Newness & Joy

Disassociating in Home Sense on a Sunday afternoon.

That’s how I knew I’d reached the imaginary marker. Where things were fully 3D and real again after hovering in “surreal” for a solid two weeks. We’ve been home two weeks which seems impossible. We’ve returned once already to BCCH and will return again before this week is over. I’ve thrown myself into completely redoing the house. I keep expecting myself to fall apart and I keep being amazed that I haven’t and then I realize it’s because I’ve ran headlong into a project that’s unrelated to anything medical. But I can’t run forever.

I had a few childless hours the other day, and I tried to fit all of the world of self care into a few measly hours which of course is impossible. I proudly did a puzzle and listened to new music and watched a cozy mystery and jaunted off to do a little shop. I made it two stops in then at Home Sense, the final boss or holy land of stores depending on how you’re feeling on the day— I quite literally hit my limit.

I stood there, a huge line forming at the tills, six dogs inexplicably in the store aisles around me, the vague and annoying din of music pounding in my ears, one meager candle in my hand, the only thing I managed to find, suddenly not worth it. The blended scents of the horrible candle rejects all wafting off my hands and suddenly choking me. I looked around helplessly and realized I have to get out of here.

I put the candle down and high tailed it outta there. Sanitized my hands in the van and sat there now what?

“Now what”? Is certainly the question for this season. What on earth does life look for us now? It’s complex and difficult to drag the big picture into focus. I feel like I’m zoomed in on the wrong parts and can’t adjust the settings to see clearly. I know obviously that I’m glad to be home. All the lovely questions from all the kind people about how happy we must be to be home make my heart sing. I feel like we’re celebrities, or warriors returning from battle. Slaps on the back and cheering and joyful reunions. Teary eyes and happy hearts.

But it’s not only that.

So much of life at home is going to go exactly as it did before. Laundry and dishes and picking up toys. Pine needles tracked in the house. Crushed goldfish crackers in the car seats. Checking the sizes of clothes and boots and seeing friends and family and all the regular family life maintenance.

But so much of it is still unknown. In terms of length of treatment, Mercer is about to enter the longest portion. Maintenance. He’s going to take daily oral chemo meds for over a year. He’s going to need Nanaimo follow ups and routine maintenance for his port. He’s going to need trips to Vancouver about every 3 months. He’s going to need his meds tweaked and adjusted until they’re just right. It’s all going to be new. A new life. Our old life is gone. We didn’t go back.

So it makes sense that our wonderful home, sitting mostly alone and empty for most of a year, would need a little TLC. And it would make sense that I would use that as the perfect springboard to our new life. And it makes sense that we’re all feeling somehow both under and over whelmed. The house has been a welcome distraction… it’s been so good to focus on something other than cancer.

I purged the unused and outgrown and long forgotten things from a home unlived in for ten months. I chased the cobwebs from every corner and set my hand to tasks every single day to keep the anxiety at bay.

We made a homeschool corner, added lamps to keep the seasonal affective disorder at bay, a huge bookshelf to finally have space for our many many books. I purged over half the boys’ toys, most outgrown or missing pieces. Threw away things that no longer served me or reminded me of sadder days. I was ruthless and I culled in a hurry. The boys asked to go back to being in two bedrooms instead of one. They picked a lamp, a plant, and a cushion from IKEA and with the incredible help of my parents we put the twins in a bunk bed with a fun space themed tent on top and Vance into loft bed in his own room with a cozy corner underneath. It was so wonderful to set it up customized and ready for the next season!

Mercer has had next to no side effects from interim maintenance 2 chemos. I’m so grateful to have those delayed intensification transfusions over with! The three week delay for him to get back up where he needed to be helped, I think. He’s had an easier go so far in IM2 than he did in IM1! I’m so happy to see Mercer’s sparkle back in his eye. I started this blog post just before day 21 of IM2, and now I’m sitting back at RMH, having just completed day 31’s chemo: a lumbar puncture and two chemo drips. Mercer is tired but mostly looking and feeling great!

It’s been strange to focus so much on our Nanaimo home, to feel semi-adjusted, and then to return to RMH and see all the same faces. To feel like we never even left. How joyful to be loved and welcomed in two homes. It’s not lost on me how special this all is. How precious and unique and life giving.

So I ruminate and think and stress and reel from the whiplash speed life seems to be going at. I marvel at our little fighter who has grown a whole centimetre and a kilo despite being on harsh meds. I hug my friends on both sides of the ocean. I recoil a little when I am told that the end of maintenance won’t be until spring 2027. When someone asked me today how it is to be moved home… I said “it’s good, just not easy” and I think that might be the truest way to say it.

So sometimes I space out a little when I’m in public because I’m not used to so many people. Sometimes my kids don’t remember what to do or how to be. They play hospital games and when they get hurt at the playground they ask about platelets. Bruises are noticed. Hands are sanitized at every turn. Maintenance is looming on the horizon, an exciting marker of the next thing. But it’s long and it’s different. It’s ferry trips and missing things we’d like to do because we can’t just yet.

We managed to score tickets to the very popular Halloween Train at the forestry museum a few towns over and the boys were delighted. It was outside and not too crowded surprisingly and to go do something “normal” and festive felt like a huge win for team morale. There is so much “not yet” when answering all the dreams of the boys. So a resounding “yes!!” felt like a dream come true.

So as I sit down with snacks and the deep exhaustion that comes from following the wild things as they hurdle through the halls of BCCH and RMH with boisterous confidence and a gaggle of friends, I am grateful. Reflective. Tiiiiired. Homesick? For both homes at once, maybe. It’s hard to pinpoint. There is a lot of in between we seem to be occupying.

I admire the steadfast, adventurous and flexible spirits my boys have. I marvel at how they pivot and adapt over and over. Mercer is an absolute gem. His silly sweet demeanour is still on display. I sit in this room, just as comfortable in the sparse, calm RMH room with pull out beds just as comfortable as I am in our newly reorganized Nanaimo home. It’s finally ready for us. To be lived in. To not just hold our things in wait for us. But to be the stage for this next act.

May the memories that get made be savoured extra tenderly. May the noisy make believe games, the read aloud books, and constant giggles echo down the halls and fill our ears and live permanently in our hearts and memories. May we live in each moment a little longer and richer and slower because we know the fleeting fragility of it all. May we give thanks and be in awe of all that God has carried us through and all the ways in which we’ve been truly loved by those around us, noticing the tiny details stitched together carefully by our Maker. May our uncertainties and sacrifices made turn into opportunities for newness and joy. May the story of our Mercer bless others and bring us all closer to all the goodness and beauty and things that matter most of all 💛