by Taryn Skees, Guest Blogger
Read more from Taryn at her blog More Skees Please!
Update February 11, 2013: Aiden is five now, and you can see a slideshow of his wonderful, sweet, challenging journey on Taryn’s blog. Happy 5th Birthday, Aiden!
My son Ethan, 4, has always been the kind of boy who wants to know how things work. He won’t just play with a toy. He’ll study it – turn it around, lift it up, move it back and forth watching the gears shift. And after doing so, the ones that intrigue him the most become his very favorite.
When my second son Aiden was born in 2008 in Louisville, Kentucky, we were shocked to find out that he had Apert Syndrome, a very rare craniofacial condition that affects the skull, face, hands and feet. He was five weeks early and was whisked to the NICU because of breathing troubles. Needless to say we were scared.
As we processed the diagnosis we also had to figure out how we were going to care for our new son in the NICU with an 11-month old at home 40 minutes away. That is when we heard about the Ronald McDonald Family Room tucked away in the lower level of the hospital. While we wanted nothing more than to be bringing Aiden home to meet his big brother, we were told to prepare for several weeks in the NICU. We made arrangements for our older son to stay with family so that we could stay at the Family Room to be closer to Aiden. We felt extremely grateful to have the opportunity to do everything we could for him without having to drive 40 minutes back and forth every day.
After Aiden’s discharge from the NICU, the journey was just beginning. Because Apert Syndrome is so rare, there are not many craniofacial teams that have a lot of experience treating kids with the condition. We searched high and low to find the best team for Aiden and ended up finding it inDallas, TX. We packed our bags and headed toTexas!
Our stay at the Family Room reminded us about the Ronald McDonald House, so we looked into the one in Dallas and decided to stay there during our first visit with the craniofacial team, and our subsequent visits for Aiden’s surgeries. Once again we were relieved to have a place to go when we weren’t at the hospital. Rather than a six-room facility like the Family Room at the hospital, the Dallas Ronald McDonald House was much bigger and had more to offer families. The meals, the private rooms to cry in, the quiet reading areas, the friendly faces of the volunteers who made us feel so welcome during what was one of the scariest times in our lives – those are things that left a huge impression on me.
After five surgeries, Aiden is doing wonderfully. Although he will need several more surgeries as he grows, we were fortunate to enjoy a long stretch without any need for specialty medical care. During that time, I wanted to get involved with the Ronald McDonald House, an organization that had become so special to my family. Like my son Ethan playing with his toys, I had often found myself wondering “How does it all work”?
Having experienced all that the House and Family Room had to offer first hand, I now wanted to get involved more deeply. How did they get people to cook the meals? Who cleaned the rooms? How many families like mine have been helped? I knew there was so much more to it than I ever imagined while I was there using it, and I wanted to be part of paying it forward.
After my husband’s job brought us from Indiana to Austin, I contacted Ronald McDonald House Charities here and began volunteering. I recently had the opportunity to volunteer on the auction committee for this year’s Bandana Ball which raises around $400,000 for the Austin House and Family Room. I’m no longer on the outside looking in. I’m learning just how much goes into making each and every House a home.
I’m so proud to be a part of such a wonderful organization, and I cannot wait to continue to serve in any way possible. As a family who has utilized RMHC services, I hope to provide a unique perspective as a volunteer for many years to come.
~ Taryn Skees
RMHC family and volunteer