Wednesday I missed one of the HPS events of the year – our first foray into lobbying in Washington. I had the privilege of lobbying several times for the National Federation of the Blind when I was in college – but it wasn’t just the hob knobbing on the Hill that I missed. It was the opportunity to see some of my HPS friends.
It’s hard to describe what a bond the HPS community shares. We call ourselves a family and it’s so true. We love each other. We disagree about many things such as politics and religion. We sometimes fight with one another. But in the end we all depend on one another and when I’m with my HPS family, I feel like I’m home.
After a hard day of beating the pavement in Washington, our lobbyists attended a swanky dinner to celebrate the 20th anniversary of the Genetic Alliance. Again, while I’m sure the food was good, I was distressed that I missing out on a very special HPS family moment.
As the frequent readers know, Candice and Crystal (twins with HPS) were honored for their advocacy work. But, we had another surprise cooking for them. Readers may remember Katy’s story. Katy is pretty new to the HPS community. She was only recently diagnosed after a very scary bout of colitis. Like the twins, Katy was also adopted from India.
When I talked to Katy’s mom for the first time she was very upset and concerned (understandably) about her daughter, but as she began to tell me about Katy, I immediately felt like Katy and Crystal and Candice would be kindred spirits. It was the sort of thing you just know instantly in your bones – and as Katy began to heal and got to know the twins – that feeling in my bones just blossomed into a budding and growing friendship between these three very special girls.
They share so much. They share the experience of being adopted from India. They share the experience of growing up with albinism. They share the experience of being diagnosed with Hermansky-Pudlak Syndrome and the many scary nights that has entailed amid medical crisis. But, they share so much more than that.
All three girls were adopted into very faithful Christian homes. All three are sisters in Christ and have a passion for their Lord that oozes out of them, not in a pushy obnoxious way, but in a beautiful gentle way that is powerful. Even their dads look like they could be twins!
Instant messaging may be great, but it’s a pale imitation of the real thing. We so wanted all three girls to get together – but were unsure if Katy’s healing process would be far enough along to make it possible. But, Katy’s been doing great and gaining her freedom from tethers like her PICC line.
And so Donna sprung into action and called Katy’s mom. A plan was worked out to surprise the twins with Katy’s presence at the Genetic Alliance Gala. Oh how I wanted to be there! It’s the sort of story they make movies of.
Who knows if there’s a chance the girls could all be related. We all suspect it because of the many uncanny similarities they share beyond just HPS. But even if they aren’t biologically related, they share so much more than a few genes.
It’s the sort of story that makes you want to turn around, thumb your nose, and give a great big raspberry to anyone that doesn’t believe in miracles. You can read the girls’ version of events on their blogs. (I haven’t read the twins’ version yet, but I’m sure when they get home and settled, they’ll be updating their blog.) Katy’s blog has some great pictures from the event too! Hey Katy, did you take them with your new camera??? Grin!
Katy’s blog: www.katysblog.com
Angels in Voice: www.angelsinvoice.com
It’s hard to describe what a bond the HPS community shares. We call ourselves a family and it’s so true. We love each other. We disagree about many things such as politics and religion. We sometimes fight with one another. But in the end we all depend on one another and when I’m with my HPS family, I feel like I’m home.
After a hard day of beating the pavement in Washington, our lobbyists attended a swanky dinner to celebrate the 20th anniversary of the Genetic Alliance. Again, while I’m sure the food was good, I was distressed that I missing out on a very special HPS family moment.
As the frequent readers know, Candice and Crystal (twins with HPS) were honored for their advocacy work. But, we had another surprise cooking for them. Readers may remember Katy’s story. Katy is pretty new to the HPS community. She was only recently diagnosed after a very scary bout of colitis. Like the twins, Katy was also adopted from India.
When I talked to Katy’s mom for the first time she was very upset and concerned (understandably) about her daughter, but as she began to tell me about Katy, I immediately felt like Katy and Crystal and Candice would be kindred spirits. It was the sort of thing you just know instantly in your bones – and as Katy began to heal and got to know the twins – that feeling in my bones just blossomed into a budding and growing friendship between these three very special girls.
They share so much. They share the experience of being adopted from India. They share the experience of growing up with albinism. They share the experience of being diagnosed with Hermansky-Pudlak Syndrome and the many scary nights that has entailed amid medical crisis. But, they share so much more than that.
All three girls were adopted into very faithful Christian homes. All three are sisters in Christ and have a passion for their Lord that oozes out of them, not in a pushy obnoxious way, but in a beautiful gentle way that is powerful. Even their dads look like they could be twins!
Instant messaging may be great, but it’s a pale imitation of the real thing. We so wanted all three girls to get together – but were unsure if Katy’s healing process would be far enough along to make it possible. But, Katy’s been doing great and gaining her freedom from tethers like her PICC line.
And so Donna sprung into action and called Katy’s mom. A plan was worked out to surprise the twins with Katy’s presence at the Genetic Alliance Gala. Oh how I wanted to be there! It’s the sort of story they make movies of.
Who knows if there’s a chance the girls could all be related. We all suspect it because of the many uncanny similarities they share beyond just HPS. But even if they aren’t biologically related, they share so much more than a few genes.
It’s the sort of story that makes you want to turn around, thumb your nose, and give a great big raspberry to anyone that doesn’t believe in miracles. You can read the girls’ version of events on their blogs. (I haven’t read the twins’ version yet, but I’m sure when they get home and settled, they’ll be updating their blog.) Katy’s blog has some great pictures from the event too! Hey Katy, did you take them with your new camera??? Grin!
Katy’s blog: www.katysblog.com
Angels in Voice: www.angelsinvoice.com
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