Living with Leukemia. The other side of the story – part 1 The Girl

As I mentioned in the first posts on this blog, my Husband was diagnosed with Acute Leukemia at the end of last year. On December 24^th 2009 to be precise. That date will be forever imprinted on my mind like a hot brand on a calf’s hide. You may very well object that I am not, in fact, living with leukemia, as I am not, in truth, the one who has it. And you would certainly have a point. The truth, however, is that while my Husband is the one actually sick the rest of us are living with his illness too and though I cannot speak for someone who has this disease I can certainly speak for someone who is experiencing it second hand every day.

When I think back to the time right after the diagnosis it feels almost dreamlike. All my memories are in a sort of haze, and this saddens me to no end, not because I want to remember those first crappy months with HD clarity, but because it all coincided with The Girl’s birth. I can picture every nuance of The Boy’s first milestones, the first time he latched on, the first smile, the first laugh, the first time he held my finger in his tiny fist. Whereas The Girl was only exactly one month old the day her daddy was admitted to the hospital, so for the life of me I can’t remember her first Christmas, her first New Year, her first smile…. I have the pictures, sure, but no memories. And that is so sad. Of course, her father doesn’t have any of these memories either, because he wasn’t there, he was stuck in a hospital room with no visitors (just one a day, usually me), but I was there, I was, and yet I may as well have not been there. It makes me so sad not to remember, it makes me feel so guilty. Although, what I write is not completely true, I don’t remember events, I can’t remember how she looked or what she did, but I do remember feelings.

I remember the feeling of loss every time I had to leave her at home to go visit her dad in the hospital. I so wanted to see him, but I so needed to be with her, so every time I left the house it was a tiny scar on my heart. I remember the wonderful feeling of peace every time I came home to feed her. This is why I kept breastfeeding her, though everyone told me I was crazy, that I was dealing with too much stuff and should save my energy. By nursing her I had to come home from the hospital, I had to hold her and pay attention to her, and love her, all things that would have been too easy to ignore in the general chaos of those first few weeks. She kept me grounded, she kept me sane. I remember the feeling of going to sleep with her in my bed (yes, she slept in my bed, with me, I know it was completely irresponsible of me, but I was alone in my big bed and she was alone in her tiny crib next to me and I needed her there with me) snuggled together, her tiny baby head just a few inches from my nose so I could smell her all night long.

So many people said to me variations of the following: “oh, you poor dear, and with a newborn to tend to, it would have been so much better if you had found out earlier” and my thought, as well as my husband’s was the timing, though terrible, was also perfect. He watched her being born, he got to hold her and love her for a month, and I had my anchor. So tiny, such a blessing.