What I Want Out of Life

I think I have figured out what I want out of life. The list has changed since I was in my twenties and thirties. Even my early-to-mid-forties.

I figured it out while walking the Hellacious Hound with Lars yesterday, post-school pickup, pre-work.

We were walking in the cool sunshine and holding hands. I had been crying the past hour about things beyond my control. (An unkind word from a scheduler at Mass General. The death from Tay Sachs disease of a very young child I knew only from his mom's blog.)

The fresh air and sunshine did me good; I had not left my house, except to go to the hospital and pick up Saskia from school, in a couple of weeks. So we were walking and my eyes were wet but not I was not really crying. And it came to me.

"I don't want a vacation," I told Lars. "Or a week at Canyon Ranch." (I know of someone, incredibly enough, who insisted on a week at Canyon Ranch after her child was diagnosed with ADHD. I fear this probably makes me a bad person, but I hate that woman.)

"I don't want fancy stuff, a big house" -- that used to be on my list, a house which could actually accommodate our bedroom furniture, and in which two people could comfortably work in the kitchen at the same time -- "or jewelry. I thought I wanted riding lessons but I don't."

Lars just held my hand and listened.

"You know what I want? Two months, just two, of normalcy. Of waking up and feeling safe and quiet, and without dread. Two months without frequent medical and therapy appointments, and without the stress of constant pleas for items that cost money and that will surely ease our son's anguish, but never do. Two months of spending more time with Saskia. I want to get our nails done together, even though mine are bitten to the quick. (It will have to be toenails, for me.)"

"I want to live like 'other people' -- those folks who may be mythical (I prefer to think not) and whose kids are happy and healthy and (I hate this word) 'normal.' 

"I want to just be me and not this machine who schedules appointments and amazes doctors with how much she knows about illness and disability. I want to have two months where I am not going through the phalanx of medicine bottles, like a long row of soldiers but always at ease (as with everything in our house, the meds are disorderly) twice a day, and figuring out what is what and when it is taken."

"TWO MONTHS OF RESPITE, Lars," I said, "and then I could go back to it." I was crying again.

Lars held my hand tight and we finished our walk. I was so glad he was there beside me, my silent strength.