July 24, 2012
Ethan turned 2 years old yesterday!
We actually had two birthday celebrations. The first was on Saturday. We celebrated with my side of the family at my parents house. We had a combined birthday party for me, my cousin Mike, my Grandpa Troutt, my cousin Callie and Ethan. We were celebrating a combined 158 years!
It was wonderful to spend the day with our family. There was tons of food, fun, and presents! Ethan even touched some cake this year and ate a few bites of coconut ice cream.
Then last night we had another birthday party here at our house with Jeff's side of the family. Our house was full of little kids. Here is the best picture of the all the cousins that were at the party that I could get.
Our family from the Chicagoland area were unable to make it to a Monday evening birthday party, so we missed them of course, but I think I can safely say that Miles and Cora would have had a blast with all the other cousins if they had been able to make it.
We enjoyed dinner, cake & ice cream and Ethan got some new toys! One of the best things was that Ethan was really interacting with some of the other kids and following them around the best that he could. He did great except when it was time to have cake -- he didn't want anything to do with that!
During each party I got pretty emotional for a few moments. Everyone's birthday is special, but when you face a diagnosis like PBD, or other terminal illness, they can mean a lot more. I still remember like yesterday holding our little 28 day old son in our arms and learning that he had a rare genetic disease and that he had only a 50% chance of living past his first birthday and that in addition to being hearing impaired, visually impaired, physically and mentally handicapped most children with PBD do not live past the age of ten.
What does that mean and look like for me? Of the 16 children that the GFPD knows of that were born with PBD in 2010, only 7 (including Ethan) are still alive. Of the 15 children that the GFPD knows of that were born with PBD in 2011, only 7 are still alive as of today. The GFPD has become a second family to me and we morn the loss of these children together, even if we've never met each other in person because while we may only have chatted online, we have a bond, we are a family. So yesterday as I rejoiced and celebrated my son's birthday I also ached because of the reality of Ethan's diagnosis and for all of my GFPD family whose little ones they can no longer hold, hug and embrace.
While this is not an easy road, and we struggle a lot, but it appears that the Lord is not yet done with the mission that He has for Ethan here on Earth (or for us for that matter).
I want to especially thank everyone that made a donation to the GFPD in honor of Ethan's birthday! You helped raise just over $200 that will go to help the GFPD support families, raise awareness, and fund research. Thank you for honoring Ethan and our family with your donation!