Sunday, April 27, 2008

Finding Comfort with Our Decision

04/27/2008

If you have been reading the blog recently, you will recall that I have been writing about coincidence, or the lack thereof. Well, today's story is a story about the little boy from North Carolina, Noah, and what he has meant to us here in Texas, and a teenager named Jodie from Baltimore that has meant equally as much. You make the call today...Coincidence or not.

Also, you have probably read about what I call "The Dilemma". The parents of Rasmussen's kids have to make the decision to inflict permanent physical and mental disabilities on their kids, in order to save them from disability, constant seizures and possible death. So, needless to say, parents of these kids struggle daily with guilt, uncertainty, panic, and many other emotions,
some that will be with us for the rest of our lives.

So, Kristi and I have struggled to seek out other parents who are in the same situation as us, so that we would have someone to talk to, and compare notes with, and support each other emotionally. Unfortunately, Rasmussen's Encephalitis is so rare, that it is VERY difficult finding these kids.

We had found a Yahoo Group on the Internet, that focused on Rasmussen's and Hemispherectomy, and we read it religiously. The problem is, that there are not that many of us in existence, so not a lot written. Well, one of those sets of parents, have a teenager named Jodie, who is about to go to college. She had Rasmussen's and her Hemispherectomy, at Johns Hopkins, when she was 3. She is now 18. Her parents gave us the gift of Hope, by inviting us to stay with them during our first visit to Baltimore. Lynn, Al, and Jodie Miller gave us Hope to move forward. They also gave us a collection of videos from over the past 15 years that showed other kids who had done amazing things after their hemispherectomy. Coincidence?

Through this same board, we met a family from North Carolina called the Warricks. Unlike Jodie and most Rasmussen's kids, Noah's symptoms were almost exactly like Jessie's. He had very few Simple Partial Seizures, and it started in his hand and face like Jessie. It was such a blessing to be able to talk to them on the Internet, and realize that their doctors were making the same diagnosis and suggesting the same treatment. In talking to them, we found out that they were going to be at Give Kids the World and Disney, the exact same time. So we set up a time to meet them, and did just that. So, one-in-a-million chance kids came together in April to meet on-in-a-million parents in one-in-a-million places in the World, so that they could comfort each other about a one-in-a-million disease that was affecting their families.

God Bless Noah and his parents. Noah is almost two weeks post surgery and doing great. Noah gave us the gift of Faith, so that we my trust this surgery to give Jessie peace.

Coincidence or not? I think not.

2 comments:

Kelly said...

I'm glad you found our yahoo group. You are a valued member. Jessie is going to be back to herself - truly. We've been there. If you need to see what is coming let us know, and check out our family blog whenever. I don't intend for it to only be about Abby because truly it isn't our daily focus. I know you look forward to the day when it isn't yours either. If we're in DC in June we'll swing by Hopkins - it isn't that far. The Dawsons - Kelly and Abby.

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