I dont like to tell people this....
But I'm going to because I find blogging to be therapeutic. It's a much needed outlet. It's a safe place. A place where I can be honest. Perhaps because I have yet to let anyone in, never given out the url. I find I can easily write about how I feel and it doesnt burden anyone. I dont need to censor my reality to ensure others are comfortable. So in this post I wont. And if you're not able to handle it....well tough, because I'm not given a choice. So here goes, I'm going to tell you.
In the past few months chemo has become awful. I hate going, and it is by far the worst part of my day, if not week. I dread it, and often find myself already anxious on a Thursday night, with my anxiety increasing exponentially by the time I arrive at SickKids Friday morning. I bought a homeopathic anxiety reliever with the intention of giving it to Evelyn to ease her nerves before access....and often find myself wondering if it would do me any good to sneak some myself.
I guess to be fair, the real source of my anxiety is the port access, and not the actual chemo. For those unsure of what I'm talking about I'll refresh your memory. A port is a small device that was inserted into Evie's chest. It facilitates any IV medications she needs by having a needle inserted into the port, and then the meds run through the tubing directly into her bloodstream. It is helpful when you need to have longterm IV drugs. In order for her port to be accessed, we need to first freeze the area, so that she doesnt actually feel the needle. For that we use an EMLA patch, which we put on at home before we pack up. There was a time, maybe 7 or 8 months ago when Evie would find the EMLA patches in my medical bag and place them on her chest. She also used to help the nurses take them off. They are sticky like a bandaid, but she never minded the pulling off part. Now she pulls away. As soon as I tell her we need to put on her patch, she turns and cries. She holds her shirt down, stiffens her arms down her side so I cant even get her shirt off. Once I manage to get it in place, I need to re-cloth her, suit her up in outside gear so she forgets about it and doesnt try to remove it.
Once we're there she has forgotten all about the patch, and we're seemingly in the clear. At least until it comes time to take it off. This is where it gets awful. She knows as soon as I try and take her shirt off. Now she desperatly wants to keep it on. Her arms re-stiffen, and she starts to cry (again). It gets worse as soon as she sees the nurse. Decked out in her bright blue coveralls, we both put our masks on and take a breath. They have learned. We all know what to expect.
I remember what it was like before. It was easy. I used to tell people, "It's really not that bad". And I wasnt lying. I used to sit with a tiny little baby on my lap, I would hold her hands in my hands, as she would gently lean back on me and watch as the nurse sterilized her port area (twice), and would then quickly jab the butterfly like needle into her port. It really doesnt take very long. Once inserted, the outer tubing is connected to the IV line, and depending on the week (that I have dubbed "short" or "long"), they take blood and administer her medication. These days the few minutes it takes seem like hours. I still sit with her on my lap, but the once tiny little baby is now a full on toddler, all arms and legs hanging over the side of me. Instead of quietly watching the nurse she makes her discomfort, her disapproval, her frustration, her anger, her fear known....quite loudly. Instead of holding hands, I am using all of my strength to hold her down. As she sits on my lap, I cross my right leg over her little legs to firmly hold them down. I wrap my left arm around her chest in an attempt to hold down her arms and keep them from smacking her nurses and pulling out her line. I use my right hand to hold her head against my chest, looking off to one side. The goal is that I will be able to hold her firmly in place long enough for the nurse to get her accessed and either hooked up to her IV or get her medication in and the needle back out again.
That is the goal, but we dont always get there easily. Evie doesnt make it easy, and has a way of finding the strength to rival mine. She will arche her back at the wrong (or right?) time. She can move her little limbs quickly making it hazardous for anyone closeby. I personally have been smacked, kicked and headbutted. The nurses....well, they get their fair share as well.
As if having to hold her down wasnt bad enough, I have to listen to her cry, and scream, and eventually tire herself out, but still cry. Her face is red and she looks tired. I wonder what she is thinking. Her skin is clammy, and she looks at me with sadness in her eyes. I so badly want her to know that I would do anything to make it better, but that I need to let this happen. I'm worried she doesnt know. I'm worried that she is looking at me, confused and frustrated, and as upset with me as she is with the needle itself. She must be scared. Why isnt my Mama helping me? Why is she standing there, idle.
Kids are not rational people. Kids are anything but. They experience emotions quickly. They are instantly happy, or sad, angry, or excited. It sweeps over them like a tidal wave. They dont use what adults call common sense. They expect to be rewarded first, not second. They dont understand why they need to brush their teeth or make their bed, even if they do it every single day. They are selfish. They are unaware. They are unassuming. They live in the here and now. It's hard to remember a time when life was that simple...when I thought only so far ahead as the next activity. Right now my calendar is booked weeks and weeks in the future....this concept is lost on my 7 year old....my 1 year old has absolutley no clue. This gives me comfort, but also makes me upset. Evie knows in the moment that I am doing nothing. I am letting her down. In the long run, and even minutes later, she doesnt remember at all.
The thought of letting her down ever, even for a minute, is heartbreaking. I just want to do right by her. I want her to know that the choices we are making are for her. They are in the moment. We are doing what we need to do right now, to make sure she is here, with us, for a long time to come. I dont know if they are the right choices, but I also know that we dont have many options in front of us. We're doing what we think is best....and that's all any parent can do I guess.
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