Blaise had a long night last night post his surgical procedures. I saw pain and fear in him, and it broke my heart every time he cried and his belly hurt and he just looked at me. All I could do was hug him and talk to him. It's hard and screwed up to watch a 4 (ish) year old go through this and you are in this spectator role. One thing Andrew and I decided to do was pack his pajamas from home and his play clothes from home. This morning I was so very glad I did this. After a long night I showered him and dressed him in his own clothes from home- and what a difference that made!
This morning, Andrew and I went to oncology home management class. It was a very surreal experience. This is a class that I teach parents, and now I was the parent being taught. This has been a deep struggle for me, to abandon the notion that I am an expert at pediatric oncology care. Although it is hard at times, I am grateful because there is such a risk in assuming you know it all- and as I expected, I learned new things in this class. And I learned them with my husband. I am so grateful that he is with me in this- he helps me focus on Blaise, and reminds me to take care of myself and Lucy at the same time.
Lucy. Where do I begin? Lucy and Blaise are opposites- she's tan, he's pale, she's loud he's quiet, she's defiant he is resigned...it's funny I always enjoyed how different my two kids were, but I am so thankful for it today. Blaise was sad today. It is clear that he understands a little of what is going on and what he does get he does not like- sure, new toys everywhere he turns, unlimited time with Mom and Dad, but- something is up. This is where Lucy comes to the rescue. We hear her down the hallway each day she comes- and she does her previously mentioned "role call"- she calls all of our names (and then her bottle). She is in your face- but he loves her so much and you see that he remembers a glimpse of normalcy when they briefly reunite. This is part of the reason I want to do most of our treatment outpatient- I want these two to have every second they can together, and I want her to yell at him and Blaise to hug her. We can do most of our treatment in the clinic, which means more nights like this.
So, we learned how to take Blaise home today. Then we took the first step into our new life- Blaise received his first doses of chemo. Surprisingly, uneventful. I am sitting at the desk in his room looking over my shoulder hoping he doesn't get sick- an expected side effect. But, Blaise is sleeping. He seems good. My friend Bridget texted me earlier-"First day of chemo is one day closer to being cancer free..." My heart hurts thinking about this long road ahead, but we will be there for him, and we hope that this experience is a blurry memory for him, even though it has changed us forever.
When I was up with Blaise last night sitting with him telling him it was okay, I kept thinking about the poem by e.e. cummings:
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
Back to capitalized letters, I know I cannot take this on for Blaise, but I can carry him and all the
tough stuff with me and we will never let him be alone, because we carry his heart (we carry it in our
hearts).
