A change of scene

Today we are officially moved into the Ronald McDonald House.

Until today, we had been living on the west side of the city in a condo building.

Immediately after Ezra’s diagnosis a family from Grimshaw reached out to us and let us know they had a condo in Edmonton we were welcome to use.

The generosity of this gift meant everything to our family. At a time when we didn’t know what the next week would hold, let alone the next month, we knew we had a safe place to go, to be alone, and work through all that we were feeling.

So, if you are that family and are reading this now – thank you. We won’t ever be able to say thank you enough.

That brings us to today. After nearly four months, it was time to leave the condo. Cody was able to come on his own to Edmonton this weekend and he took home everything but the bare essentials (and now that we are at the Ronald McDonald House, I am seeing he could have taken even more with him). Cody drove with us over to the house, where COVID protocols meant he couldn’t go past the front door, and Ezra and I then moved into our new home-away-from-home.

With Cody in Edmonton we took the chance to see Santa in Leduc

While there are many perks to being here, like delicious dinners provided for us daily, several family-room-like common areas where we can relax or visit with other families, and just a five minute drive to the hospital. There’s also a lot to get used to like shared kitchen spaces, a tiny dorm-like room, and needing to wear masks everywhere except in our own room.

I am sure with new routines we will make the necessary adjustment, but tonight it just feels like a lot.

There are so many unknowns in this journey we are on, and while I was prepared to leave the condo, it has truly caught me off guard to be feeling so sad about this change in accommodation. The condo felt like a home, as much as it could. This place feels…different.

As for Ezra, he’s been okay. These last couple of weeks of chemo have proven hard on his blood counts and he has required two blood transfusions and one platelet transfusion in the last two weeks. He’s not eating well and complaining of stomach aches, other body aches and headaches.

But, tomorrow marks our last day of chemo for this treatment cycle. Then, on Friday he has blood work that will determine how quickly we can jump into the next cycle.

Earlier today, Ezra did get to play with another little boy at the Ronald McDonald House and that was so special to watch. Ezra is a social kid, and more than anything, he has missed being around other kids.

In clinic last week there was another boy, about his age, sitting in the chair across from him. Ezra must have talked with him when I was in the bathroom because he told me he got to talk with “the kid with the big boots.”

Names are unimportant to Ezra 😉

The two boys talked a bit more before we left, and bonded over their mutual enjoyment of the Nintendo Switch. Then, on our way out of the hospital Ezra, very casually, said “I think I am making friends, mommy. Isn’t that nice. Even though I can’t go to school, I can still make friends.”

Enter the broken mama’s heart. All Ezra wanted to do all summer long was to go to school because Elijah had told him how great it was. Our circles have always been small and so all of Ezra’s friends to this point have been the children of my friends. Most of those children are either girls, or boys closer to Elijah’s age. These friends have been great friends, but I know it’s important for him to make and choose some of his own friends too.

This was supposed to be his year. And even though this makes me sad, I am grateful that Ezra is able to adapt easily to where life has brought him. I am grateful he’s satisfied with 30 minute conversations with kids he may not see again.

We have been on this journey for 114 days, all but nine of which have been in Edmonton. We are hopeful that we will be able to spend a week at home after this week, but that will only happen if Ezra doesn’t make counts on Friday.

Into this week we would appreciate prayers for this adjustment to a new place to stay for Ezra and I. Continued prayers are also appreciated for all of us as the prolonged separation is becoming harder and harder to endure for all members of our family. We have done four months, and are looking at another four months before we can be home more than we are away. We also have some decisions to make where we are finding ourselves needing to absolutely trust God with our finances.

There’s nothing easy about this journey. Every time we feel like we know what to expect, something else happens, or we are faced with another decision, another change, another expense.

So, once again thank you to everyone who is helping to hold us all up. We truly couldn’t do this without you.

Processing grief

Grief isn’t something I am familiar with.

Grief isn’t something I am comfortable with.

When Ezra was first diagnosed I cried. I cried a lot.

Before Ezra was diagnosed, my closest friends knew that I didn’t cry, at least not over sad things. Generally, if I cried it was when people accomplished things. For example, while watching a movie, if the main character overcame adversity and achieved their goal, tears. If the main character dies, no tears. This quality both made Cody laugh, and drove him nuts.

I have even teared up photographing events in the community when kids have obviously done their very best and are proud of themselves. This is usually when I am grateful the camera is in front of my face and the other event attendees can’t see my eyes well up with tears of pride for kids that aren’t even mine.

Now, I cry when a friend sends me an encouraging song, a well-timed message, or when I think too much about being away from my other boys.

For the first six weeks I just didn’t wear mascara. There was no point. I could never guarantee that someone wasn’t going to pop in on Ezra’s appointment to talk about how things were going.

There was no guarantee that talking about that wasn’t going to make me cry.

After the initial shock I then started to feel like I had a better handle on things. But, if I was being honest, that’s because I didn’t feel much of anything. We went to the appointments, we went home. We went for walks if Ezra was feeling well enough, we stayed at the condo if he wasn’t. That’s how life was.

In more recent weeks I started feeling angry. I was angry that this is what my life looks like now. I was angry that just as Cody and I were feeling like we were getting ahead, our child was diagnosed with cancer, and all of our plans were immediately put on hold.

I was angry that the dreams I had for the future suddenly felt unattainable.

When I first felt those stings of anger, I don’t think I recognized those feelings as grief.

