If you know me at all, (and by now you really should!) you know that I like to plan things early. As early as possible! That might be foreign to a lot of people, but now more than ever it is necessary. To visit my family, for example, we've had to plan around births, holidays, hospital stays etc. Not to mention planning for flight costs.
Due to my pregnancy we last visited the UK in December 08, and our next planned visit is not until the summer of 2010. Also in the summer of 2010 is the bi-annual Moebius Syndrome Conference, this time it will be in Denver, Colorado. We had kind of decided to skip it next year as that will a lot to cover in a short time. (Last time the trip was all paid for by a very generous benefactor!)
Yet, as we both thought about it independently we apparently both decided that the Moebius Conference is not something we should ever skip. Not only is it a time for us to connect with other Moebius parents, but also for Emma to discover that she is not alone in having Moebius, and in fact she is really very blessed with the degree of her condition.
When we talked about it over dinner we both agreed to do whatever necessary to make it happen. The debate is whether we drive (1750 miles, 26 hours each way) or fly (3 times the price!)!!
Later that night I caught part of "Hayley's Story", about a little girl with progeria - an extreme premature aging condition. Seeing how hard she and her family have to fight to find treatment (they know the cause, but no approved treatment) and keep her healthy in the body of an 80/90 year old. Well, I truly realized that we are very blessed that Emma is really so very healthy and so much to look forward too.
Due to my pregnancy we last visited the UK in December 08, and our next planned visit is not until the summer of 2010. Also in the summer of 2010 is the bi-annual Moebius Syndrome Conference, this time it will be in Denver, Colorado. We had kind of decided to skip it next year as that will a lot to cover in a short time. (Last time the trip was all paid for by a very generous benefactor!)
Yet, as we both thought about it independently we apparently both decided that the Moebius Conference is not something we should ever skip. Not only is it a time for us to connect with other Moebius parents, but also for Emma to discover that she is not alone in having Moebius, and in fact she is really very blessed with the degree of her condition.
When we talked about it over dinner we both agreed to do whatever necessary to make it happen. The debate is whether we drive (1750 miles, 26 hours each way) or fly (3 times the price!)!!
Later that night I caught part of "Hayley's Story", about a little girl with progeria - an extreme premature aging condition. Seeing how hard she and her family have to fight to find treatment (they know the cause, but no approved treatment) and keep her healthy in the body of an 80/90 year old. Well, I truly realized that we are very blessed that Emma is really so very healthy and so much to look forward too.
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