It’s funny in life what we remember and what we don`t. Why does our mind hang on to some details but let’s go of others? Is it the importance of them, or in turn the insignificance of them? I really don’t know, because I forget things you would think would be extraordinarily important, but remember inconsequential tiny details like the tile on a bathroom floor.
All of us have moments or events that happen that are life changing. Ones that you can never go back from. That change your worldview. That transform who you are to the core. What do you remember about those events? What don’t you remember? How do our memories of those events shape who we are now and how we navigate the world in the future? Or are they just that … memories? I don’t have the answer to any of these questions. But I do know that as time marches on I am afraid of losing my voice … or forgetting who I was … who my family was … during moments in time that for better or worse are a part of me and that have made me who I am today.
Not very long ago I made a post called “That Time of Year Again”. In it I talked about the anniversary of a certain day and how much I tried to avoid remembering it, but memories are a tricky thing to avoid. So I decided instead to embrace them.
The following is a glimpse into the first nine hours into a part of my life you would think I would remember EVERYTHING about. It turns out the things I do remember surprised me – as did the things I don’t. Maybe that’s just me. Or maybe you have similar experiences when it comes to memories in your own life. Either way, it has been interesting to think about as I recollect a time that should be so clear to me.
I always remember it as Summer Solstice. Summer Solstice – the longest night of the year and the first official day of summer. I always thought what a great night to have a party. You know what I mean – one of those beginning of summer parties that everyone counts on coming to every year. Summer Solstice would be a great night for a party.
But these nine hours don’t really start on Summer Solstice – they start the night before.
My daughter Megan had a soccer game. She was five years old and I was convinced that soccer would be as good as sport as any for her to try. Megan thought that was just great … but she thought picking daisies on the field while the rest of her team actually ran after the ball was indeed much more fun. She still to this day would rather pick daisies than kick that black and white ball around the field!
Craig was working and I brought Megan to soccer practice with Mark in tow. Mark was 3 years old. 3 years, 2 months and 27 days old. It was a hot night and he fell asleep on my lap as I sat cross legged on the ground. Did I bring a chair? I think I did. I think I brought a chair but he fell asleep before I got up to get it. Him falling asleep on my lap will make so much more sense within 24 hours. But at the time it just seemed normal that my three year old was in the middle of still needing his naps.
I don’t remember anything else about the day – what we did earlier in the day or coming home. I don’t remember anything standing out until I got Mark ready for bed.
What DO I remember from that night? I remember the rash. I remember exactly where I was in his room. We were renting a house waiting for ours to be built so it didn’t really feel like ‘his’ room, but it was. I was kneeling down. The floors were hard. I remember that. I hated those floors. Laminate throughout the whole house laid right on cement I’m sure. I was kneeling and I took his shirt off over his head. I remember his back being covered in what looked to be a heat rash. I don’t remember anything else. I don’t remember tucking them in or putting them to bed. But I do remember going to the computer and getting on the internet. I remember something not sitting right with me.
I can still see the page that I found as clear today as I did all those years ago. I remember scrolling down and down until I found the description of his rash. It was the last one. It said go to the Emergency Room Immediately. I remember it was in all capital letters.
I remember walking him up the walk way to the clinic. I was holding his hand and he fell on the paved walkway. He cried. He was wearing sandals. Him falling seemed like a big deal to me. Why?
I remember waiting in the waiting room of the Berwick Clinic. I remember what chairs we were in. I don’t remember how long we waited or how many people were there or not. I remember the room we eventually went in but I do not remember how we got there. I remember the doctor and the little plastic rectangle he put over Marks rash. It looked like a lab slide. I know what he was doing now, but I didn’t at the time. Did I ask? I don’t remember.
I remember him having Mark lay down in the bed and …what? … feel his stomach. I know now he was checking the size of his liver which would have been severely enlarged. He told me none of this. I remember it was then I started to cry. He hadn’t said a word – but somehow I knew our lives would never ever be the same. They were not sobbing cries. Just big fat silent tears that streamed down my face. I remember him asking me why I was crying. I don’t remember exactly what I said, but I remember him confirming that I had reason to cry. Not with any sort of diagnosis – but I remember him confirming them. What did he say?
I remember walking with him to his little reception area and him calling Valley Regional Hospital and telling me we didn’t need and ambulance – but we needed to drive directly there. Where was Mark? Still in the room? Who was he with?
I know I called Craig then, but I don’t really remember doing so. I do clearly remember seeing him when he came though. I was waiting for him outside the room and I saw him at the end of the hall. I remember seeing him standing there. I will always remembering him turning to look at me. He seemed so far away down that hall. I don’t remember what I said to him or what he said to me.
I don’t remember the drive to the ER. At all. I assume Mark fell asleep. I know this – but I don’t remember this. I don’t remember my conversation with Craig. Not even a little. I remember it was dark. I remember Mom and Dad came down to be with Megan who was sleeping in her room that really wasn’t hers.
I don’t remember checking in. I don’t remember being rushed in. But I do remember exactly which bed we ended up in at the ER and I do remember getting bloodwork asap. Mark was asleep. He had never had bloodwork before and I remember the phlebotomist asking me if they should wake him up. This question amazed me. I think it was then that I thought – maybe he can sleep through his whole night, and everything will be fine.
I didn’t really know what the right answer was – so we left him sleep. It didn’t take me long to know that this was the wrong answer. Who wants to wake up in a strange place and find strange people sticking you with sharp objects? It seems so obvious now, doesn’t it? It seems so obvious as you read it … but by then I was somewhere above myself watching the whole scene take place.
