Planning for the Unexpected

While I was in this process of writing my book I received several warnings. There is considerable risk in sharing a very personal story publicly. Parts of your story can be misinterpreted or misconstrued. The reader may disagree with the conclusions I came to. Some may even be critical of my motivation in sharing. Being public comes with a great deal of risk.

On the flip side, there can be many positive and reaffirming experiences. Those who can identify with our story or who went through similar experiences can be encouraged or find a kindred spirit. Over the years I've had many positive experiences sharing our story. However, I know that the detail found in my book would spark many conversations - I have to be prepared for just about every kind of reaction.

There has already been one reaction that has taken completely off guard. In retrospect, I should not have been surprised as this little boy has been surprising me for twelve years. Yesterday, was Russell's birthday and thinking back over the years - this boy has been teaching us so many lessons it shouldn't surprise me that we have many more to learn.

There are parts of Russell and his story that are his to share - and his alone. Many might wonder why I chose to end the book where I did and most of the rationale for that is mostly due to Russell and respecting his privacy. As Russell has grown and has found his own identity there are many parts of his life that are his to share - not me. 

Imagine being a child and having the constant attention of the medical system.  The constant poking, prodding, and examinations. Being a slave to medication day after day - month after month. Your perspective might be more than just a little tainted when it comes to being referred to as a "medical miracle."  

Russell has been a reluctant participant in this whole book-writing process. Both Nicole and Susan read the early drafts of my book. Russell has always been a bigger challenge. Russell does not like talking about his medical past. It has taken years for him to get past his rocky beginning in life. At one point Russell would avoid looking at baby pictures - for fear of seeing one his dreaded hospital pictures. It's been very difficult for us as parents to deal with. We look at Russell as this amazing boy who has beaten the odds on many occasions - Russell does not share that opinion. His perspective is far different than ours. Almost every negative experience is his life has had something to do with his transplant. Something he is still dealing with to this day. The word "transplant" has become a controversial word to him. 

Russell and I have had many talks about his transplant reality and the fact that I was writing a book where he played the central character. When the final draft of the book was complete, I still had to get his blessing to go ahead with publishing. I did get his agreement - but he wasn't exactly thrilled. When I would talk about it I would get the response of "Oh that" and would likely receive an eye-roll.  He tolerated this process but isn't exactly thrilled. I wished that this could be a great experience for him - but it hasn't been and I have to accept that.

Then our boy - who has constantly surprised me - surprised me once again.

When I received the proof copy of my book - I could see Russell was interested. It seemed to be received differently. The book format made it seem more real. He leafed through the book - saw some of the pictures and he seemed to be ok with it. I was a little less anxious at the reaction. Then something quite amazing happened - which requires a bit of explaining. 

Prior to the COVID lockdown, Russell had taken up with a new friend at school.  Russell works with an EA - and due to being short-staffed many of the EAs have to be creative in how they support these kids. Russell's EA decided to bring Russell (who is in Grade 5) to the Kindergarten room to work with a young boy. We'll call him "L."  Not sure what sparked this idea but Russell made an instant connection with "L" and he started spending more time with this boy who has some significant special needs. A big brother - little brother dynamic developed. Russell would wait for him and greet him nearly every morning. I recall Russell talking about "L" a lot at home.  Then COVID hit. With some time spent away from school, we would ask Russell if he missed school. Russell's feelings about school were quite clear. Did he miss school - No - but he did miss "L." We had thought of a few ways of trying to get in touch with "L" through the school but nothing materialized. Then about a week ago Russell spotted "L" in the grocery store. I couldn't contain Russell. He bounded over to see "L" and his Mom. It was a very happy reunion. As we continued shopping Russell harassed me to get "L's" contact information so that they could possibly get together.

As we headed out the store I began loading our groceries into our vehicle - where a box of my books had been placed. I think having a box of your books in the trunk of your car is a requirement of any author. "L" and his mom also exited the store and ended up being parked across the aisle from us. Russell asked if he could go over and say hi.  Seeing my books - Russell asked if he could give a copy to "L" and his mom. I was a little shocked by the question and quickly agreed. Russell dove into the box and grabbed a copy and made his way to "L" and his mom. I could see the exchange but I didn't hear the discussion as I was still unpacking groceries. I made my way over to explain the curious gift that Russell had offered. When I got within earshot I caught part of the discussion. Russell was explaining what the book was about and that it was about him and his transplant. The look of shock on this Mom's face probably matched my own. This was information Russell NEVER shared - with anyone. Then if that wasn't enough. The mom in her disbelief asked "Do you have a transplant?" and with a huge grin, Russell confirmed the question and promptly lifted his shirt. I was flabbergasted. Russell has never - ever shared anything about his transplant and to show the tell-tale chest scar - I wouldn't have believed it if I hadn't seen it for myself. 

This was the first time Russell has ever openly shared about his medical complexity. Ever. It was spontaneous and unscripted.

As Russell and I drove away I asked Russell a couple of questions about the encounter, but I got the message very clearly that I needed to let it go. Russell had already moved on and didn't want to exhaust the issue. Which was totally fine. If it was no big deal to him - why should it be for me?  Although I'm sure I had a big dumb grin on my face the whole way home.

I had been dreading how Russell would handle the release of my book as it would mean many more conversations about his time in hospital. It was really amazing to see him start to embrace the story and add his own spin on it. After all, this is his story - my book only shows the story from my perspective. Russell's version of the story will no doubt be much different than mine. I'm hoping to be able to hear about it - someday.