Going Home(ish)
This morning, we had to pay for parking. $14.25 for a day pass. For the first time during this treatment, I had to think about how long I was going to be in the clinic. Do I pay $8.00 for a few hours and risk having to come back down and reload? Or just go for the 24-hour full meal deal and risk spending an extra six bucks?
It doesn’t seem like a monumental consideration. But for me, today, it was a metaphor for a whole lot more than pocket change requirements. It represented a major shift in my reality.
For one, I needed to find parking at the hospital. This is something I have not had to do for this entire interval, mainly because we have been living in the hospital or on hospital grounds since May until now. For the past few weeks, we have been living at my brother’s place near Commercial Drive in a suite under his house, commuting to Violet’s appointments and returning to sleep as a family under an actual residential roof.
For another, parking has been free at the hospital for the past year or so due to COVID restrictions and complications. Today marks the first day of a return to payments, which also indicates the beginning of a shift to new protocols.
On the weekend, Violet, Lucy, Matt, my mom and I went to Stanley Park to feed the birds and get some fresh air. The sun was bright and the chickadees landed one after another on the girls’ hands, grateful and full of springtime songs. The buds were out on the trees. And, as they do in Vancouver, they opened the patio for us at Stanley Park Brewing to enjoy a beer in the sunny March afternoon air.
It’s difficult to communicate how foreign these experiences feel at this point, and even strange to recognize myself. I would say that I have felt numb since leaving the hospital from the last transplant, but that’s not entirely accurate. In fact, driving home from BC Children’s last month in the back of my brother’s mustang convertible, soaking up the rays while watching Violet’s smiling face in the sideview mirror of the car, may have been one of the most intense emotional moments of my life. However, feelings are muted and distorted, and the big ones sneak up on me at unexpected times.
Like this morning, paying for parking. It took everything I had not to collapse in hysterics right in front of the meter.
We have entered into yet another stage of this experience, and it has come with its own unique flavor. Violet and I have joined my mom and my dog at my brother’s house, and Matt was able to take a few days off to be with his family for the first time in a long while. It has been cramped, but incredibly rich and satisfying, sleeping all in one room in a slumber party-style configuration – Lucy on a blow-up bed on the floor, grandma on the couch, Ella shifting from Auntie’s bed to Grandma’s bed to Mama’s lap, trying to figure out who her “owner” is these days.
Violet started her radiation treatment last Thursday, after completing the chemotherapy/stem cell transplant portion of this incredibly long treatment plan. In the grand scheme of things, it is the “easy breezy” piece, relatively low on immediate side effects and time in hospital care. For two and a half weeks, Violet will go in Monday to Friday for treatments that last about 5 minutes. Each time she can expect some nausea and skin irritation, but comparatively speaking, nothing to write home about. She takes an anti-nausea pill an hour before. When we arrive, she picks a song to rock out to and lays in the bed nice and still while the radiation does its thing. Then we’re done. So far, she’s had a few queasy episodes at home, but she’s an old pro with nausea at this point. Barf and rally. It’s impressive, to say the least.
So many things are changing, and fast.
Lucy has been approved to start kindergarten with her classmates after Spring Break, which should coincide perfectly with the end of radiation. For a child that has truly blossomed in this context, coining the catch phrase, “Hi, I’m Lucy. Wanna play with me?” with every single child she can get the attention of, it will be an incredible opportunity to be in a classroom. To top it off, she will get to enjoy at least a few weeks under the care and tutelage of the best kindergarten teacher in the world – the same teacher Violet had for two years (it was heartbreaking to think Lucy wouldn’t get the same privilege).
Our amazing tenant has moved out as of March 1st, so Matt has already been home long enough to sleep in our bed and familiarize himself again with the house. It will be an extremely overwhelming project to figure out what goes where and what to do with the new accumulation of “stuff” we are bringing back. But as has been the case throughout this journey, our community continues to overwhelm us with their support and love. Friends have offered to prepare the home for our arrival, surprising the girls with newly decorated rooms, and asking if there is anything needed to make it a welcome, stress-free arrival.
My tears are returning as I write this. To be honest, the emotional upheaval that came on during Violet’s back-to-back transplants sent me into a mental cocoon. It was a survival tactic. There was just too much to process - too thin of a tightrope to walk. Coming out of it felt similar to what I assume Brooks, the old guy, felt like in Shawshank Redemption when released from prison. It felt disorienting and scary, and although I knew it should have been a celebration, among a sea of sensations, the most prevalent feeling was fear.
The protective covering is cracking, and with it, a lot of things are starting to spill out. It’s expected. This is messy emotional business. Not only dealing with a terrifying disease, but living away from your home, your husband, your daughter, your dog, your community, for so long, makes it unsettling to feel so “strange” about the “familiar”. For me – someone who has always felt an unrealistic need to micromanage the emotions of others around me – I have had to come to terms with the fact that I can’t make everything “ok” for everyone. My mom and my husband and the rest of my immediate family has had to compromise all kinds of things for this, and it has had its wear and tear. And there’s nothing I can do about it. Transitions have their own processes, and so do the people in them.
There’s nothing I can do about a lot of things. And that continues to be the lesson in this. Roll with it. Accept what you cannot change. Allow things to unfold as they will. Make the best of it. Welcome things with open arms and an open heart and easy expectations. Appreciate the intricate, incredible way that things come into alignment.
Most significantly right now, I am obsessing about the return home. Mainly because I know you cannot go home again. Not really. Everything is different. WE are different. And on top of it all, we have had to lean so heavily on the generosity and kindness of others that it is very difficult not to feel the weight.
How in the hell do I greet a community of people that have done so much for us while we have been living in this strange, distanced reality? I don’t even know how to talk to people at the grocery store any more, never mind knowing what to say to friends that have given us more than I could ever put into words.
Now that we are going back, I’m starting to think long term. House. School. Work. Matt has taken the plunge, backing off of the job that has broken down his body and soul for years to pursue his business goals. But it’s risky, even if it is necessary. Without me working, and continuing costs from treatments (it goes on and on and on), it is downright terrifying.
And yet, I know it will be alright, because everything is working out. Everything is finding its way to a better version of things. Unknowns are scary, but this has been the color and condition of our life for the past year. We never know what things will be thrown at us. But we can focus on what feels right, and good, and meaningful. We can choose to be a good person. We can opt for gratitude and love and faith. And we can find solace in the knowledge that as things present themselves to us in life, we can do what we can to make the most of those things, for the greatest good.
I’m excited to get back so that we can start anew. We can be with the people we love in the place we adore. We can enjoy our own space again. And, when the right things present themselves to us in the right timing, we can start the process of giving back. Of doing good. Of showing gratitude and easing things for others in the way others have done for us.
Two more weeks and home sweet home, to whatever that will be like, and look like, and feel like. It will be a quick reprieve before returning for the next gruelling round of treatment, but it will be one we will relish, even if we have forgotten how to have a normal conversation. I look forward to awkward talks, of crying through my tears, and finding my way through this fear to the love that’s always underneath.