Have a question about life, love, or faith? Post it as a comment or email it to melfert@stjohns-cathedral.org, or submit your question online privately.

Hey Rev!

Ever since I had a child with special needs, I’ve had difficulty accepting it. I do feel, however, that I’ve reached a place of peace in living with a dilemma that has no solution, a problem that cannot be fixed. But I’ve retreated into myself because it’s too difficult to open up with others, either family or friends. I put on my “everything is OK” mask to avoid listening to people wanting to offer their insights out of genuine concern for me and my child. So I’ve gone silent until at night I lie awake in bed and pour my innermost thoughts out to God when everyone else is asleep. Opening up to God brings comfort, as does knowing God is with me. So why do I still feel so alone?

- Alone

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Dear Alone:

Of the many parents whom I know with neurologically or physically atypical children, I can’t think of one who has not come to understand her child as a gift and as a blessing, just the way that she is. All of these parents have journeyed to the place that Andrew Solomon speaks of in his extraordinary talk, “Love No Matter What,” in which they are able to truthfully and even joyfully say, “I wouldn’t change my child for anything.” However, not one of these parents started in that place. They all began by being afraid and anxious and angry at the news that their child was different. In other words, all of them began, Alone, where you are now.

The path between understanding your child’s diagnosis as a problem that can’t be solved and understanding it as an integral part of who your child is — the path on which, as Solomon says, you realize that wishing that your child was developmentally typical actually means wishing that you had another child — is paved with grief. It is a path that you build as you walk upon it, laying down flagstones of sorrow, of denial, of self-recrimination, of rage at God. Like every journey through grief, it is a path upon which you will be only able to walk by giving yourself the relief of letting go of the crushing façade that everything is OK, by letting that façade hit the ground and break. You need to grieve for the idea of who your child might have been before you can celebrate who he actually is.

To talk a little bit about that journey, I’m going to engage in a Father Knows Best first and invite a guest expert to share her wisdom with us. My friend Heather Kirn Lanier is the author of “Teaching in the Terrordome,” an extraordinary memoir in which she both challenges and reinvents the tale of a young teacher taking a job at an inner city school. She is also the mother of Fiona, a genetically atypical child, about whom she blogs at starinhereye.wordpress.com. This is what Heather has to say:

*

Here’s my utopian special-needs parenting moment: I look at my daughter, Fiona, who is 2 years old, has sparkling sapphire eyes, no words, and no ability to walk or even crawl, and I think, “You are, just as you are, a profound gift to the world.” I have even thought, in this most utopian moment, “I wouldn’t even fix your fourth chromosome if I could.” Why not? Because in the most blissful of my motherly moments, something in me clicks and I do not see this child’s syndrome as problematic, even though it could mean I change her diapers forever and will probably mean she needs my care for just as long. Instead, I see her as a unique and necessary expression of creation in ways that will probably always remain a little mysterious to me. Maybe this body is exactly where her soul needs to be. Maybe the rapid-fire cognition I so value as an intellectual, as a college English instructor, as a writer and an avid reader, is not needed for this life path of hers. Maybe there’s some intelligence in her “special needs.”

And then there is this moment, the gnashing of teeth moment, a borderline hellish place to be: I see other 2-year-olds. I watch them walk, converse with their parents, place blocks on top of blocks and do other wizardly fine and gross motor things that my child might achieve, someday, but is nowhere near achieving now. And there’s an ache in my chest, a pining, a glimpse into the agony of wanting what I can never have. Not a different child, but a Fiona who has her entire fourth chromosome. Which she doesn’t. And so in that moment, I’m fighting reality. Fiona is who she is, created by God, without bits of the fourth chromosome. Andrew Solomon, as quoted by Martin, is right: wanting her to have all of it is equal to wanting a different child.

Which of course I don’t.

I slide back and forth on the spectrum that has, on its opposite ends, the two “moments” I described. The utopian, “my child is perfect” moment, and the hellish “I wish it weren’t so” moment. Most days, I’m resting somewhat comfortably in between.

Maybe I’m looking too far into the seven sentences in your letter to Martin, but I see in your words the same tension. There’s a part of you, I think, that indeed accepts your child’s special needs to some degree, and there’s a part of you that’s still struggling to accept it — that sees it as the unfixable problem.

