39,000 feet

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

-Chaz Ebert to her husband Roger Ebert, on the relapse of his cancer. Life Itself (2014)

I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.

I wasn’t intending for this particular crossing to be more than a chance to eat peanuts and catch up on movies that get ruthlessly vetoed on family movie night. I’ve just finished watching Life Itself, the Steve James documentary about Roger Ebert, the beloved movie critic who influenced not only what I watch but how I think about films.

Steve James and his camera enter Ebert’s life after Ebert had already embarked on a journey with cancer, capturing the unfolding of a relapse which ultimately led to his death during filming. There’s much to say about the movie, but the thing that has me sitting here paralyzed in the dark airplane cabin for the last several hundred miles is what Roger’s wife and caregiver Chaz told Roger upon the cancer’s re-awakening. She recalls for James that upon receiving the news, she offered him a deal if he would muster up the energy to for another round of treatment:

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

It hurts me to say it, but if I’m totally honest I’m not the kind of mom who was wired to easily provide my children with something to look forward to every day. Not with my daughter, who’s neurotypical, or my son, who has a developmental disability and complex social needs. Sometimes it’s even hard to know what that might be, as I wrote years ago. I’m a good mom, I think, but that’s just not the way that my love comes out.

My mothering seeps out in other ways. Some days it is simply the effort of keeping a stable, daily life going. At my best times, it has had me quitting jobs to have more time to coordinate doctor’s visits and order medical supplies. Lately it has me tilting at the windmills of injustice, tackling the inequities that leave people like my son underserved, vulnerable and sometimes invisible. I’ve been an activist for causes relating to diability and health care for several years now, doing work that takes me physically and mentally far away from our home and leaves little time and energy left for even getting dinner on the table most days, let alone creating moments of wonderment and magic. I do it in part for other families who don’t have it as good as we do, but also in the hopes of creating a society that will be more able to help my son life a safe and meaningful life.

The idea that Chaz was proposing, to take responsibility for providing someone else’s reason for living—for making it interesting and delightful—made me squirm in my already uncomfortable seat. Because it’s occurring to me lately that that is exactly what I’m supposed to be doing for my son. With his limited agency and independence, I’m not sure that he has the ability to make it happen for himself. And if he doesn’t, who will? What good is the promise of a future life of meaning and joy if there isn’t one now?

In the developmental disability world, parents are often accused of not being let go of our children. But the fact is that they need us in a much more complex way than anyone wants to admit. Sometimes they need us to make interesting things happen. Or at least, hire, train and supervise the person who does. Sometimes we are their (only) friend. Sometimes that’s our fault. Sometimes it’s not.

What if Chaz Ebert’s contract is exactly the one I should be offering my son? What if instead of attending conferences and writing articles, I should be helping him look at the stars or collect shells on the beach? How do I give him the moments of wonder and delight that come so easily to my daughter? If I don’t, who will? What would it mean to take on the responsibility to create interest and something to look forward to every day? And given that that type of nurturing isn’t my nature, how do I personally sustain the energy to do that? And not just now, but maybe for years to come.

I doubt I will have the answer before I land. I plan to talk to my husband and those closest to us about how we can make a life full of wonder and joy for him. Full of things to look forward to. Full of days to look back on. Full of great days. For all of us.

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in special needs parenting and tagged , , , , , , , . Bookmark the permalink.

5 Responses to 39,000 feet

  1. This is beautiful. Thank you for all the hard work you do. I love that you feel inspired to do something for your son that isn’t part of your nature. That’s something I’m working on as well, trying to nurture in ways that don’t come naturally to me. I wish you well on your journey.

  2. Carolyn R. Thompson says:

    Dear Cristin,I think I hear wh

  3. Sara Riggare says:

    Dearest Cristin, you are so wise, thoughtful and caring! You always help me see the world in ways I had no idea existed and you give of yourself so bravely and generously! I am so very happy we have met (again?)! You inspire me!

  4. dvanleeu17 says:

    Love hearing your voice Christin

  5. Debbie says:

    Although I feel I was born to nuture it’s much more complex with my child with development delays. Even with those closest to me there isn’t always understanding. Of course they have lived it but in a much more removed way. I am my child’s mother, caregiver, best friend, and always there to protect. I only can go to sleep every night praying I have done all these things and helping the world to accept and love my child. The last part of the journey is helping her to feel important and wanted. Thank you as always for helping me to reflect.

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