching Myles and me meander across her lawn to talk with her. She greeted us warmly.

MMD: Oh, little Linda, how lovely it is to see you!

Me: Thank you, but little Linda isn’t so little anymore. She’s put on a few pounds since you’ve seen her last.

MMD: Never mind that. You’re still the same to me. Come on up on the porch and join me for a cuppa tea, will you? Who is this you have with you?

Me: This is Myles. He is a very good mule. He won’t cause you any trouble.

MMD: Of course, dear. Any friend of yours is a friend of mine.

After getting settled on the porch, Myles stretched out on the floor before me, I began to tell Mrs. Mills’ daughter about the time I had taken some flowers from her mother’s beautiful gardens without asking. I had wanted to do something nice for my mother and thought she would be pleased to have a beautiful bouquet of flowers sitting on the kitchen table for her to admire.

do not pick flowers gif

Obviously, I didn’t consider the act of taking the flowers as stealing. As someone who was always terrified of getting in trouble, I must have thought that taking the flowers would be okay because they would be from Mrs. Mills’ garden and she would have understood the kindness behind my gesture. All right, I probably thought, who the heck was going to miss a few flowers anyway? Cut me some slack, will ya? I was only five years old when I engaged in my first criminal activity.

My mother was livid. My father had to stifle his laughter because he saw me as a chip of the old block which infuriated my mother even more. I don’t remember what Mrs. Mills’ reaction was because I was scared shitless witless while apologizing to her for what I had done. My ears ring to this day from the tuning my mom gave me and rightly so. Even though my heart was in the right place, it was wrong what I had done.

Dreams are a funny thing. Why would I dream about this now and why was I walking with a mule names Myles? Be damned if I know but what I do know is that by affecting a wee change in the time I take one of medications, my dreams are now less violent and less threatening compared to the months of night terrors I had been experiencing. Myles is proof of that.

My night terrors were awful. While I don’t remember each one exactly, I do remember how all but one involved children being harmed in some way, usually in the form of being kidnapped or assaulted. These terrors were violent and I acted them out just as violently. Poor Sauerkraut was punched, kicked, nearly kneed in the crown jewels, and karate chopped across his neck. On one occasion, I almost pulled out a handful of hair from the back of his head. I have screamed out loud trying to save these children and I have cried openly for their loss. It has been a roller coaster of emotion trying to live through them.

Women+boxing+face+punched_c08981_5226159There is one nightmare I remember clearly, though. Some harlot was hitting on Sauerkraut. Thankfully, I was facing outwards in bed because I  woke myself up just as I threw one hell of a right hook and flattened that bitch vile woman right into next Tuesday. No one is taking my man, let me tell you.

When my family doctor heard all of this, in between fits of laughter over imagining me taking down some slut harlot from Quadeville, as I so eloquently put it, he ordered another sleep study test, my third in eight years. Since I had been diagnosed with sleep apnea after my first sleep study, he wanted to make sure that my CPAP machine was working properly as well as determine if anything else was going on.

When I told my neurologist about the upcoming sleep study and about the night terrors, he warned me to be prepared for the outcome. He is also a sleep study specialist and he suspected that I had more than one sleep disorder going on. I replied, “Jaysus H. Christopher, I have enough issues to deal with, I don’t need anymore.” It’s a good thing my neurologist knows me well (we’ve been marching through my MS symptoms together for over fifteen years now) because, in my futile attempt at swearing in a less swear-y manner, I forgot that his first name is Christopher. My bad.

Anyhooooo, Dr. Jaysus H. Christopher was right. I do have four different sleep disorders which were confirmed by a really nice sleep specialist (whom I will refer to as Dr. Sleepy O’Study because she had a lovely Irish accent) via video conferencing. There’s the sleep apnea thingie which is well controlled as long as I use the CPAP machine. I have some crazy thing called periodic limb movement as well as some other mumbo jumbo fancy assed name for acting out night terrors. As for the fourth disorder, well, I really can’t say because, by that time, I was overwhelmed and had completely zoned out.

In my defense, the room where the video conference was held was extremely warm and dark-ish. The sometimes delay in the video confused me and I couldn’t hear the doctor all that well. AND what I could hear was completely distracting because of, hell-oooooo, her lovely Irish accent. I mean, how was I expected to concentrate with that beautiful Irish lilt explaining things to me? And, and, did I mention that I was tired … like so friggin’ tired because I have four sleep disorders? It seemed like a lot to expect from someone like me on a good day let alone under these circumstances.

Sleep Study

What fresh hell is this?

Here’s what Dr. Sleepy O’Study said versus what I heard her say:

  • you have industrial strength snoring (you are so un-lady like, my gawd, it’s embarrassing).
  • you have very severe leg movement (you left the sheets and blankets in such a twisted heap of a mess that we had to bring in a special hazmat team just to remake the bed).
  • you act out your dreams (you are so lucky your husband doesn’t leave you for that slut harlot in Quadeville because she would never ever beat him up).
  • blah, blah, blah, blah, blah (if awards were given out for the worst sleeper EVER, you would win hands down. Hopefully, it’s a nice crystal trophy and not one of those big ugly cup thingamabobs).

say-what.gif

Thankfully, I saw Dr. Jaysus H. Christopher shortly after that and he made a simple change to one of my medications. Instead of taking it at bedtime like I had been, I now take it between 5 and 6 p.m. The result has been amazing; I now dream of mules and childhood crimes instead of harlots trying to steal my man.

Dr. Sleepy O’Study and I decided to have my neurologist handle my sleep disorders in addition to my MS issues because of the whole ‘two birds, one stone’ type of common sense thingie. Once Dr. Jaysus H. Christopher receives copies of my study, we’ll explore treatment options for the other two disorders. Apparently, he doesn’t trust my interpretation of my sleep study test. Imagine.

Myles the mule: 1
Night terrors: 0

My something new:  discovering that mules are totally nonjudgmental and really cool to hang out with.