My Wonderful Walls Blog — Garden Mural
Ella Lives Each Day to the Fullest in Her Garden Themed Bedroom 13
For most of our customers when planning a room mural for their children or grandchildren, their thoughts are of how wonderful it will be watching the child grow with the room. For many they pick out the design they did for the simple fact it can last through babyhood into toddler years and beyond. But for one family, raising a medically fragile child means just taking each day as it comes and making the most of it. Recently, we learned of the struggle one of our young customers in Massachusetts has been dealing with and how her grandparents wanted to give her an over the top room that would give her a special space to play and rest.
Penny and her husband Chris raised five children together including two that they adopted from Russia. When one of their daughters was unable to raise her own daughter, Ella, Penny and Chris gained guardianship and later adopted Ella. Unfortunately, the road for Ella has been a rough one since birth. When Ella was born and still in the hospital, she was misdiagnosed with an eye condition called Aniridia later in 2015 they found out it was actually Congenital Mydriasis. In this condition the iris muscle doesn’t contract so the eye stays fully dilated at all times. At three months old after a period of being very irritable and not eating much Ella underwent an endoscopy but during the procedure went into total heart failure. The next day she was moved to Children’s Hospital in Boston. They found a giant hole in her heart called an AP Window. A few days later, once they stabilized her and had a plan, the doctors performed open heart surgery.
About two years later Ella was also diagnosed with severe sleep apnea. But after surgery to remove her adenoids and shave down her tonsils, she seemed to be doing much better and began to thrive. That all changed on Saturday September 12, 2015 at 3:30 in the morning. The night before, Ella had a small fever and Penny treated it with alternating Tylenol and Ibuprofen. Ella seemed to be in good spirits when she awoke, still feverish during the early hours Saturday morning. She was excited by the thought of being up with a snack, juice and a movie in the middle of the night. A few minutes later, Ella told Penny she was going to be sick and as Penny brought her into the bathroom, Ella collapsed. Penny quickly realized Ella was paralyzed on her right side and couldn’t speak. She knew Ella had had a stroke.
After treatment both at their local hospital and Children’s Hospital, it was both confirmed that Ella had a stroke and suspected that she had a genetic mutation causing Multisystemic Smooth Muscle Dysfunction Syndrome. Later a blood test would prove that was the case. Unfortunately, Ella’s condition has been progressing. Her right coronary artery is blocked 100% and her left is partially blocked making it necessary to have brain bypass surgery. Penny and Chris have been told if the disease continues to progress like this, Ella could start to stroke again. They know that this could happen as soon as tomorrow or maybe in a couple of years. With so little known about Multisystemic Smooth Muscle Dysfunction Syndrome, the doctors simply do not have a lot of answers. Penny and Chris and their entire family hold out hope but are also realistic. Ella will be having a brain angiogram before the first of the year to give her doctors better imaging and more answers hopefully.
Even in the midst of all this, Ella is a beautiful, happy little girl. Penny says that Ella has deep understanding and empathy for others. She makes friends quickly, is patient and accepting of children who find it hard to fit in. She loves to play dress up, princess and tea party. Penny and Ella spend a lot of time doing artwork and hanging out in the garden or the kitchen. Pink is Ella’s favorite color and she loves anything covered in glitter or that sparkles. She recently started her second year of Pre-K and is overall doing well.
Penny wanted to create a space that allows Ella’s imagination to run free and that was inviting for others to join in and play. Since Ella has a lot of restrictions on her activity because of her condition and being on blood thinners, she misses out on some things a healthy little girl usually gets to take part in. Penny wanted her to have a space that would let her be a princess one minute and a mom feeding a baby the next. She wanted Ella to have room to read and rest or sit to do crafts and a theme to make it cohesive. When Penny searched for flower stencils on Google, she found My Wonderful Walls and was happily surprised to find out we also sold wall stickers. The fact that she wouldn’t have to paint a flower garden for Ella won Penny over. There are lots of special touches around the room like the loft bed with a play place for Ella underneath and a My Wonderful Walls personalized pillow that matches Ella’s garden decals. Penny even purchased some extra stickers to really go a bit over the top when decorating.
The only trouble Penny had with using the decals was when she attempted to apply the large tree decals to the walls alone. She told us, “I was advised when I purchased the set, to get help for the trees. But me being me couldn’t resist attempting it on my own. At which point I created a big mess of branches sticking to one another. But great news if you should too decide to become an idiot like myself, it was easy to unstick the branches from themselves and onto the wall.” Penny reports that the decals look like they’re painted on and that you can’t really tell they are decals. She has had nothing but compliments.
Just talking to Penny briefly it is easy to see how much she loves Ella and how educated she has become on a very rare disease. There are less than 40 people worldwide with the genetic mutation that causes Multisystemic Smooth Muscle Dysfunction Syndrome. This particular syndrome effects all of the smooth muscle. The bowel, bladder, lungs, eyes, heart, brain and vascular structure. Every patient is different and only some of these patients have the brain complication such as Ella.
