Tuesday, May 20, 2008

update on little m

{this post was originally an email sent out as we learned about m's hearing loss}

Thank you so much for your thoughts and prayers for us and M this past few days. We feel very loved and supported from those of you who are both near and far. It has been a hard weekend. We went for M's hearing test on Friday, and after about two hours of testing, we got very discouraging news.

M was diagnosed with severe to profound hearing loss; the type of loss she has is permanent and is most likely (or at least as far as we know) just random. Hearing loss goes from mild to moderate to moderately severe to severe to profound. Profound hearing loss is what would commonly be known as deafness. Her tests show that she can't hear anything until the very top range of severe loss, and the lower range of profound loss.

She may have the ability to hear with very powerful hearing aids; if those do not work to help her hear, then cochlear implants may be a possibility. That's about all we know at this point as we wait for the complete test results and follow up. But to be honest, we are not even at the point where we care much about the specifics of how technology can help her hear. At the moment we are wrestling with many different emotions- from changed expectations of what life will look like to thankfulness that the screening caught her loss so quickly to complete sadness. Both Matt and I are pretty overwhelmed with sadness. It sort of feels like we got robbed of this joyful beginning part of her life. Instead of just enjoying our new daughter, we are scheduling doctor's appointments, handling insurance and specialists, researching hearing loss and learning an entire new glossary of terms. Most of all, we are incredibly broken feeling. So at the moment we are processing this, and coming to grips with a new reality for our lives.

We chose the name M for a very specific reason, and now it seems more fitting than we could have predicted. When I spent time in West Africa, part of the time was in M, the capitol city of Liberia, which had been devastated because of the awful Liberian civil war. My Liberian friends and those I met would always describe how beautiful the city had once been, and would speak with hope of what the city could become, even though it literally was falling apart. That image, of having great hope despite the surrounding circumstances, resonated with Matt and me. We wanted our child to be a person of hope and beauty even when that wasn't what life or the world looked like at the moment. And here we are. In a place that seems so dark at the moment. 

We hold this grief with the knowledge that even with M's hearing loss we are so blessed, gifted, and privileged with a delightful and perfect child. At the same time it does feel that our immediate little world is crumbling, and we bear the weight of so much sadness right now. With hope that we will move out of this place of sadness, we ask you to hold us and M in your thoughts and prayers. We are thankful to have so many special people in our lives who we know love us and will sit with us in this hard place.

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