1-26-06 7 months ago...
It's hard to believe 7 months ago we had a baby...let alone believe that just 7 months ago we were living an entirely different life than now. These past months have seemed like years but at the same time have flown by. In all ways, our life has been totally transformed but not without much sacrafice. It has been breathtaking to look back at where we were just 7 months ago. What is truely incredible to see is the physical, social, emotional and mental growth that Burke has accomplished as well as the growth of our relationships and faith.
I recently bought a great book entitled "Changed by a Child; Companion Notes for Parents of a Child with a Disablity" authored by Barbara Gill. As you know, Burke has been diagnosed with severe to profound hearing loss...he is deaf and with that diagnosis comes membership to a whole new group of people...the disabled. I wanted to share some very touching and beautiful meditations and quotes from the book that resonated with me... I hope that it gives you a glimps of what goes on in the heart of a mom who has a baby with a disability and may change the way that you respond to those who do.
Sorrow ~ My pain felt like water penetrating into the sand, soundless, into the core of my being. -Anchee Min
When our baby was born we lost something that we were already in love with-our idea of what he should be. No baby could ever completely fulfill that idea or be that fantasy, but most babies approach or overlap our dream baby, because our dreams come from what we know, from our idea of the norm. A child with a disability was not in our picture at all, except maybe as an occasional fear. We who have a child with a disability lost not only our fantasy baby, but our reliance on having a "normal" baby.We feel this kind of loss deep within ourselves. It does heal, but it heals around the edges, leaving an open space in our heart. We grow around the scar and the hole in our heart, and they become part of our architecture, part of who we are. But when the wind blows a certain way, we always hear and feel it. It makes a sad sound. It makes our heart ache.
Difference ~ His deafness is neither a talisman or a curse, but something at once more prosaic and profound; an aspect of himself. -Leah Cohen, whose paternal grandparents are deaf.
What is wrong with this picture? Which one is not like the others? Which one doesn't belong? Picking out what's different is a skill we begin learning as young children. By the time we are teenagers we've become expert at finding who and what doesn't fit. It's a useful skill, enabling us to choose the freshest flowers or avoid the pothole in the road. But it can get in our way when we think about people with disabilities, leading us to focus on what's "wrong" and on how they are different from others , and to believe that disability means "abnormality" or "deficiency". It may lead us to think our own children can't belong because they are different. Our child's disability is a reality, but it is only one part of who he is; it need not define who he is or who we are.
I recently bought a great book entitled "Changed by a Child; Companion Notes for Parents of a Child with a Disablity" authored by Barbara Gill. As you know, Burke has been diagnosed with severe to profound hearing loss...he is deaf and with that diagnosis comes membership to a whole new group of people...the disabled. I wanted to share some very touching and beautiful meditations and quotes from the book that resonated with me... I hope that it gives you a glimps of what goes on in the heart of a mom who has a baby with a disability and may change the way that you respond to those who do.
Sorrow ~ My pain felt like water penetrating into the sand, soundless, into the core of my being. -Anchee Min
When our baby was born we lost something that we were already in love with-our idea of what he should be. No baby could ever completely fulfill that idea or be that fantasy, but most babies approach or overlap our dream baby, because our dreams come from what we know, from our idea of the norm. A child with a disability was not in our picture at all, except maybe as an occasional fear. We who have a child with a disability lost not only our fantasy baby, but our reliance on having a "normal" baby.We feel this kind of loss deep within ourselves. It does heal, but it heals around the edges, leaving an open space in our heart. We grow around the scar and the hole in our heart, and they become part of our architecture, part of who we are. But when the wind blows a certain way, we always hear and feel it. It makes a sad sound. It makes our heart ache.
Difference ~ His deafness is neither a talisman or a curse, but something at once more prosaic and profound; an aspect of himself. -Leah Cohen, whose paternal grandparents are deaf.
What is wrong with this picture? Which one is not like the others? Which one doesn't belong? Picking out what's different is a skill we begin learning as young children. By the time we are teenagers we've become expert at finding who and what doesn't fit. It's a useful skill, enabling us to choose the freshest flowers or avoid the pothole in the road. But it can get in our way when we think about people with disabilities, leading us to focus on what's "wrong" and on how they are different from others , and to believe that disability means "abnormality" or "deficiency". It may lead us to think our own children can't belong because they are different. Our child's disability is a reality, but it is only one part of who he is; it need not define who he is or who we are.
Comments
Love the pictures of Burke, especially the one where Burke is looking at you Chris!!
My goddaughter, Karly's parents recently found out why she has hearing loss (mondini deformation of the cochlea) and currently has a severe hearing loss, so if you ever need to connect with other parents of children with hearing loss, I would be glad to give you their e-mail.
Also, glad to hear that Burke is doing well with his hearing aids.
Sending our love and prayers,
Steph, Dave, Ellie and Luke