One day, earlier this month, Ezra’s oncologist took one look at me, asked me how I was, and then said she would ask the social worker to come see me.

“I’m reading between the lines. You need to talk to someone,” she said.

Ten minutes later the social worker rounded the corner and sat with me while I cried and told her how angry I was. She told me that what she was hearing was that I really just needed some respite. Some time to be me. Some time away from Ezra.

She also told me it was okay for this to have changed me, and to continue to change me. Being told that I didn’t need to fight so hard against the changes I was feeling inside my own heart and head felt both obvious and freeing. It felt like someone had given me permission to change.

Later that same day a friend came to visit for a couple of hours in the evening, after Ezra was asleep. It was exactly what I needed.

A few days later, I saw a Facebook post from Ann Voskamp that served as a good reminder: “Faith in Christ doesn’t guarantee we won’t suffer. Instead it offers an opportunity that when you suffer you can become more like Christ.”

What a powerful reminder. Christ was perfect and yet, he still suffered. He screamed out in pain, He asked God to take His suffering from Him.

It’s oddly comforting to know that in my own pain, in my own moments of complete brokenness, I have an opportunity to become more like Christ.

After having another opportunity to go to Grimshaw for four days, I am no longer feeling so angry. The tears aren’t overwhelming me quite so often, and I am more quickly remembering to lean deeper into trusting that God has a plan for our lives.

A few weeks ago a friend shared with me a vision she had for her own life, years ago. A vision that was well-suited to my own life now.

The vision included an image of a stained glass windows.

“The pretty, coloured pieces only make sense with the dark, black lead.

“Your current season is just God’s time to shape the lead to fit the future colour.”

I am frequently finding myself blessed by this friend’s gentle wisdom and so grateful God put her into our lives in a more prominent way right before this all happened.

Even this friendship shows me how God was showing up for me, well before I knew the hardships that were coming.

So, while knowing all this does not make this process of grief any less painful or uncomfortable, I do know there is hope.

And, most of the time, that promise of hope is just enough to soothe the tidal waves of grief.

Three months

Can you believe we have already lived this new life for three months?

For me, it seems like the time we have spent in Edmonton has flown by. But, it also feels like we have been doing this forever. It’s strange how quickly something completely not normal begins to feel normal.

For example, Ezra used to get upset if, while at the hospital, I said “time to head home.”

He would correct me and say, “No, mom. It’s time to go to the condo, our home is in Grimshaw.”

However, within the last couple of weeks he started calling our Grimshaw home his “old home” and the condo his “new home.” This acceptance of his current situation was both a comfort to me, and a source of sorrow. In his five-year-old brain, three months was long enough for him to figure we had permanently said goodbye to life in Grimshaw.

For that reason alone, last week provided the respite and encouragement we all needed.

I last left you with an update saying Ezra’s treatment was delayed one week. When I learned we would have another week free of the hospital I made sure to ask our outpatient nurse if it was reasonable that we travelled to Grimshaw.

After making sure we knew exactly what to do, who to call, and where to go, if Ezra spiked a fever, we were cut loose from the tether confining us to the city limits.

We had five wonderful days in Grimshaw. On our first evening together Elijah commented on how nice it was to have everyone around the same dinner table.

Elliott pulled this face in nearly all the photos we tried to take while together in Grimshaw.

Elliott had a bit of a cough so we initially kept him and Ezra separated, as much as possible. At one point Ezra told me we needed to come home again another time so that he could snuggle his baby brother, because “I just love him so much.”

By day three Elliott was so much better, Ezra stayed fever free, and everyone was able to snuggle.

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Saying goodbye on Sunday was hard, everyone was a little glum that day. Thank goodness for the fun of Trick or Treating. All of our days were ended on a high note as all three boys had bags full of candy.

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I think the best way to describe how we are all doing right now is to say we are weary, we want to be together, and our emotions are all a little raw.

On Monday Ezra was able to restart his treatment plan. The chemo he has received this week is one he did not do very well on at the beginning of this cycle. I was not looking forward to doing it again.

Thankfully, Ezra has had only mild side effects this time around. Tomorrow marks our last day for this chemo, and the next few chemo therapies don’t make him anywhere near as sick or sore.

We have also started to make some progress on homeschool Kindergarten. Ezra is not super pleased about having to learn from home, he really wanted to go to school. Sometimes a medical professional asks what he is doing for school and he replies, with a big pout, “I don’t get to go to school because I have the worst sickness and have to be at the hospital every day!”

These medical professionals then usually try to reassure him he can go to school, which I wish they wouldn’t. The idea that Ezra could go to school this year was the single most misleading thing we were told when he was diagnosed.

In addition to the three months of treatment he just finished and the next four weeks of this cycle, Ezra has another four months of intense and frequent treatments ahead of him before, hopefully, he enters the maintenance phase of his treatment plan. This will bring us to the end of March, early April.

As a family that lives five hours away from the Stollery, there is no possible way Ezra can attend school during these months of frequent treatment.

But thanks to my introduction to homeschooling during the 2020-21 school year, teaching Ezra does not feel as daunting as teaching Elijah did last year. We have games, we have workbooks, we have many physical and electronic resources. We’ve got this.

Going into the rest of the month, we continue to ask for prayers for Ezra’s healing and overall well-being during treatment. Cody continues to appreciate all of the meals that have been generously made for him and the boys so far, and he will never turn down any future meal.