I don’t want to go

A few weeks ago, Rach and I recalled the words of one of the keynote speakers from our time aboard the Explorer in Antarctica, he said, “The time is now”. Rach and I have always lived by that motto, we took every opportunity to experience as much of life as we could. When I got my diagnosis, that motto became a million times more important to us, our lives and everything we did were amplified to the point where we felt the need to fill every day with as much as we could, which was a hard ask considering how much we already did. Nevertheless, we dialled in on what was important to us and we gave ourselves space and time to make those things happen. While traveling would have been at the top of the list, it wasn’t really an option until recently, so we jumped at the opportunity and booked our first family vacation to Aruba. I was nervous to be so far away from my oncologist and medical team here in Toronto but in my perspective, it was worth the risk, I’m not sure if I’ll ever have the chance to travel with my girls again, so I need to take the risk and make the best of it and that’s exactly what we did. 

This trip was simultaneously the best and the worst thing for me. I’ll start with the good though. I’ve had the most amazing one on one time with Riley, getting to watch her experience so many new things for the first time has been the light of my life. I can’t explain how full it makes my heart that I got to watch her react and respond to so many new situations and things with curiosity, excitement and a little trepidation. She’s grown exponentially over the past two weeks and I couldn’t be more proud of her. Having the alone time with Rach has been really special, its something we desperately needed and we certainly didn’t let it go to waste. Although Sadie is still too little to know what’s going on, having her there with us made the trip extra special, seeing her sleep in the shade on the beach and wake up smiling like a little sunshine in our lives was beautiful in a million ways. What made the trip extra special was that both of our moms came with us. They both got to spend time with Sadie and Riley and make memories that will last a life time.

As beautiful as every moment was, it was all shadowed by my condition and while outwardly I smiled and laughed, inside, I cried and struggled with my reality. I really tried to soak up every moment and be as present as possible. I made a conscious effort to put my phone down and be with Riley whenever she wanted me by her side and I tried as hard as I could not to let her see me cry too much but if she did and she asked why, I would tell it’s because I’m happy to be with her and that was always enough for her. We spent the first few days with my brother and his family and it was the first time that Riley got to play so consistently with her cousins. It made me smile and warmed my heart to see the beginnings of their relationship take shape and to watch how Riley would interact with her cousins and other kids at the hotel. I always wanted to be a fly on the wall when I drop her off at school and this was my chance. I sat back and watched her run wild with the other kids, I watched as she tested her boundaries and I gave her my hand when she needed help. Night after night I would get into bed with Rach and cry because all these beautiful moments, all the times when I’m needed make me feel so special and like the most important person in the world to my girls but knowing I won’t be here and that they will still need me is the most heartbreaking thing I can think of and it truly broke me during this trip. I was consumed with all the things I’ll never do, all the times I won’t be there, all the help I won’t be able to give and it just made me want to do more. So I fought through stomach pain and pushed through exhaustion, I showed up as much as I could for my girls hoping that it would be enough but knowing that it never would be. Knowing that there is never enough, that once I’m gone, whatever I did beforehand won’t be able to compare to that which I won’t be able to do when I’m gone.

Now, like any person, I sit here writing, making photo albums and videos to try and preserve my name and memory so that my essence won’t be lost when Im gone, I’m doing everything I can to create a legacy but is it ever enough? How could it be? How could any amount of writing or pictures replace a helping hand when someone is in need. How could it possibly replace a hug or a shoulder to cry on? It can’t, and this has been my greatest struggle. I’m angry that this is happening because it’s not just happening to me, I’m angry that it’s stage four and I had no warning, I’m angry at how its changed me and at how it will change the people around me. I’m angry that Rach has to go through this, she deserves better and so do my daughters. 

I know I won’t be here forever, but none of us will, so the best we can do is live in the moment, take those risks, laugh and cry with the ones you love and try leave a lasting impression on people because when you’re dead and gone all that will remain is how you made people feel.

2 thoughts on “I don’t want to go

  1. Zaza Adam says:

    Lorne, you give the girls everything you can and you’re committed to being there for as long as you can be there. That’s a lot more than I got from a father who lived to 68. Your girls will know everything about you. I know without asking you’re making that happen. Some of it will come first hand, some of it they’ll learn from photos, videos, the written word and the pretty sizeable group of friends and family you keep close to you. I give you my word, for as long as I’m here, your girls…who mean the world to me & are like my very own, will have me to swoop in if you can’t. They’ll be cared for, protected, loved and helped with anything they may need. They’ll know who you are, they’ll know who you were and they’ll know no one could have loved them more than their dad. I promise. Can we go back talking about you as a live person now?? ❤️

  2. Joseph Rubenstein says:

    Dear Lorne,

    Another exceptionally well written and gut-wrenching post, where your honesty and emotionally accessible sharing makes our connection even closer. And therein lies a cruel rub.

    Since finding out what was going on early this spring, and seeing you and Rach and the kinder face-to-face since then… I’ve prayed and hoped (and still do) for a miracle, and relief for you from pain and discomfort, and for much more time. Like decades and decades.

    You’ve always been so good, almost like an angel. But your place should be here, on earth. It has to be.

    I love you. Forever.

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