The ER at Valley would be the last time I would allow myself to be that distant-floating-person-removed-from-the situation … watching myself from above as if I was in someone else’s nightmare. Soon she would be gone and I wouldn’t allow her or anyone else to treat this – our life – as a nightmare of any kind. But for now – there I was – floating above it all for briefest moments of time which somehow also seemed like eternity.
I remember the docs asking about family history and I remember calling Mom. I remember what the phone looked like and felt like in my hands. I do not remember what questions they wanted me to ask her or what questions I did. I remember there was a point my brother had been pale in high school. I remembered the school picture of him during that year as I hung up the phone.
I remember having to have diarrhea more than once. I remember exactly what the bathroom looked like. More than anything I remember thinking “What the hell is WRONG with me – Mothers aren’t supposed be to be in the bathroom while all hell is breaking loose with their child! What the HELL is wrong with me? Get me out of this bathroom!!!!” I remember thinking how happy I was that the bathroom was 2 feet from his bed. Of course I didn’t really understand that my body was in shock. Not shock like we throw the word around in the world … like oh – she was in shock to be in this situation … but real medical shock – where your body just starts to shut down. It didn’t ofcourse. Not completely.
I remember the paediatrician on-call arriving and sitting in front of me. He sat at the end of the bed in a chair. I remember him having bloodwork in his hand. I don’t remember looking at it at all. I’m sure I did. This fact surprises me so much that I don’t remember. Cancer moms analyze blood work like we have a degree in it. It fascinates me now that I don’t remember looking at it. I remember him saying the word leukemia but would not diagnose it. I don’t remember what I asked or what I said. I don’t remember where Craig was physically. To my left? I remember the Doctor giving me his card for when we returned for treatment.
I remember being told we were heading directly to the IWK and Mark would need a transfusion as soon as we arrived. I remember being told we would go in an ambulance and I remember Mark being out on the stretcher. He slept the whole time they transferred him. Again … maybe he can sleep through the whole thing …
He actually did sleep through the entire ambulance ride.
I went in the ambulance with him and Craig followed it in the truck. Or van I guess. Or something. I remember worrying about Craig driving by himself. Craig never thinks anything can go wrong. I remember thinking if he would be ok. I remember being worried about him.
The ambulance drive was surreal – ofcourse – but the whole night had been surreal. I had to sit either backwards or sideways in the ambulance and this made me so very motion sick. And I remember thinking – once again – “Get with the program lady!” Again – some of it was probably shock – but I do get motion sick in general. Either way – didn’t want to be thinking about motion sickness at the time.
I remember saying over and over again … please let him be ok – please don’t let it be cancer. I remember rooting for it to be haemophilia. I really had no idea even what that was – but knew it had to do with the blood just like leukemia, and well – to me it sounded better than cancer. So I remember sitting in the ambulance with an annoying ambulance attendant hoping for haemophilia.
And boy DO I remember the ambulance attendant who sat with me. He talked incessantly. Looking back I’m sure it was his job to do so … to help ensure I didn’t go into shock. But my god – shut up already. Do you not see what is happening to us … SHUT UP!!! Then I remember him saying that Mark was very sick. I remember hating him for this. For saying that. At the time I truly remember a visceral hate. It makes little sense I know. But I remember that. Since then Mark and I have been in dire enough circumstances to have to be taken via the ambulance two other times and I have great respect and admiration for all that EMTs are and what they do. But that night I’m embarrassed to say that I did not.
I don’t remember entering the IWK and I don’t remember getting to the room. I do remember the room was HUGE. Like an entire freakin ward huge. We had it all to ourselves. I do remember it was about 2 a.m. And I remember the transfusion. His first transfusion. His first of … countless. No – honestly countless. His first of so many that soon it becomes ‘normal’ for Mark and no one calls to find out how it went … as if someone else’s blood products aren’t being pushed through your son’s body. As if there are no risks and as if he wouldn’t die if he didn’t get them. Soon it will just be another day. But this wasn’t soon. It was now.
I don’t remember them getting a line into him and I don’t remember him crying when they did so. You would think I would remember that.
I remember Mark was asleep and so was Craig. I remember the nurse. Platelets were the transfusion he needed and platelets have to be “pushed” through a very large syringe. So you don’t just get hooked up to a pole and let a bag drip down into your arm. A nurse sits there and literally fills her syringe from a bag of platelets and pushes them into my sons arm. Very slowly. It’s a process. I remember there were 4 bags (I would learn this to be a common number of bags for Mark) I remember thinking “Oh – they’re yellowish color – not red.”
I remember he had a fever and they were very, very concerned about that. I was so confused. I remember thinking they don’t seem that concerned about the possible leukemia … but they are up in arms about this little fever. I remember asking about that. I don’t remember their answer. I think it must have been vague. Little did I know I would spend the next 5 years fearing fevers – living and dying by a thermometers reading and a little something called febrile neutropenia that could take my sons life.
And I remember the nurse. She was my first experience with a little thing called hope. But not in the way you may think. We talked and she told me a story of how a boy came in a while back with similar symptoms and it ended up he didn’t have anything too serious … that he just had to wear a helmet for awhile. A helmet. I know now ofcourse that wasn’t really hope. It was false hope (later I would call this something else). I knew that then too. I really did. But I clung to the Helmut Story. And I remember at 3 a.m., sitting in the one hospital that every parent dreads … and I was thankful for that nurse and for her story. It was what I remember thinking about as I tried to fall asleep on the night … that had become morning … where everything in our lives had changed forever and there was never any going back.