Before we go into the big things we're working on, we want to take a second to say how grateful we are for the community that has come forward and supported our organization: from those that have supported Addy during her fight to new friends who support our vision. We have been more than blessed to have each of you. Addy's Colors will only be as beautiful as those who have supported us, and looking at all of you who have come forward, it's going to be absolutely amazing. My heart is overflowing with gratitude. We thank you all so much.
This month's newsletter is going to be a long one, so hold tight!
Our 501(c) case was officially opened on July 1, 2019! We're anxiously awaiting our determination letter, but we could be waiting awhile. The process can take anywhere from three to six months! I'm checking the mail everyday... and the IRS website. Have I mentioned I'm anxious to hear back?
As we "patiently" wait for the determination letter, we've been busy. I have two absolutely amazing people who came forward to help build our beautiful organization: June Haislip and Jessica Jackson. As of right now, our directors are all volunteers who have come forward to help us grow. We couldn't do this without them, so I'd like to share a little about each of us in this newsletter.
Our Amazing Staff!
June Haislip is an ordained pastor and dear friend of mine. Full of vision, she's always searched for new ways to serve our community. I knew right away that our organization would grow beyond my wildest dreams with her as our program director. She has a gift to see where communities need extra support, and she has vision to establish ways to fill the gap. I'm so grateful that she accepted to join our team. Working with her is an absolute joy.
Jessica Jackson is one of my closest friends and one of the most kind-hearted people I have met. She knew Addy very well, and at the same time that Addy was fighting her battle with cancer, so was Jessica's father, Bruce. He passed only a short time after Addy. In his honor, we have named the equine program the Bruce Walker Memorial Equine-Assisted Program (BMW Equine Program). Jessica is so unbelievably creative that sometimes it blows me away, which serves her well as our development director. Her kindness is beyond measure, and she has a heart that wants to help and support the community we serve.
Then there is myself, Amanda Ashburn, a qualified mental health professional for children, lover of yoga and dogs, grant writer, marketing wiz, and bereaved cancer mom serving as the founder and executive director.
My vision for Addy's Colors came from my daughter's fight with adrenal cancer in 2017. She would cling to her "colors", markers and crayons that she carried throughout her journey at St. Jude. I realized how important it was for her to get out of the hospital. Our short visits to the zoo or our breaks to
do something fun (like carving and painting pumpkins at Halloween, the gingerbread houses we made at Christmas, endless nights painting our nails) were so important. These were the moments that Addy would light up. It was when I saw the little girl before cancer. It is now the moments I treasure most.
The Big Picture!
Throughout much of my life and college work, I was drawn to the idea of a "holistic" approach to treatment that takes the mind, body, and spirit into consideration. Everything clicked when Addy became ill. Children need not just the medical care, but also integrative therapies - the parts that are good for their mind, that make them smile, and that relieve the constant stress of appointments and illness. Caregivers need to be able to take a breath to release the constant stress and whirlwind of emotion of caring for a child who is ill.
From this, a vision was born: a place where children can come to be celebrated as a child - not a diagnosis. A place where children can go to summer camp, have weekend retreats, spend the day relaxing and having fun, get integrative and evidence based therapies to their treatment that is coordinated with their doctors, and all in one central place. A place where they can learn life skills in a fun way and caregivers can get free classes on everything from self-care to nutrition. A safe place to land for caregivers and bereaved families without judgment or "fixing" them. A place full of love, nature, and color. All for free to families. Because medical bills are enough - families shouldn't have to pay for these moments to grow or relax mentally and physically. And here we are!
What makes us different than other summer camps? We are an hour from both major hospitals for children, keeping children much closer to their parents and doctors. It is also completely free and open to different diagnoses, including bereavement, and includes field trips to local baseball games, equine therapy, qualified mental health professionals (who serve as mental health monitors as well as bringing fun activities to children as educated through the Gesundheit Institute), and more. My proposal has a summer staff of nurses to give medications and a medical director overseeing all medical needs and training for volunteer counselors (whom we're hoping to be able to partner with colleges to provide class credit for their work and training in the medical field).
As for year-round integrative therapies, there are few other places that have added them for children - Sloan Kettering, Children's Hospital of Philadelphia, Columbia University, and CHOC in California - to name a few, but it has not become a major part of medical treatment... yet. Times are changing! Research has shown that integrative therapies have benefit in children's quality of life, social skills, physical abilities, cognitive and mental health, tolerance of treatments, and even in some cases, treatment effectiveness when complementary to (not in place of) modern medical treatment. Local hospitals have some of the therapies for some children at some times, but most families have to seek out integrative therapies in the community, collecting a hodge-podge of treatments that aren't coordinated with their medical providers. To complicate matters, research has shown that families have some reluctance in telling medical providers that they are using integrative therapies as they are still not widely accepted. That's a little scary! Without coordination, doctors, caregivers, and physicians can be doing more harm than good - pushing too much in physical therapies, utilizing supplements that can be harmful, or mental health therapies that are contradictory or even overwhelming... just to name a few problems.
