Love one another

"I give you a new commandment: Love one another as I have loved you"- John 13:34

My whole life I heard this regularly from my Grandma who was living proof of the power of this commandment. Like Jesus she always saw the good in people and truly made them want to be their best selves around her. 

She died two months before Oliver was born and she would have adored his tender heart, his big laugh and his fierce determination. All qualities that she had in abundance, although modestly she would never have seen it that way. 

She built a family unit that was strong and resilient. She supported them and her beloved husband through three brutal battles with his cancer. My grandfather was a warrior. I was just telling Oliver about how he is just like his great grandfather who lost his larynx in his first battle, but overcame that and learned to talk without it. I told Ollie losing his sight is very much like his great grandfather losing his voice, but like his great grandpa, he'll adapt and have an awesome life once we kick cancer out. 

I am thinking about all of this because my dad called me today. We've had some challenges for various reasons over the years trying to keep our relationship strong. Lately it's been hard because he's been so upset about Oliver that he couldn't talk to me. And that made me angry because I have to work through and past my agony every single moment of every day right now. Today he called and I could tell it was hard for him, but he was supportive and we really talked honestly for the first time since Ollie was diagnosed. We talked a lot about how it felt when his dad was sick and how his dad coped. How difficult it was for everyone in his family. How strong his mother was. He retold me the story of his father being upset about using an electrolarnyx to speak after his cancer.

An electrolarynx, is a medical device about the size of a small electric razor used to produce clearer speech by those people who have lost their voicebox, usually due to cancer of the larynx.

My grandfather was misunderstood and ridiculed for using it, and literally threw it out the window. So he learned to talk through a burp. Today Dad told me he remembered sitting at the kitchen table before dinner night after night practicing talking through burps with his dad until he cold hold whole conversations that way. A natural skill for a teenage boy to have and one he could help his dad with. LOL

This story made me smile. Both because of my grandfather's determination and stubbornness and that my dad told me a new part of the story that involved him helping. I think it is very painful for him to remember that time in his childhood, yet we talked about it because it's a level on which we can relate. He openly protested when I told him this, saying it's nothing like going through it with your child and I agreed, but told him that anyone who's been through cancer with someone they lived with and loved dearly can relate on some level and that's what I needed from him. For him to remember what it felt like in order for him to be able to help me with his real empathy. For him to tell me stories of hardship that they all survived and moved past. I was grateful for his call and his honesty today. It helped me a lot. Reminded me that he really comes from the amazingly kind, empathetic parents that he had. That despite his weakness he loves us and did something hard for him today to show it.

All of this is hard, but we have to go through it. No matter what. We can't hide from it or pretend it isn't happening. I take these pictures and write these often difficult posts because I need to. It's an important part of our family's history and I don't want to repress it because it is easier not to remember. I want to use this experience the rest of our lives to remember how lucky we are to know what's really important. To understand what lengths we'll go to for each other because we love one another. Just as Jesus loved and loves all of us.

Ollie had a really good day today. The drugs are already working and if he's still good tomorrow, we're going back to the condo to be "home" as a family for the long weekend. 

Ollie' s oncologists in Ottawa called me today to see how we were and to remind us that they're still here with us, working with the Sick Kids team. They agreed with me that it makes sense for us to stay here for a few weeks as we see whether the meds will do what we need and reopen the possibility of stem cell transplant. If it looks like we need to continue with the meds for significantly longer than the next month for it to make a big difference, we'll look at going back home to Ottawa to be in our own home and community. 

In the meantime, we're the squeaky wheel that will keep reminding Sick Kids that we're here and doing battle to get too transplant and won't give up until we get it. My friend Frank shared a comment on the blog today that while in the Navy he served in a ship where the motto was, "We fight as one." He suggested we use it and I think it's perfect.

So happy Holy Thursday and we wish you all a beautiful and blessed Easter, Vaisakhi, Ramadan, Puthandu or whatever you celebrate (or don't) even if it's not with your extended family or closest friends like usual. We're going to be together wherever we are and be so grateful for every moment and for your ongoing love and support. Love one another (even if it's 6 metres apart or farther).

P.S. - Our boy's smile and laugh are still lighting up the room. He wants to hear cancer survivor stories, especially kids who had it and grow up to have awesome lives after beating it. I told him a few tonight. Please share any you know with us. We're building him up so he knows he can do it, too.