Some Tough Questions

The other week Madison and I took a walk. She unloaded all the ugly feelings she'd been hoarding over the last few weeks. As we walked along I listened patiently to the litany of grievances she had against me: too busy with Meg; on the phone with doctors too much; too tired to do fun things, etc. As we sit down at the picnic table in the backyard, she asks, "How long will Meg be disabled?" I say, "Well, to some extent, her whole life."

"What! You never told me that!" So untrue. The next few minutes are spent revisiting the finer points of physical and mental rehabilitation: we don't know how the late effects of radiation will impact her, only that they will. We don't know how far she'll progress with physical, occupational and speech therapies. In my heart, I know she will always carry disabilities, both mental and physical. But my next exchange with Madison cuts me:

Maddy: "Mom, will Meg have to go to a special high school?"
Me: "I don't know, Maddy. Maybe."
Maddy: "Mom, who will want to be Meaghan's boyfriend? Who will want to marry her?"

And that's really the crux of it, isn't it? Who will want, love and care for Meaghan as an adult? Will she need care as an adult? Will she be self-sufficient? The past few weeks, as my Maddy and Ethan lament my lack of availability, as I wade through the near constant clutter and laundry of our household, I question the value of my efforts. Is it worth short-changing the rest of the household to pursue therapies and treatments and services for Meg?

Of course it is worth it! End of story. Right? Not so fast. We must incorporate Meg’s needs as an inclusive family effort. That’s a pretty tall order. How have I measured up? You’d have to ask my fiercest critics: Madison and Ethan. It is easier to rage against Mommy, a tangible constant, rather than rage against a nebulous enemy that lurks in your brain.

We have figured out that before scheduled an inpatient stay we do something fun together as a family, like see a movie. We have lots planned for the summer: a quiet trip to a friend’s cottage; lots of physical and occupational therapy; lots and lots of swimming; maybe even a return to Great Wolf Lodge. Now all’s we need is for Meg’s counts to cooperate. We want this summer to be about family and not just about Meg.

So, here we are again, at an inpatient chemo stay, starting the fourth cycle out of nine. It’s the last week of school, Madison had a field trip yesterday and an awards banquet tonight. I missed both. Ethan has his last field trip of the year. I’ll miss that, too. I wish I could be at all places. Every mom wishes that under normal circumstances. Perhaps the only solace to offer the big kids is that I would be there for them. I need to believe that both Maddy and Ethan know without question that I would advocate for them as relentlessly as I do for Meg.

One closing note: while Maddy grieves the loss of her childhood and struggles to manage the resentment she feels towards Meg, she did say, without hesitation, that Meg should live with her when she grows up.