Tuesday, May 18, 2010

'I hope in me she sees something of herself'


I'm delighted to share a guest blog today from Ellen Dollar, a writer in West Hartford, Connecticut who has a bone disorder that she shares with her daughter Leah (pictured above). Does it make it easier, or harder, to parent a child who has the same disability you have? I thank Ellen for her thoughtful, moving response! Read more about Ellen's blogs and upcoming book at the bottom.

'I hope in me she sees something of herself'
By Ellen Dollar

“Shhh, I know. I know it hurts.”

How often we parents say that as we soothe our children after they’ve been wounded. We do it when they are lying tangled in their bed sheets with stomach cramps or on a hospital gurney awaiting the cast, the stitches, the pain meds. We do it when the injury is less obvious but no less great, when they are stung by rejection or hobbled by failure.

Like most of you who read BLOOM, I am the parent of a child with a disability. But unlike many of you, I have the same disability as my child does, a genetic bone disorder called osteogenesis imperfecta (OI), which causes fragile bones. My oldest daughter, Leah, 10, inherited OI, while my younger two children, Meg and Ben, did not.

When I say to Leah, “I know it hurts,” I really mean it. I know exactly what a fractured leg or arm feels like. I know the helpless panic that sets in when an X-ray tech says, “I have to move you a little bit to get the right angle.” I know the resigned dread of realizing that some long-anticipated plan—summer camp, a family vacation, a starring role in the school play—will fall victim to this capricious disorder.

This knowledge is actually a liability in the harrowing hours following a fracture. I have had many emergency-room conversations about Leah’s care while sitting with my head on my knees and an ice pack pressed to the back of my neck in a frantic effort to stave off the dizziness and nausea that threaten to transform me from competent mother to helpless patient. The memory of my own three dozen fractures abides, literally, in my bones, emerging as a consuming menace when I am confronted by Leah’s hoarse cries, the hospital’s antiseptic odor and harsh lights, and the crushing knowledge of how this fracture will bring hopes and plans clattering down in a great heap.

I’ve often heard parents say, “If I could bear the pain for my child, I would.” I have never said or even thought such a thing. I hate the pain. I just want it to go away and leave both of us alone. And so, when my daughter cries in her lowest moments that she would rather die than break another bone, I hear her. I know. The terrible part is that my knowing doesn’t make it any easier for her—at least not in those moments when nothing but pain exists or matters.

In less brutal moments, my experience with OI can make things easier. When Leah was diagnosed at six weeks old, we experienced none of that overwhelmed uncertainty that many new parents face when they are told their child has a disorder they’ve never heard of. I not only had 31 years of living with OI, but also served as the communications manager for the nonprofit OI Foundation until right before Leah’s birth. I had the latest information about promising drug treatments, new casting and surgical techniques, and physical therapy. We have very few horror stories about self-righteous doctors insisting they know better than us, or school personnel unwilling to accommodate Leah’s needs. I attribute this mostly to sheer good luck, but my years of experience have also made me a confident advocate. I have sought out professionals open to partnership and willing to concede that, often, we know more than they do. Of course, most parents of kids with disabilities become equally confident and informed. My personal and professional knowledge of OI just gave me a head start.

But day to day—when we are not dealing with a new fracture or meeting with professionals to chart our course—does my having the same disorder as my daughter make a difference? That’s a conversation I’d like to have with Leah when she’s older, because I’m sure her perspective is different than mine.

My sense is that our shared identity as people with OI significantly affects our family’s daily life, beyond some obvious limitations: I can’t help my four-year-old navigate the monkey bars, we don’t do family bike rides, and we’re not at all concerned with raising star athletes. In me, all three of my kids have an ever-present reminder that people with disabilities can live fulfilling, happy, successful lives. I hope that our abundant life with OI makes clear the folly of cultural obsessions with beauty, athleticism, and bodies that meet narrow standards of perfection. I hope that seeing me as a wife and mother will free Leah from agonizing doubts that anyone could ever love someone with a body that doesn’t live up to those standards. I lived with such doubts for years, and in many ways, that pain was harder to bear than the pain of broken bones.

Leah looks more like me than my other two kids. I look at her and see my long, double-jointed fingers (she and I enjoy showing off our disconcerting “finger tricks”); my flat feet and soft ankles; my skinny, slightly crooked limbs; my eyes with their bluish tint, which are a telltale sign of OI. I hope that, as she grows, Leah looks at me—at my spidery fingers and strangely colored eyes, my wobbly gait and odd angles—and sees something of herself. And I hope that in that recognition, she discovers a source of comfort and confidence.

