Archive of ‘painful days’ category

I love you, Dad.

Life begins with a promise. It is promised, when you are born, that one day you will die. You might spend 20 minutes on Earth, or revolve around the sun 60 years, or tomorrow, or 3 weeks from now. I guess in order to keep living, we pretend this isn’t true, like when you’re rereading a great book and try not to think about the ending you know is coming, so it won’t spoil the journey. There feels like there is always another tomorrow, and one after that, and the one after that…on and on unto the end of your imagination.

I became aware I was a mortal at a very young age. I was diagnosed with a genetic condition which predisposes me to tumors when I was 3 (that’s when I first remember it being explained to me). I became aware that tomorrow wasn’t promised. That there was only one promise the planet had yet to keep; that I would die. That we would all die. The first promise, my birth, had been fulfilled, and every moment was a gift. I lived every day after that with the intention of filling every second of existence with an infinite infinity of moments, memories, love.

It was easy. It was impossible. I failed. I succeed. I tried, though, and that’s the most important part. I try.

I tell my parents I love them, and hug and kiss them every night. I say goodnight, as though this might be the end of the Earth’s promise. That the tomorrow which is just dreams away might not be waiting for me. That tomorrow might move on without one of us. I’ve never told them that when I said “goodnight” and “je t’aime”, I was really whispering in my heart “goodbye”. I never wished to say a last goodbye.

So I am not wishing my father goodnight. Or goodbye. I am whispering to him with every breath we breathe together in our existence that I love him. And those are the words that have always meant everything and encompassed all.

I can’t even bring myself to type the word. That word. The word that is so final, so absolute, that once I type it, I won’t be able to see from the tears that roll down my chin. I’m not ready for a salt-stained keyboard. So I won’t. My father is taking a journey, a journey to a somewhere, a somewhere neither of us understands. He has stage 4 lymphoma. 2 weeks ago he was flummoxing me at Scrabble with his funny made-up words, eating dinner together, teasing me about how much onions I put in everything, walking, buying groceries, reading, snuggling with me. He was doing the ordinary things that make every moment extraordinary, and make up our infinity. He also went profoundly deaf, a side effect of the chemo. So we were also playing like the worst, most hysterical version of “Telephone” the planet has ever seen. So much was lost in translation, in deafness, but the love was not. Last week, we think he blacked out or his heart stopped, causing him to have a car crash (no one was hurt. not even him.). He went to ER, where he seemed alright, if a little confused and “odd”. But something as “off”. They admitted him, and he went downhill so quickly. He got a pacemaker, to combat the effects of the chemo, which were finally rearing their ugly head. After the surgery, he was very tired. A kind of tired which frightened me. Dad would wake up for a few minutes, maybe eat a little something, smile at me or say a little something, and then sleep again. Today he did that less. He is slowly walking away from me and I cannot catch up.

I’ve spent the past few days bawling at inopportune times, and wetting my dad’s pillow with tears (sorry-not-sorry). I need to make these moments even more infinitely infinite than they always have been. Because I need to store them in my heart.

I do not know how much time he has left with us. I never have. It is an unknowable thing, and we are blessed with this ignorance. Because the knowing would break us. It is breaking me. Cancer is terrifying because it makes you see the final promise looming ever-nearer.

He once told me he never imagined having children, but that he couldn’t imagine his life without me. <3

There is never enough time to be with the ones you love. A thousand lifetimes and the last “I love you’s” would still break my soul. I am so grateful for being a part of my Dad’s incredible journey on Earth.

And feel deep gratitude and love for all possible moments we’ve shared together, past, present and future <3.


I Heard the Bells…

Happy Christmas everyone!!

Christmas was nice, the quiet kind, but in a way that was rather comforting. We didn’t do anything special, but of course the dinner was magnificent! All of my favourites (stuffing or dressing, depending where you live ;P) and of course homemade cranberry sauce!!

I felt just awful during the day. It seems that whenever the chance arrives that there could be a good day, the Lyme stamps it out quite effectively. It is cruel, although I know the bacteria doesn’t really check a calendar.

I did, however have a fun time playing some classic christmas songs from my monster christmas book, which I absolutely love! All those familiar songs are easy enough to play too, so there isn’t much thinking involved. There is something wonderful about traditions; they wrap you up in a wonderful warmth and fill you with a feeling of belonging.

Some of the best presents I’ve ever received, however, aren’t the kind that came in beautiful boxes and bows under a tree. The most cherished gift I have ever received are intangible. Is there anything quite as wonderful or perfect as love? If there is anything more important or beloved than a friendship, what is it? Could there be anything more precious than compassion, more blessed than a smile, more valued than a kind word? Is there anything that could be more special than this, all, every, moment?

But of course, none there are.


Its cold here today ,but clear, and if you didn’t look at a calendar, you might just think it spring, not summer. But of course I looked at a calendar, just to make sure my guess was correct. Sometimes I worry that I won’t realize time has passed once summer comes again. How will I know that I’ve been away so long? How will I begin to guess that?

Its crazy how different my days can be. Some days I can be sitting on the porch, laughing and drinking tea and a stranger wouldn’t know I was sick. Or some days I can be sitting in a cafe, in my wheelchair, but still, you’d be hard pressed to know what was wrong with me. Some days I can think real clear and some days its hard to talk. Sometimes I the day ends with me lying on the floor of the bathroom, knocked cold from falling and hitting the counter. Days can end with confusion and tears or laughter and pensive thinking. How is it fair that the days can end up so different? I’d rather take an average of the good days and the bad ones and then have okay days for awhile. Its just worse to have something and loose it, you know? But I suppose that one could argue that it is better to live for a day, than never live at all. Its hard to feel so erratically different from one day to the next. Its aggravating, let me tell you.

At least I’m at the lake though. I think there must be something to the logic that when you are surrounded by something so beautiful and clean and fresh, some of that goodness has gotta rub of eventually.

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