Neither modern day culture nor Christian history makes acceptance of disability an easy thing to achieve. I’ll start with the present culture: we tend to want a certain version of “perfect.” And “perfect” is meant to look as able-bodied as possible. As symmetrical as possible, as efficient as possible, and at least average if not above it. If you type the word, “disabled” into a Google search, some of the words Google thinks you might type next are heartbreaking. Despite civil rights progress for a lot of other minorities, it still seems plenty okay in some communities — even the most liberal ones — to devalue the world’s largest minority: people with disabilities. I love me some Tina Fey comedy, but even she has a “You’re so stupid, you must be missing a chromosome” joke in her recent bestselling book.

So I understand your feeling of loneliness. The feeling maybe that you are in a small row boat alone with your kid, sitting in some very choppy waters, with no other comrade around for miles. In parenting children with special needs, I believe our spiritual path asks us to redesign the cultural lenses through which we all see disability. Such radical rewriting of paradigms reminds me of a certain Biblical, sandal-wearing someone, no?

But even within a Christian context, seeing a life with disabilities as valuable is also a struggle against the grain. I recently read that Martin Luther thought disabled people were possessed by the devil. Paul told the Romans that “faith comes by hearing,” which got misinterpreted to mean that the deaf were incapable of faith. And I know a friend whose father, a blind man and an evangelical Christian, has repeatedly gone up to the altar call for a complete healing, only to return to the pews still blind, believing his faith must not be strong enough. I know it’s probably heretical to second-guess Jesus, but sometimes I wish he’d done less healing of the disabled, and more healing of our views on the disabled.

It is not our children who need to be fixed. It’s our cultural and historical view that needs to be fixed. This is my understanding of our role in parenting children with special needs. It is an eye-widening endeavor, and it has broken me open, and I am not always in the utopian place of fully accepting my daughter’s difference, but I know my spiritual path is to pursue that place with all I have.

So how have I attempted to do that? For one, I meet parents whose kids have the same syndrome. I go to regional gatherings and national conferences, and I make friends with folks on Facebook. At first this was scary—would I see something in the older kids that would make me fearful for my child’s future? But it has come to be essential in helping and celebrating Fiona. And I am no longer floating in my lone rowboat in the middle of the ocean. I’m no longer alone. I’m in a larger community.

Second, I have tried as best as I can to include Fiona in the world just as if she were a typically developing kid. I take her to regular playgroups and library time. I take her to church. I explain her chromosomal difference to people matter-of-factly, hoping that an absence of sadness in my voice will keep at bay any pity they might think to express. I want Fiona to be seen as simply a normal expression of creation, however rare.

Third, I have taken a hard, hard look at the assumptions I once made prior to Fiona. This has been the most painful and most healing aspect of the path. For instance, before learning of her diagnosis, I believed I was in control of everything, including my pregnancy. I went to near-manic lengths to create my superbaby. I ate all organic, took copious supplements, never kept my cell phone anywhere near my pregnant belly, and birthed without medication. My child came out already showing signs of delays. She looked malnourished. She wouldn’t fit on the growth chart. Doctors asked me if I’d taken any drugs. I hadn’t even swallowed a doctor-approved Tylenol. Over the course of Fiona’s first year, I learned something very painful and ultimately freeing: I am not in control. And perfection does not exist. And maybe imperfection — in all its many forms — is a blessing.

I don’t know what assumptions your child will help you rewrite. I don’t know how you yourself will get rewritten as a result of this experience. I only know that you are on a deeply transformative path right now, if you let it be, and that path is messy, and at times it is painful, and it might sometimes make you feel all alone, but I encourage you to jump fully into all those experiences, to experience your discomfort, your grief, your stress, and have faith that you will ultimately emerge transformed in a way you never knew was necessary or even possible.

 

Have a question about life, love, or faith? Post it as a comment or email it to melfert@stjohns-cathedral.org, or submit your question online privately.

 

Categories: Beliefs

Martin Elfert

Martin Elfert

The Rev. Martin Elfert is an immigrant to the Christian faith. After the birth of his first child, he began to wonder about the ways in which the Divine was at work in the world. Shortly thereafter, he joined Christ Church Cathedral in Vancouver, BC, where he and his new son were baptized at the Easter Vigil in 2005 and where the community encouraged him to seek ordination.

1 Comment

  1. [...] Father Knows Best: I love, accept my special needs child. Why do I still feel …Religion News Service, on Wed, 26 Jun 2013 09:00:23 -0700She is also the mother of Fiona, a genetically atypical child, about whom she blogs at starinhereye.wordpress.com. This is what Heather has to say: *. Here's my utopian special-needs parenting …. For instance, before learning of her diagnosis, I … [...]

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