This is where we're a little different. We will offer activity therapies, mental health therapies, life-skills, and nutrition/exercise year around which will all be coordinated by a nurse with modern medical treatment providers. For example, if a child is working on something specific in physical therapy, we can integrate that into the equine, yoga, or dance/movement therapy coordinated by a care nurse. We'll also add in additional classes for more education and support, lots of fun activities, retreats and respite, and summer camp! All in one central place. Families can come for their appointments or just to spend the day swimming, fishing, having a picnic, zip-lining, and enjoying time together (with some extra hands when needed).
So, what integrative therapies are we considering? Art, dance/movement, equine-assisted, pet, music, mental health counseling, yoga and meditation/guided imagery, acupuncture, aquatic, nutrition/health, and life-skills in addition to support groups, retreats, adaptive sports, and camps. And not just for children - while a child is participating in equine therapy, the parent can get a massage. Why? Because whatever the caregiver is feeling is what the child is feeling - so, let's take care of both.
Is this ambitious? Yes. We're starting small... Step by step. Piece by piece. We'll build it over time with conscious effort and diligence - and a lot of love.
While we're waiting on our 501(c) status, we've been busy working on some of our programs.
One that we're very excited to talk about is a bereavement support group for parents who have lost children.
I wish this was something that never had to be created. My heart breaks more every time we hear of another family having to go through this in our small community. Compounding the issue, there's a lack of resources for parents who have lost children. Maybe, in my optimistic spirit, it's never been something we've had to confront before.
Now, it is.
Support groups are hours away, and only run once a month (others, every two months). As a bereaved parent myself, that wasn't okay. To drive hours away for something that was going to bring up a lot of emotions and then drive by myself back? To be right by the hospital where she was treated? And then to have to hold on through the waves of emotion until the next month? And what about direction - just talking about emotion after emotion with no direction or guidance seemed to make me worse. To be far away from the group of people who know how I feel only intensified my feelings of isolation.
June and I are now working on a better plan. Through research, books, curriculum (of which there are only a few), and consulting with the experts, we are compiling a bereavement program to hold grief support groups locally that are weekly programs with guidance, direction, and build a community of people who can lean on one another based on a foundation that is future-oriented, compassionate, and full of hope. We would include classes on self-care from stress management to nutrition and exercising. In the future, we hope to hold bereavement retreats and memorial programs once we have a facility. We'll extend this support group to forming one for children who have lost siblings or caregivers as well.
As we continue to work on development for the organization and facility plans, we've been working on our forms - procedures, policies, code of conduct, and others. To develop these, honestly, has been very fulfilling, although I didn't think it would be initially! Seeing a vision come to life on paper and to create something so beautiful, it seems almost surreal at times. I'm grateful for support from many business minds who have shared their years of knowledge as well.
I'm also happy to say that other facilities have been so helpful. A wonderful place in Colorado shared their adaptive zip line construction so we can have zip lines that are suitable and safe for children who are wheelchair bound. We also have found unique capabilities to allow waterproof wheelchairs to be lowered into a pool so that they can move in a safe end of the pool, rather than sit on the traditional hydraulic lifts unable to move freely. We've even have a special celebrity who would like to work with us to bring happiness and laughter to the children we work with. We are also in the process of consulting with one of the largest medical camp networks in the U.S. which provides guidance and networking for growth, knowledge, and an emphasis on providing top quality medical care (and fun!) for summer and weekend camps. We have quite a few other partnerships forming as well.
We've also been looking at potential spaces for our facility, and we believe we may have found one that is promising. Of course, it's going to take some fundraising, which we'll start once our 501(c) status has been approved. This place has over 70 acres of land, a barn and stable, fishing pond, beach, an orchard, an observatory room, hiking and horse trails, and much more for a very reasonable price. We
have a very unique and beautiful sponsorship plan that allows donors and sponsors to forever be seen as a supporter to our beautiful organization. We'll release more information once we get our determination letter... Come on IRS
Join our Vision!
We have formed an absolutely amazing board of directors. In September, I'll share all about each of them, so stay tuned. If you're interested in being on our board, please reach out to Amanda.
We thank you again for all of your support! We'll have more to share in September.
All of us at Addy's Colors