Losing My Happy
“I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain…Doubts and distress filled me as I watched her suffer. Sick and exhausted, she lay in bed as the drugs worked their way through her body – her face the chalk white of marble, the only movement coming from pink tears which trickled from the corners of her eyes because the mucous membranes were so fragile that tiny spots of blood had seeped into them.” From: Hannah’s Choice: A daughter’s love for life. The mother who let her make the hardest decision of all.
The above excerpt is from a book I just finished reading. It’s the true story of a girl who refused a heart transplant when she was thirteen because she just wanted to get out of the hospital and be home with her family. She’d had leukemia when she was four (the above excerpt is a description of what the chemo drugs did to her tiny body at that time). She went into remission, but the chemotherapy permanently damaged her heart which weakened over the years until she nearly died at 13 and found herself back in the hospital, desperately sick.
Hannah ultimately got a heart transplant, but she did initially refuse it (her parents honored her wishes) and she got to go home and recover (as much as possible) until she was faced with the choice again two years later.
I probably shouldn’t have read the book. I mean, I definitely shouldn’t have read it but once I started reading, I couldn’t stop. It was deeply moving and often very sad. I recognized so much of our own family’s experience in this memoir, some of which was written from Hannah’s perspective. I found a kindred spirit in Hannah’s mother, Kirsty Jones. This passage, especially, struck me:
“I remembered the moment [Hannah] was born, the feeling of the tears slipping salty down the side of my face as I held [her] for the first time. Back then I’d known how lucky I was to have her after waiting for so long. But it was only now I knew for certain that she was not mine to keep or lose; Hannah, like every child, was a gift, not a right. I must cherish her for as long as she was mine.”
It’s as though she pulled the thoughts directly out of my head. I’ve been walking around in a state of melancholy. I described this place once before – right after the transplant – when Ana, still so weak, was getting better and better but I was so afraid of what might happen next (rejection, infection, illness) that it was nearly impossible for me to feel completely part of the world of normal people. It was springtime then too – a little more than a year ago – and I finally started to let the trauma of nearly losing Ana slip away. I began to write my book last April. I finished it in November.
And now it’s springtime again – the only season that wasn’t touched by the desperate fear of Ana’s illness. I can’t get past the heavy sadness in my heart. I don’t want to do anything. I don’t want to ride my bike, or get up in the morning or talk to people. I’m starting to collect the moments again – like I did that terrible winter when Ana was so sick and we waited for months for the call for a liver. I know this isn’t good for me and it definitely isn’t good for Ana. she’s in really good spirits – she trusts that the doctors will fix the latest problem and things will go back to normal again.
I trust the doctors too, but I know what this road looks like now. I don’t want her to be in pain. I’m afraid of the hospital – I don’t want her to go back. I don’t know why I’m not feeling strong right now. Why am I so weak? I keep telling people I’m good, but what else can I say?
I’m not good. I’m the farthest thing from good. I’m scared and angry and I feel utterly helpless. The mud is thick and it’s pulling me under. I know I have to find the strength to pull myself up and out of it, but right now it just feels so hard. Maybe if I write it down here – admit it to everyone – I can finally move past it. Because there’s really no other choice than to be strong as Kirsty, Hannah’s mom, reminds me…
“I had to remember what Hannah had taught me, what we had lived during all those years – to be in the moment, to live each one with hope, however dark the road ahead seemed.”