Virgil wrote in The Aeneid, "it is easy to go down into Hell; night and day the fates of dark death stand wide; but to climb back up again, to retrace one's steps to the open air, there lies the problem, the difficult task." Each day, I work with families walking through their very own definition of this darkness. However, no matter how difficult the trials, decisions, and steps are...they are relentlessly climbing towards an unwavering hope for a miracle to happen.
Throughout the ten years I spent volunteering in emergency medical services, working in medical transports and the last four and a half years of running Gracie's Gowns, I have learned that life is perfectly imperfect. Hardships bring out the best in the world, and despite the pain and heartache that is associated with them...the most amazing things can happen. The world becomes a much smaller place as "well-seasoned" families reach out to those receiving a diagnosis for the first-time, life-long friends are made within the hospital setting that continue outside of it, grieving families are surrounded by those that have already buried their child, and no one is left to fight their battles alone as communities surround them in not only prayers and well-wishes, but even making the sweetest of memories happen. Out from the ashes comes something so comforting and special that no one can really explain with words, it is something that can only be felt.
Families that have children with complex medical needs really reside in a world of their own. The challenges faced are not for the faint at heart, the vicious cycle of triumphs and setbacks not only take an emotional toll on families, but can indeed cause physical complications as well. Yet, there is a voice inside them that says to keep trying, because despite the statistics and the grim outlook they may have been given, there is still hope to defy those odds. Where they get this strength, determination, and passion I don't know, but because of it thousands are inspired to continue fighting one minute at a time. Many parents make life and death decisions alongside of their child's care team because while the doctors, nurses, therapists, and everyone else may have the medical experience behind the treatments, medications, and surgeries, they know their child better than anyone else does. I personally have never seen a time while following the children gowns have been made for where a family has not become the medical expert on their own child. It is in these scenarios where parents have quite literally helped save their child's life...and I sincerely hope they do take some credit for it as well.
Yes, I have a child with autism that has not only allowed me to see first-hand inside the world of children with complex medical needs, it has allowed me to see miracles happen as well. I was told the day of his diagnosis that he would never be able to imaginatively play, that he would never be able to function within a regular school, that we'd be lucky to have normal conversations, and the list goes on and on. The outlook was terribly pessimistic and my emotions were all over the place, but once we got back into the car and I looked at all the responses to my Facebook status of utter despair...I knew we weren't alone, that everything would be okay no matter what happened next, that despite everything I was just told there was hope we could prove them all wrong. After years of therapy, special education services, evaluations, and goodness knows everything else...he not only plays imaginatively on his own, he draws pictures, is highly social, is in a public-school setting, and though he knows he is different, and even struggles inside the school setting with peers and academics progress is made every day.
These children Gracie's Gowns has made gowns for are walking miracles...most are lucky to be alive, much less actually attending school, playing sports, and living to become adults with children of their own. Medical technologies have advanced so much, but I firmly believe it is the support, hard work, and hope these families have every day that open the doors for such wonderful moments. To the parents of the children I've made gowns for...and to your children as well...you are amazing NEVER forget that. Without you, there wouldn't be a Gracie's Gowns. We wouldn't have a purpose, and my life would have never been changed in such an amazing fashion. You all are the inspiration behind everything that is done...I'm just the person creating the gowns and while I absolutely love what I do, and see nothing else compare to the honor it brings my life, I couldn't do it without seeing your courage, and being inspired by the hope you have for many more tomorrows.