Monkey on my Back

I misjudge the strength required and lift her onto my back indelicately. Her chest lands with a thud, and she exhales forcefully into my left ear.

“Sorry about that, J.”

“No problem, Dad. It didn’t hurt at all.”

She adjusts balance on my back, and I reach behind to lock my hands under her rump for support. We use this piggy-back position when we are going short distances and wish to leave the wheelchair behind. It’s easier on everyone and I think Jordan likes traveling this way. To be honest, I like it, too.

“Looks like there’s a monkey on my back,” I say to her.

She giggles.

We call this carrying position The Hodor, after the character in Game of Thrones who carries the crippled Bran Stark around the Seven Kingdoms. We have two other carrying positions. We use Koala for climbing stairs or short standing periods. Jordan rests on one of my hip bones and holds on to me with all fours, just like a koala bear hugging a tree.

The third position she calls “Bride” which is, as it sounds, the threshold carry: her lying horizontal in my outstretched arms. We don’t use this mode of transport much because it’s awkward to move very far and it’s rough on my back. But it is sometimes necessary when I need to scoop her up from a bed or a chair in a hurry, like when she’s feeling sick from a seizure episode.

I imagine many people wonder why I enter a restaurant carrying a tall and lanky 17 year-old girl on my back. But once I set her down to use her legs for the last few yards, it’s obvious. In any event, I’m the only one who’s self-conscious. Jordan thinks it’s cool. She smiles radiantly and tells people that she’s my “little monkey.”

I love these moments with Jordan and I sometimes get sad thinking about a day when it may no longer be possible for her to hop on my back and skip the wheelchair. It’s one of the reasons I’m on a mission to stay in shape, and why I’m careful to mind my back. I love hearing her breathe behind me. Sometimes, she exhales in unison with my steps. And when she’s that close, she often half-whispers into my ear so that even in a big public space we have our own intimate conversations that make the world feel smaller.

Last week, during the super blood red moon, Jordan and I used the Hodor mount to walk up and down the block in search of the astronomical oddity. Sadly, the clouds prevented us from seeing. But she and I chatted idly as we wandered along the sidewalk gazing eastward. It was a very warm night, but there was a breeze coming in from the ocean and I didn’t mind keeping her on my back for such an extended time. I fancied our piggy-back expedition as a long walk with a reverse hug. These moments are precious to me. They are part of the immense gratitude I feel for every day with Jordan.

For 17 years, she’s been my little girl but it has suddenly dawned on Jeanette and I that Jordan will be a legal adult next year. This milestone will make life more complicated. Once she’s 18, she must provide consent for us to be involved in her medical affairs and her care. Otherwise, we have no say.

For the more than 12 years that she has been fighting cancer, I have often felt the pressure of having to make decisions for Jordan. We’ve authorized countless surgeries, radiation, and toxic treatments that themselves are carcinogenic. We always included Jordan in the decision-making, even when she was very young. It is her body and we believed that she always had a right to participate. But back then, she had little power to change the course of action if she strongly objected. Jeanette and I had the final say (although I’m happy to say that we never had an instance of opposing views on what to do next). Next year, the tables reverse. We will be her counselors and the final decision will ultimately be Jordan’s to choose.

We will be hiring a lawyer soon to help us sort out many issues as Jordan becomes a legal adult—everything from enabling us to help her make the best decisions in her health care to helping her develop a living will so that she has more control over what happens to her should she ever wind up back in a critical situation. We have always wanted Jordan to be independent; to feel a sense of pride and achievement in her life. So these matters are wrought with a lot of gravity. And, I suppose it is why I feel even more pleasure when I have the opportunity to hoist my little monkey on my back and carry her around for awhile.

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