I vividly remember the first time I looked at the Crescent Cove website and learned that such an amazing place exists. I closed the door of my office at work, poured through the website, and started sobbing. I was a living definition of caregiver burnout at the time. Between home health home nursing call outs (and being regularly understaffed to begin with), hours of daily hands-on care, endless medical appointments and hospital visits, worrying about the future, working full time and being a single mom to my amazing little boy, I was at the end of my rope. Everything that Crescent Cove is and stands for, from the beauty and non-medical atmosphere to the focus on rest and respite for parents, was everything I was longing for without even realizing it. We made our first trip to Crescent Cove several months later. While the waiting and continued shortage of nurses and support was incredibly difficult, the hope of future respite, rejuvenation and peace at Crescent Cove helped keep me going each day.
I am the proud mother of the most courageous little boy there ever was. Salim is a complicated little guy medically, but his primary, most debilitating condition is called Recessive Dystrophic Epidermolysis Bullosa, or EB. His body doesn't produce any collagen 7, so his skin blisters or sloughs off entirely with the slightest touch. He has open wounds all over his body at all times, is in bandages neck to toe 24/7, and endures a painful 2-3 hour bath and bandage change almost daily. EB also affects him internally. He deals with so much every day; we both do. Before going to Crescent Cove, I wasn't sure how much I was going to be able to let go. EB is so rare that many, even in the medical field, have never even heard of it. It's hard for me to trust anyone with him. But upon arrival, I realized that Crescent Cove was different. For the very first time, I felt like I could let down my guard. I knew without a doubt that my boy was not only safe, but was loved and adored and having the time of his life. He spent an entire week with staff, nurses, CNAs and volunteers who spent hours playing with him, singing with him, arranging fun activities, and finding people to take him on boat rides. He spent more time laughing that week than doing anything else. We celebrated his 5th birthday at Crescent Cove, and everyone went so far out of their way to make sure it was the best birthday there ever was. The day was even topped off with a visit from the local fire station and firetruck, thanks to one of the home's amazing volunteers who took it upon himself to show up at the fire station and arrange it spur of the moment. It was a magical birthday. And when you're parenting a child whose birthdays will be limited, those celebrations are even more special and precious.
Salim and I are a unique Crescent Cove family. Unlike most families who utilize this magical place, we are not local. We live in North Carolina and fly halfway across the country to visit. While most parents leave their children in the loving hands of nurses and staff and return home or go on a trip, I spent my entire week with Salim in the home. And it gave me the unique gift of not only watching the ways that they interacted with my son, but with every child there. I witnessed the beauty of what it's like for every single child, regardless of ability, development, or cognitive level, to be treated like the most important and dignified person in the world. Full conversations were carried on with each child all day long, regardless of the child's ability to verbally respond or engage. Every child's emotions, opinions, and preferences were seen, heard and responded to. This isn't a show put on for cameras, supervisors, or parents. The staff genuinely adore their jobs and the children they count themselves blessed to care for. They are some of the most committed and dedicated people I've ever had the privilege of meeting.
Crescent Cove is unlike any place I have ever been or even dreamed of. Families of children with complex and life-limiting medical conditions become acclimated to a certain level of stress and anxiety. It is usually quite unhealthy. Personally, I did not even realize how much stress I was carrying around with me on a daily basis until I spent a few days at Crescent Cove and felt it all fall off my shoulders. It is my fear, however, that so many families will never get to experience that feeling of stress and anxieties melting away because homes like Crescent Cove are so limited. There is such a huge need, and the fact that Crescent Cove is only the 3rd home of its kind in our country is devastating. I am so grateful for the ways in which the entire Crescent Cove community has touched and shaped my family. I am also extremely grateful for Crescent Cove's commitment to keeping services free for all families, for opening their doors to any child across the country with a life-limiting illness, and for the donors who make it all possible. I pray and hope for a cure for EB every day. Until that day comes, I am blessed to know that the team at Crescent Cove is in our corner, here to love and support us through it.