The Hope of Living in Community with Others

dedicated to another Joy living with Grace: Hang in there, keep moving forward

I think one of the most difficult things anyone deals with in life is becoming a parent. Time and again we hear first-time parents sharing comments that reveal they had absolutely no idea what they were getting themselves into. What’s more, they had no idea how dramatically their lives would shift focus. To become a parent means your life is no longer your own.

We flirt with that notion in marriage. Parenthood kisses us squarely in the face with it.

When your child puts you in a “special” category of parenthood, you wrestle with added burdens of what that “specialness” means. So many stereotypes and preconceptions. So many unacknowledged prejudices and oversights--all while friends and loved ones are attempting to soothe your grief and anger with compliments of how admirably you are dealing with your personal tragedy.

And let’s be frank: Having a child with a disability is a personal tragedy. To acknowledge that doesn’t mean we don’t love our child or that we regard our child as tragic. It’s the circumstances wrought by our child’s altered existence that are tragic.

And let’s not forget: In our ancient cultural past, our children’s lives were regarded as God’s abomination for sinful living. In our not so distant cultural past, our children died because society wasn’t equipped to care for them. Today our children live because medicine makes it possible for them to do so, yet our society hasn’t fully figured out what that means for the rest of us. Our society now includes adults living with severe disabilities, and they are living a quality of life not imagined possible just a generation ago. So where does that leave the moms and dads of these children? Our culture hasn’t figured that out yet, and I don’t think its come to terms with God’s perceived role in all of it either.

People living outside the special reality that belongs to parents of children with disabilities simply cannot see what we do. I don’t like positioning it as a “we v. they” perspective, but I once was them and that’s how I know. Each day I (we) live a gut-wrenching truth outside their realm of existence. That’s just what it is. I (we) remember the difference. It’s as real a phenomenon as me not fully understanding the brutal horrors of famine or the helplessness of abuse because I’ve not lived them firsthand.

I cannot fully understand something I do not intimately know. But that doesn’t mean I shouldn’t try.

Those intimately connected to "the disabled community" understand the term is a bit of an oxymoron. Society doesn't make it easy for those with disabilities to live with a sense of community. Their sense of community is created within a contained system intended to protect persons with disabilities. At the same time it incubates others from the inconveniences their lives cause. It’s this disconnect that leads me to think of society itself as a disabled community. Living apart from the greater community is not living in community with the world.

Shame on any coworker, friend or relative who attempts to define my life only in the context of a parent of a child with a disability. Confining me to that role may make their understanding of life and their opportunities in it less complicated but it keeps us separate. For them, I’m now on a trajectory to professional advocacy rather than professional achievement, a path outside their collegial realm. It seems that makes me easier to deal with somehow. What they forget is that relegating me to a role that's one step removed means not having my voice at the table. And I now understand how my voice—my child’s voice—needs to be heard in regular daily living. Not just in the realm of some distant special needs world.

All parents are—in the best of circumstances—a child’s best advocate. We advocate, even putting our lives on hold for a time, in order to place our children first. That’s just what parents do. But that doesn’t mean we forsake our dreams forever. Keeping our dreams and passions alive, even if in a transformed version, sustains us.

Others may need to be reminded that our child’s arrival did not erase our dreams and passions—our professional and personal goals. Instead our child likely ignited a fierce need to keep them alive for our sake and for our child’s. They are part of our identity. They existed before our child, and they will live on after.

Our dreams and passions fuel the energy needed for our demanding daily existence. Our societal companions need to understand that. Supporting us directly impacts our children and enriches the communities in which we live. We learn more about who we are through our children just like “normal” parents do. That doesn’t mean being a good parent for our child is our only aspiration. Parenthood is probably not their sole aspiration either. It just makes it easier for them if we carry the bulk of society’s disability burden.

Feelings of wanting more, doing more and being more should not be discounted. They won’t be assuaged by well-meaning admonitions to be grateful for the lives we have. We are grateful. In fact we know a gratitude that runs deeper than what our coworkers, friends or relatives with “normal” children can comprehend.

Writing the words above makes me frustrated. I can hear them sounding almost self-righteous, courting a sort of egotism that belies the life that I and so many others lead. I just wish I could be better at explaining what I see and what I feel. These words are coming from a bold sense of purpose: I have to try.

Why do I feel so bold anyway? It's my answer to the frustration of my altered reality. I used to be one of "them." I remember my naïvete when I’d not had the privilege of living an altered existence. My son ushered me to a new understanding of my identity and my place in the world: I am no greater or less than anyone else. Because of that, I live open to many things: How the mother of a child dying from hunger might regard grief as a precursor to new life, how the mother of a child living with an abuser could fear living without means more than remaining alive, and how the mother of a child born gay understands her son was born perfect in God’s sight. I’ve found a way to live closer to those realms of existence, and I am better for it.

Life is big and long and large. The needs my child has today are far different than what he will require even next month or next year. The same goes for me. What does that mean for him? For me? For us?

I don’t know. But I sure look forward to finding out. One day at a time, one person at a time, one step closer to life lived fully in community with all things divine.

Grouchy Day

I was looking through files in my computer and ran across this piece. I thought this blog would be a nice place to share it. And even though I wrote it more than a year ago, I recognize the day described as similar to ones I've lived more recently.

Grouchy Day - written Oct. 7, 2007

On Wednesday of last week, I was having too many “special mom” moments—those are moments when being the mom of a child with both intellectual and physical disabilities is more bother than blessing. My oldest son, Stross, had not managed his own medical cares well the day before, causing him to miss out on our specialized studying time. As a result, he totally bombed a modified test that his teacher’s aide had fretted over, causing her to write a very detailed note that required a very detailed response from me. Then the school nurse called needing my help (and of course I had not copied the handout the public relations class that I teach yet). Still I headed off to the high school on a rescue mission, missing my chance for lunch.

There were some more things: I didn’t get to exercise that morning; my scale seemed to be weighing me heavier than I’d remembered somehow; my computer chose an inconvenient time to display a “black box of death”; and some other pretty trivial stuff happened that I don’t care to mention here. But “things” were adding up in a way that made me grouchy; and the mood lasted into the next day. To lift my spirits, I put on a dress before heading out the door. And I felt better.

Now, some people might call that “faking it until you make it” – but I believe that’s a dangerous notion. I prefer to think of it as relying on a coping technique I know works for me. There’s nothing fake about it.

I own the life I lead, and I know how to lift my spirit in life-affirming ways when necessary. On that particular Wednesday it took a dress. On another day it might take singing a Broadway album in full voice or paging through a photo album. I might even need to call a distant friend I haven’t spoken to in months or even years.

I know what it takes to feel like me again. But only I know what that fully means. That thought alone might require me to lift my spirits to a place where I don't feel so alone. I think I'll grab a piece of dark chocolate and think about that some more.