I keep telling myself that whatever it is, I’ll keep moving forward, I like to think it helps. I know this battle is nowhere near finished. And I know that despite things being good right now, it’ll only get harder in the future. I am so happy and excited for every day that I’m here to spend with my girls and to do the things I love. I try not to plan too far ahead but in light of the good news I’ve gotten carried away and I’m already thinking about what I want to do in September. It’s a fine line to walk, trying to balance the optimism of being here for a long time and realistic point of view that things can change in a heartbeat. At the risk of sounding like a doomsdayer, I think if I have learnt anything from this diagnosis it’s that we must push ourselves to live as in the moment as possible, be as present as we can be and treat our lives like tomorrow isn’t guaranteed, because it isn’t. I struggle with whether or not I want time to speed up or freeze in place, Sadie is already seven months old and it feels like she just came in to our lives yesterday. On one hand, the faster time seems to move, the more I get to see and experience with my girls and on the same hand the faster time goes, the more likely it is for something to change inside of me. My next scan results could show growth again and the need to try a new treatment or they could show more reduction and buy me some more time to spend with my girls.
The other morning Rach had taken Sadie out before I was up and Riley woke up and walked into our room. My hand was hanging off the bed and she took it in hers and gave it a kiss and asked me to wake up. I opened my eyes slowly to see her big saucers staring back at me. I rubbed the sleep from my eyes and stretched as she repeated “daddy is it wake up time?”. I thought, is there anything more beautiful than this moment? And then I thought about her doing the same thing to my lifeless body and me not being able to wake up and look into her eyes. I wonder if a healthy person has those thoughts? I know I never thought like that before I was diagnosed. I wonder how it’s changed me and I’m sad I’ll never know. I’ll never know what healthy me would have done or thought in any given situation. I’ll never be healthy again. In one of my first posts about my diagnosis I had written that this is the last chapter of my life, that this sickness will be woven into every moment and it is. I don’t think think I realized just how true that statement is or how long or short this chapter may end up being.
I look at other families and I’m jealous that they don’t have to ask these questions. We met a family on our way down south who are the same age as us and with two children the same age as Riley and Sadie. We spoke on the plane about everything that we have in common, and there were obviously a lot of things but one thing we couldn’t connect on was the fragility of life. I envied them for that, their only worries being the fact that the kids aren’t sleeping on the plane. My worries being will I get a blood clot and die while on the plane. Riley and their son played while the two little ones cried, fed and slept. I try to remind myself to always enjoy the moments, especially the difficult ones but the pressure to enjoy every moment is too much sometimes and when I get annoyed at anything I just feel guilty about it, it’s something that no one can possibly understand without being in a position where you don’t know if you’ll live long enough to miss hearing your baby cry. So you have to enjoy it no matter how bad your head hurts or how tired you are you have to smile when your two year old undoes all the laundry you just folded because she had to make it flat. I have to enjoy these things that would normally upset someone because my tomorrow isn’t guaranteed and as hard as it is sometimes, I’m grateful for that reminder.
Riley turned three this week and I’m trying not to be scared about it. She’s grown so much and I’ve been so lucky to get to watch and be a part of that growth, Rach and I had so many plans for our lives and our family, things that we spoke about when we first met back in two thousand and nine. To think that so much of that future planning and fantasy building goes out the window because of this stupid diagnosis just breaks my heart and hers. How is anyone supposed to be okay with a diagnosis like this? Especially at such a young age, it’s hard not to feel like your life has been stolen from you and like your being stolen from your life. I’m thirty four, if I live as long as my dad did, I’d have at least another thirty three years and imagine all I could accomplish in that time, I’d have more children, get another dog, travel again and see new places. I’d see birthdays and graduations, perhaps even see my daughters get married and meet my grandchildren. I’m sorry if this sounds like a previous post but this is how I feel. I won’t get any of that and theres so many people who don’t appreciate the fact that they will. I have to live like I’ll die tomorrow and I want to live like I will because it forces that smile in the hard moments, it forces appreciation for things that would otherwise go unnoticed and I think thats beautiful and tragic all at the same time. We don’t control any of this yet we spend our lives pretending we do. I’ve said before that theres a post funeral glow that we all have that eventually fades, sadly and beautifully, mine doesn’t get to fade as yours does. I don’t know if this is nerves because of my upcoming scan or just the fact that I’m dying at an alarming rate but you should know that I remind myself of all of this a thousand times a day and I feel like you should to. It was Rileys third birthday yesterday and it’s supposed to feel like this big momentous occasion, but it doesn’t. I think when you’re forced to live like every day could be your last, you realize that theres no difference between a birthday and any other day because they’re both just as special. It took me some time to realize this because at first it felt like I didn’t care as much as I should about the day and I felt bad about that but as I thought about it more, I realized it’s that I care just as much about this day as I do about any other day. Every day is like a birthday for me, I’m profoundly grateful to be here to watch Riley grow and be a part of the growth every single day. I love watching as her huge eyes dart around and absorb the light of the world, I love watching as her smile widens and she figures something out. I love hearing her question absolutely everything or laugh hysterically as we play. These tiny moments that pass in fractions of a second are just as big and important to me as the big moments that last all day. It may seem like things would lose their value if everything has the same amount of importance but like listening to your favourite album over and over again, you always seem to find more things to love about it. And now in some tragically beautiful roundabout way, my life has become like my favourite album because I’m constantly discovering more ways to love it. Last year on Rileys second birthday, I was in deep with chemo, I was in such a fog, still reeling from my diagnosis and being beaten by chemo, I feel like I wasn’t even there, I couldn’t even comprehend the magnitude of the moment. This year Im here and feel good and I’m enjoying every second of it but the thought lingers, “will I be here next year?”. And I can’t escape that, thats my reality now and thats okay. Ive said a thousand times and I’ll say it again, I’m grateful for the life I’ve had, I’ve lived an incredible thirty four years full of adventure and love and not everyone gets that. So as sad as this all this, if I died tomorrow, I would die knowing that I’ve lived a wonderful life. It seems a morbid way to end this post but I mean it in the best way possible. live like you’re going to die tomorrow, because you might.
2 thoughts on “Thinking out loud”
beautifully written …. your attitude is amazing given the situation that you are in … Dad would be and was very proud of you … Love you Uncle Bernie
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May you be cleared, cleansed, requalified and restored to your natural state of purity and perfection. (My prayer for you. ) So very happy to hear you are doing well. Keep it up! I love you and thank you for sharing your hard-won wisdom. Life is a wonder, rich mystery and yours is perfect.
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