Penny said it best when she told us, “We all are predisposed to believing we will have a long healthy life in front of us and live in that illusion. Some of us dream that we will get married, have children, watch those children grow into beautiful beings and start their own families. Yet there are a million sayings about tomorrow not being promised. My husband Chris and I, have put aside our expectations of what the future will look like and live free in the moment. For we are truly blessed for TODAY!”
For more information about this syndrome and in particular the risk for Aortic Dissection and Aneurysms, check out The John Ritter Foundation page.
Annual Giving Garden Mural Growing at The Centers at St. Camillus 0
If you have ever worked at a non-profit or been involved with fundraising for your child’s school, scout troop or sports team, you know how hard it can be to find new and exciting ways to raise money. So when we were contacted by Michael Connor, Relationship Development Coordinator, at The Centers at St. Camillus in Syracuse, NY about using our garden wall decals in an effort to secure donors via an “Annual Giving Garden” we thought that was pretty genius. The folks at St. Camillus have not only created a beautiful mural throughout the halls of their center but have created a vehicle through which donors can give year after year and keep the garden growing! With messages of love and remembrance, this Annual Giving Garden has been a big hit with patients, families and staff alike.
The Centers at St. Camillus is a not-for-profit health care community offering comprehensive inpatient, outpatient and home care services, including brain injury rehabilitation, continuing care, subacute rehab, outpatient therapies, medical transport, adult day health services and more. Since its founding in 1969, St. Camillus has been a leader in rehabilitative health care dedicated to caring for life. In his role as Relationship Development Coordinator, Michael was tasked with developing a giving program for individuals, families and other groups. The challenge was to create the opportunity for donors to give more than once. Michael and his team also wanted to create something visual and uplifting. They chose to use a garden theme because of the universal appeal of flowers and nature and the power a garden can have to inspire and add to the overall quality of life of patients, families and staff.
The team initially purchased the entire Splendid Garden Wall Sticker Kit to get started. They also chose a handful of My Wonderful Walls design elements (with our permission of course) to develop a direct mail brochure to contact potential donors who had given to St. Camillus within the last three years. There are five levels of giving, from $50 leafs and $100 flowers to $1,000+ tree flowers. Once they had attracted their first 20 donors, Michael special ordered leaves and flowers from the Splendid Garden Wall Sticker designs personalized with either the donor’s name, or in honor of, or in memory of someone special to the donor. With their Annual Giving Garden, St. Camillus established that donors’ personalized leaves or flowers will remain in the garden for one year, and that by renewing their gift each year, donors can ensure that their leaf or flower remains in the garden annually. People have donated in memory of loved ones passed, in honor of staff or in celebration of their family as shown in some of the photos here.
Michael and the rest of the Marketing Department with the help of the Maintenance Department created the first garden in about a week working on it an hour or two every other day or so to let the up to three coats of background sky and grass, as well as frame paints to dry. He told us, “The actual stickers went up lickety-split, even though we had many of them and there were three of us placing them on the wall (which led to occasional friendly differences of opinion!)”. The team found the wall stickers very durable and forgiving if removed and repositioned on the wall.
Space in their original Annual Giving Garden mural (four feet high by 11 feet wide) was fast becoming a
premium, so they added two more, slightly smaller wall gardens just down the hall. After having created the first garden, the subsequent garden murals were even quicker to put up. Their third order to My Wonderful Walls included 18 more leaf and flower decals personalized for donors, as well as several additional elements from both the Splendid Garden and Forest Friends Wall Sticker designs to help complete the look of all three gardens. And a fourth order was well on its way to St. Camillus as this blog post was being written.
So far the center has already reached 85% of their Annual Giving Garden fundraising goal with the remainder of the year left to meet their goal or perhaps surpass it. They consider this an ongoing initiative and strive to keep the garden growing. The reviews from families, patients and staff about the garden mural have been very positive and remarks like “how beautiful” and “what a great idea!” can be heard in the halls. The best result is that the garden immediately uplifts everyone’s spirit, and sparks a multitude of meaningful, engaging conversations between generations of viewers.
When asked what he liked best about this project, Michael said, “It’s a three-way tie between the beautiful 3D fabric designs, the affordability, and the terrific customer service we’ve received all along the way from the staff at My Wonderful Walls. They truly took a special interest in us and our new project from the beginning; they felt like a partner in the project, and wanted us to succeed. From the way I’ve answered this question, I suppose it’s My Wonderful Walls’ customer service, after all!” Which is of course what we strive for every day! We are honored to be a small part of such a wonderful project and worthy cause.
If you or someone you know would like to support the Annual Giving Garden at The Centers at St. Camillus please visit their website for more information or call Michael at (315) 703-0822.
Blog post written by Tara