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It’s Christmas Eve 2020.
Wow, what a wild year it has been for us all.
Socio-political unrest. A more tense than usual election. A global pandemic.
While many of you are no doubt lamenting that you are not spending time with family and friends in the normal ways, I myself, have a very bittersweet reminder looking at my Christmas tree.
Two years ago to the date is when we knew that my son had cancer. He was two years old at the time.
It’s about 9:30 am for me right now. Two years ago, about this time, me, my husband and my son were getting in the car to go for another pediatrician appointment. It was a Monday.
I had called my son’s pediatrician in a panic on Sunday, knowing that the holidays were coming and there would be even less support available in my rural community. We had a “diagnosis” it didn’t really fit but I was working with what the doctor and the lab tests had said.
My intention was to get a feeding tube into my son. He was eating about 1-2 tablespoons of cream of wheat a day. He was feverish. I told his pediatrician, how is he going to be able to fight this if he can’t eat. I had also felt the tumor. Though I told myself it must be stool and he was constipated from so much disruption to his normal eating patterns. But, in my heart, I knew.
So we took him to the doctor. They got us in behind the scenes after hours as the two labs in town were closed for outpatients for Christmas Eve. Dr. said we would admit him if we had to, but, that would be a process.
We waited in the pediatricians office, the only family there for over 2 hours. The office was probably closed, but they were waiting for us. It was all shaping up to me knowing that this wasn’t going to be the end of the day.
My son was so sick. He just sat on my lap and cuddled the whole time. He wasn’t even bothered by being stuck there in a room for so long. He didn’t have the strength.
And then our pediatrician came in. I knew from the look on his face that he did not want to be having this conversation with me. He said he had talked to the hematology and oncology specialist at the children’s hospital 3 hours away and they were holding a bed for us. I, of course, broke down.
Our pediatrician said it could wait until the day after Christmas if we wanted. We left in a daze. What do we do? Who do we call? Trembling as I drove towards home, I told my husband, “they don’t hold a bed for you on Christmas Eve if you can really wait two more days.”
We had a dog at home. I didn’t know what to do. We had only been home from 3 weeks in Hawaii (which didn’t go great, with a child who was decompensating physically) for about 2 weeks. While I drove home I called the kennel we had taken our dog to before, hoping they would be open. I said, I don’t know how long we’ll be gone, hopefully a week. They said they had space for Hank.
We came home and packed for a week. I didn’t know what to expect. And, my mind really couldn’t process what was to come in just a few hours. It’s probably better that I hadn’t been told everything. I probably would have been paralyzed if I’d been told to plan for 3 or more months.
With a couple suitcases packed, the dog, and his bed, we turned around and drove back the direction we had just come. We dropped the dog at the kennel and kept on driving to Portland, OR three and a half hours from home.
We unplugged the Christmas Tree. And there it sat, presents underneath, dropping its needles for a month. With no one to keep the wood stove going, the tree stayed in remarkable condition in our 43 degree house while we were gone.
And that’s how our lives changed forever.
That’s the day. That’s how it happened.
That’s how we packed for a week and moved away for over a year.
I can’t even begin to go in to the ups and downs and what happened in between.
You sometimes wonder how things happen like with refugees. This is how. They just move forward not ever quite expecting the degree of upheaval, I suppose.
And then, here you are, two years later looking back at it all, like a terrible dream.
I’m sitting on the same couch. Looking at the same ornaments.
It’s joyful, but somber.
I’m not going to recount what life has been like. There’s plenty in the blog if you want to read more. Check my topics, under “family and health” and then cancer.
I share this story, because for me, it is important to mark this milestone. My son is alive. I have my home. We are better financially than we were two years ago despite it all.
I’m not really one to celebrate milestones. I’m a bad gift giver. I don’t celebrate my own birthday. I sent out about 8 Christmas cards this year.
For those who have followed, helped, and supported us these last two years. Thank you. I’m sorry I’m not great about Thank Yous. Please know how important your supports have been in helping me maintain and get through this all.
I’m not sure if it’s a good thing or a bad thing that this, most (terribly) momentous moment in my life is tied to a day that is steeped in so much love.
Would I feel the need to reflect so deeply if it was just a Tuesday in June? Probably not. We certainly don’t think about the various milestones that my son has crossed. I can’t tell you the day he got his first chemotherapy or his last. I only know the month he began his bone marrow transplant process. None of the days standout in my memory. I don’t even remember when he finished his last inpatient therapy, except it was in January 2020, almost a year ago.
This day, Christmas Eve, is the anniversary that marks my mind.
The one I never wanted to have, but the one we were dealt nevertheless. A Christmas tree will always remind me of sitting on my couch for the month of December in 2018 with a feverish half sleeping two year old on my lap, while I tried to blog, hoping I could find a way to earn some money while I was out of work. And, maybe, a way to spend as much time with him and not go back to my regular job.
That’s still a hope. I’m still hoping that day comes. We’re closer than ever. I looked at the end of year finances and realized that if I had continued to work full time… and none of this had happened… I would probably have been financially independent, by my definition, in two more years or less.
Now, it’s a goal I’m less concerned with. I’m still hoping to make it happen by 40 years old. Even that is a feat, I know. But, it still sucks to look back on possibilities and see what things might have been.
Something else strange has happened in all this process. My life has, truly, become all about my son. Yes, I know, that is what happens for parents, and mothers in particular. But, I’ve lost myself at times. I’m not complaining, more and more I look at life as the journey, not the destination.
But it is funny when I sit down and write these things. And I think more about the things I have NOT accomplished than the things that I did. I find it harder to celebrate myself, to brag, than I did before my son got sick. None of my accomplishments mean that much when faced with losing him.
Somewhere in the process of my own reckoning with his illness, I lost much of the drive for my own success that previously existed. How can you care about those things when your only hope is to keep someone you love alive?
And then, when against the odds, they do live (so far, yes, morbid, but we do still think in these terms) can you regain those drives?
And this is the strange mental space I find myself in these days. Now that I feel I can reach for more again, do I want to? Do I still have career aspirations, or are these just remnants of my previous self? I think I do, but, then I find myself unwilling to commit. I have everything I need and want… so why do I push for more?
In that statement, I find a metaphor for everyone who might be reading this.
Life will begin to normalize for us all again soon. This pandemic, now underway for nearly a year, has a vaccine to turn the tide. In these quieter days of reflection at home with your family, do you have everything you need?
When the time comes that you can go back to pushing for more, will you?
On that note, my son is up. He is laying on my chest while I continue to type to finish this end of year post.
Today I will try to keep my mind tuned into home. We will make two kinds of cookies. Bird seed and peanut butter covered pine cones for the birds. We put our Bing Crosby holiday station on Pandora and do our work and drink hot cacao.
Knowing that this day holds so much power in my mind I will work to stay focused on this small person I have with me. This child who is my all. The reason I do not need a Christmas gift. He is with me and that is more than enough.