Ellen Dollar writes about family and motherhood, faith, and living with a bone disorder which she shares with her oldest daughter. She is working on a book (to be published by Westminster John Knox in 2011) about the ethics and theology of assisted reproduction and genetic screening, drawing on her experience as someone with a genetic disorder who chose to have biological children with a significant chance of inheriting the disorder. Ellen blogs at Choices that Matter and The Five Dollars.

9 comments:

Ellen, thank you for sharing your story with us. Both you and your daughter are beautiful -- I love, especially, how your heads are tilted toward one another. I look forward to your book!

Louise -- This is certainly perfect timing alongside my own blog interview of Bonnie J. Rough and the release of her new book!

Elizabeth -- yes, readers should check out your interview at:

http://elizabethaquino.blogspot.com/2010/05/interview-and-giveaway.html

I'll plug Elizabeth's interview of Bonnie Rough as well. I found it to be a very thought-provoking interview and cannot wait to read her book.

Ellen, I found this a fascinating piece -- especially in regards to the pain issues, and how Leah's fractures call up your own body's memories of 3 dozen fractures. I can't imagine how hard it must be to quiet those visceral reactions so that you can be present with Leah.

I also found this very telling and honest:

I’ve often heard parents say, “If I could bear the pain for my child, I would.” I have never said or even thought such a thing. I hate the pain. I just want it to go away and leave both of us alone.

That is very much the reaction I had to Ben's recent hospitalizations and hearing him and other children in pain.

I think you are a tremendous role model to Leah and to all of your children and that your everyday lives with OI provide fodder for important lessons in what matters in life.

I hope you will share more with us about your research re assisted reproduction and genetic screening and your personal parenting experiences. Thanks again!

Ellen, I loved this post! You're always so thoughtful, and you do a great service to your kids with your positive, can-do attitude.

So powerful Ellen. Your writing is poignant and real. As a sorority sister and college classmate I am embarrassed that I had no idea what you were living with. This is an amazing insight into your life and of those living with disabilites. Your positive spirit is truly an inspiration. I can't wait read more. I have just joined the blogging world and you will be one of my role models for sure.

Dearest Ellen,

Your daugther will one day see something of herself in you, as see wholeheartedly explains, "It is often said that children are a blessing, but you will forever be my saving grace."

Yours truly,

Matt Kamaratakis

I too share disability with my daughter. Kaitlyn is 9.5 and because of my poor experience with surgeries, we have so far been able to avoid surgical intervention, opting instead for afo's, a pavloc harness and other options. I was born with bilateral clubfoot and other challenges - she was born with bilateral hip dysplasia and the muscular challenges associated with clubfoot.

Some days I am glad that I have the experiences I do behind me - I know where to go to get the help Kaitlyn needs. I know how to be her advocate, and how she feels in 37 degree heat with afo's chaffing at her legs - I know, because I have them on as well. And I can say quite truthfully, "if I can do it, so can you".

But it also hurts in a place I cannot even describe to see her wrestle with the same problems as I have, and especially as she reaches puberty and the teen years, wonder how I will help her to navigate the body image and self esteem issues I know she will face.

Thanks so much for highlighting the reality of this experience for those facing generational disability.

Hi -- I just received this comment but for some reason it will not post, so I am posting it!

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Heather Morgan has left a new comment on your post "'I hope in me she sees something of herself'":

I too share disability with my daughter. Kaitlyn is 9.5 and because of my poor experience with surgeries, we have so far been able to avoid surgical intervention, opting instead for afo's, a pavloc harness and other options. I was born with bilateral clubfoot and other challenges - she was born with bilateral hip dysplasia and the muscular challenges associated with clubfoot.

Some days I am glad that I have the experiences I do behind me - I know where to go to get the help Kaitlyn needs. I know how to be her advocate, and how she feels in 37 degree heat with afo's chaffing at her legs - I know, because I have them on as well. And I can say quite truthfully, "if I can do it, so can you".

But it also hurts in a place I cannot even describe to see her wrestle with the same problems as I have, and especially as she reaches puberty and the teen years, wonder how I will help her to navigate the body image and self esteem issues I know she will face.

Thanks so much for highlighting the reality of this experience for those facing generational disability.