It's hard to believe that Ryan would be 8 this year! Once again, Craig and I are raising money to support research and family support for people struggling with EB. I truly believe that a cure is just around the corner and will continue to raise money until no child suffers from EB.
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About Ryan David Scott: We will never forget the moment we first learned about Ryan. It was December 22nd – just a few days before Christmas, and what we had been planning as a nice long vacation relaxing at home and visiting with family. Our plans for a quiet Christmas at home were about to go out the window. Our social worker was on the line, and we had been matched with a birth mom. This was the moment we had been waiting for anxiously for months since we had completed our adoption paperwork. We quickly learned the basic details – a little bit about the birthparents, and that it was a baby boy, due any day, being born in Mississippi. Before ever meeting our baby boy, we knew he was meant to be with us. Everything felt perfect.
Two days after Christmas, we got official word that the baby had been born, and we had to get ourselves down to Mississippi as soon as possible. Grandma and Grandpa rushed to our house to watch Spencer, and we hopped the first flight down to New Orleans and drove up to Mississippi excitedly to meet our new baby boy.
We met the social worker just over the state line in Mississippi. We both watched nervously as she opened the door to the minivan and laid our eyes on our baby boy for the very first time. We sat together as a family for the first time in the restaurant. Meeting Ryan was love at first sight. We oohed and ahhed over our baby boy for a few hours, feeding him and talking to him sweetly while we eagerly went over the details of the next few whirlwind days – traveling to finalize the adoption and fly home to Connecticut just in time for New Years.
Our first few days at home were everything we had hoped for. Ryan was perfect – tiny and angelic and handsome, with the brightest, most expressive, gorgeous brown eyes you’ve ever seen. We weren’t sleeping much of course, but we were so thrilled for our new addition to the family that we didn’t mind in the least. We were thrilled to be parents for a second time, and felt so blessed for the opportunity to have Ryan in our lives.
Unfortunately, it didn’t take long for Ryan’s medical issues to surface. After our first stay in the hospital, we left thinking Ryan had a simple infection that had been cleared up and that he should be fine from that point on. However, when more blisters formed, we began the long journey to find out what was wrong, and with every hospital visit and doctor appointment, we learned more about Ryan’s condition and ultimately his prognosis. In the last two weeks of Ryan’s life, while we knew the very real possibility that the outcome of Ryan’s condition would be fatal, we did everything we possibly could to care for him and make sure he got the very best possible medical care. In fact, things were looking up a bit in the last few days of Ryan’s life. He was eating well, he was gaining weight, and he seemed more comfortable than he ever had. Unfortunately, we could not see inside him, and even though the outward signs were improving, there was no escaping his fate. We were all blessed that Ryan left this earth peacefully. He simply went to sleep and didn’t wake up.
We will forever remember the precious few happy moments of Ryan’s life. One of the best moments we could ever feel is when he would look up at us with his big brown eyes while holding him and give the best smile – ever so fleeting, but it would melt anyone’s heart nonetheless. We’re also forever grateful to Jenny and Scott. One day, Spencer and Lila were supposed to go to get their pictures taken, and at the last minute, they convinced us to bring Ryan, too. Going someplace other than a doctor’s appointment with Ryan was unthinkable just a few days before, but since Ryan had been doing so well, we decided to give it a shot. We’re so glad we brought him, because Ryan did great, and the pictures came out amazing. We now have some great pictures of him, as well as of all of us as a family, that we will cherish and have forever to honor his memory.
In a final blessing, on Ryan’s last day on earth, the weather turned beautiful after a long cold, wet streak. At the same time Mary Ellen and I both had the idea to take the kids on a walk. The sun was shining, the temperature was just perfect, and Ryan enjoyed the fresh air as his crazy big brother ran around the stroller. We are so grateful that that perfect and lovely family walk will forever be one of our last memories of Ryan.
Though Ryan’s life was far too short, he certainly had an outsized impact. Ryan taught us much about ourselves, as well as others and the world around us. It is a cliché, but he certainly taught us that life is short, and you do really have to cherish every day. He also taught us that nothing is more important than family and friends. You should love like there is no tomorrow, because you just never know…
In our darkest days we also saw firsthand how amazing and wonderful it is to have great friends and family – so many continually dropped everything at a moment’s notice to help when we needed them most. Even our pediatrician went above and beyond as he constantly checked in on Ryan. To all of you, a most sincere thank you. There are not enough words to express our gratitude.
Ryan may have had only a brief 80 days in this life, but we will remember and love him always. He was a ray of sunshine in our lives and we are blessed to have been his parents.
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