Sixteen years ago this evening, you entered the world and my heart. We said goodbye two days later and the adventure of your new life with your amazing family began.
My heart was heavy even though the choice was right for all of us.
To see all you have become, all you will do to better the world fills my heart with pride. Your parents have raised a wonderful man.
Happy Birthday, my first son. You are in my thoughts today.
With love always...
Saturday, May 16, 2015
Monday, May 11, 2015
50 New Things- The first 10 down...
Go big or go home- I did 45 new things for 45, so now I need to do 50 new things in time for my 50th birthday, Which means I needed to get a move on if I am going to finish by March 2017. These are the first 10.
I started in January of 2015 with a Polar Plunge to raise EB awareness. It was cold, like you cannot imagine.
For the first time ever, I attended the DebRA International Research Meeting, held from May 2-6th at the Château Élan in Braselton Georgia. There, I got to meet many of the eminent scientists working in EB treatments and cures, some of whom I have been corresponding with for over eight years. I am hoping some of the unique approaches they are investigating turn out to be good therapies for my patients.
After talking to Jimmy from DebRA Ireland, I promised I would apply for the nurse job in Dublin. I have never applied for a job in another country- even when working in Guatemala, I was a US government employee. I am not sure I am qualified as I am not an Irish citizen and have no visa to work there, but wouldn't it be fun if I am called to interview. Imagine a job interview in Ireland?
On May 7th, I was able for the first time to take part in "Butterfly Kisses for Ellie", an EB fundraiser in Atlanta. I said a few words about the wonderful people both supporting EB research and those working towards treatments and a cure. It is great reconnecting with old friends, but the best part is meeting new families. I love meeting the people I have worked with via phone and e-mail.
On the 8th, I traveled through South Carolina for the first time- stopping for lunch at Chick-fil-A- LOVE Chick-fil-A...
I continued to North Carolina, another new state for me, where I would be spending the next couple of days with my friend, the Ryans.
My first stop was the NASCAR Hall of Fame, where I paired up with Jim, a Vietnam Vet, and we spent the day exploring. I even took the checkered flag in my simulated NASCAR race (SO MUCH FUN!) Jim won in our second round (Jeff Gordon wrecked me and I finished next to last in race 2). They even have a pit crew simulation. Loved it, but 52 seconds is just not going to cut it in the big leagues. It was a wonderful day!
Saturday morning, I was able to attend "Jogging for Jonah", an EB fundraiser in Tanglewood Park, Clemmons, NC, featuring a 5K, a Fun Run and a car show. There were raffles, a bounce house, and inflatable slide and great food. Everyone had a great time. I met new EB families, spent time deciding on my dream car- the Purple People Eater is an early favorite, and enjoyed a wonderful day.
Dinner that night gave me the chance to try oysters for the first time. They were really wonderful. All the food was wonderful, the night was full of laughter and joy and fun. A great evening.
My next adventure was driving through West Virginia. Of course I have driven through WV in the past going from Ohio to New York, but it was like 10 minutes and didn't really count. Going through on Mother's day I was up and down mountains, round sharp curves and have to say- we live in a beautiful country. I stopped for lunch and admired the view- spectacular. (That leaves me at 17 states to go.
Life is just full of adventure. Only 40 new things to go!
I started in January of 2015 with a Polar Plunge to raise EB awareness. It was cold, like you cannot imagine.
For the first time ever, I attended the DebRA International Research Meeting, held from May 2-6th at the Château Élan in Braselton Georgia. There, I got to meet many of the eminent scientists working in EB treatments and cures, some of whom I have been corresponding with for over eight years. I am hoping some of the unique approaches they are investigating turn out to be good therapies for my patients.
After talking to Jimmy from DebRA Ireland, I promised I would apply for the nurse job in Dublin. I have never applied for a job in another country- even when working in Guatemala, I was a US government employee. I am not sure I am qualified as I am not an Irish citizen and have no visa to work there, but wouldn't it be fun if I am called to interview. Imagine a job interview in Ireland?
On May 7th, I was able for the first time to take part in "Butterfly Kisses for Ellie", an EB fundraiser in Atlanta. I said a few words about the wonderful people both supporting EB research and those working towards treatments and a cure. It is great reconnecting with old friends, but the best part is meeting new families. I love meeting the people I have worked with via phone and e-mail.
On the 8th, I traveled through South Carolina for the first time- stopping for lunch at Chick-fil-A- LOVE Chick-fil-A...
I continued to North Carolina, another new state for me, where I would be spending the next couple of days with my friend, the Ryans.
My first stop was the NASCAR Hall of Fame, where I paired up with Jim, a Vietnam Vet, and we spent the day exploring. I even took the checkered flag in my simulated NASCAR race (SO MUCH FUN!) Jim won in our second round (Jeff Gordon wrecked me and I finished next to last in race 2). They even have a pit crew simulation. Loved it, but 52 seconds is just not going to cut it in the big leagues. It was a wonderful day!
Saturday morning, I was able to attend "Jogging for Jonah", an EB fundraiser in Tanglewood Park, Clemmons, NC, featuring a 5K, a Fun Run and a car show. There were raffles, a bounce house, and inflatable slide and great food. Everyone had a great time. I met new EB families, spent time deciding on my dream car- the Purple People Eater is an early favorite, and enjoyed a wonderful day.
Dinner that night gave me the chance to try oysters for the first time. They were really wonderful. All the food was wonderful, the night was full of laughter and joy and fun. A great evening.
My next adventure was driving through West Virginia. Of course I have driven through WV in the past going from Ohio to New York, but it was like 10 minutes and didn't really count. Going through on Mother's day I was up and down mountains, round sharp curves and have to say- we live in a beautiful country. I stopped for lunch and admired the view- spectacular. (That leaves me at 17 states to go.
Life is just full of adventure. Only 40 new things to go!
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