This is not a medical post, but I needed to share my feelings.
Ellie has deaf-blindness. It means that she is considered both deaf and blind. That being said...she can see and hear, just not as well as other people.
There are not many Deaf-blind parents around. The last count that I heard was about 120 kids between 0-21 with deaf-blindness in Utah. There is a conference every year in September or October for parents of children with deaf-blindness in Utah. It is sacred to Jason and I. It is a time where we can fit in and feel normal.
I was catching up on one of the other DB mom's blogs and she had linked to another DB Mom's blog, Lisa. Lisa passed away about a year ago. Lisa was a beautiful writer and every entry on her blog was inspiring. She knew how to put into words just what I was feeling and wished that I could say to those around me. She was outgoing, fun-loving and friendly. I miss her.
Here is a link to the post that brought back all of these memories. Her little boy is the one with the orange shirt in the top 2 pics and by himself in the bottom pic. It is beautifully written and expresses so many thoughts and feelings that I feel.
http://lisasramblings.com/2009/05/31/id-like-to-write-a-book
1 comment:
I'm so sorry to hear about your friend Lisa passing away. That's so so sad. Had you ever met her?Her post was really insightful for me. Thanks for re-posting.
I think you seem normal Mikael. I love how you and Jason, and your kids live, and do regular family things. You do great at being normal.
I admit that I do feel itimidated by Ellie sometimes, but I'm trying to step away from that be normal around her too. I have a desire to get to know her better but I just don't know exactly how... I always feel a sweetness and a purity around her.
I'll try to do better and learn from Lisa's post. I love you!
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