What do you do when life throws more than a curve ball?
The power of life in a small town is its sense of “village”. When we continually see one another on the street, bump elbows in the coffee shop and rub shoulders at potluck gatherings, it’s fairly easy to get to know each other– and in learning to know one another, we come to care about each other and discover within us, the ability and desire to support one another in the ways we each uniquely can.
You have probably seen Addy cruising First Fridays, the farmers market and our endless street parties. Addy is one of us, a Bonedalian. As a town, we are lucky to have Addy. Her infectious grin, indomitable spirit and tiny stature are invitation to each of us to slow down and connect. To value what is precious. And give, give, give of our hearts.
This is mamma Jen Moss’s story of Addy– Ed. GJV
Meet the Moss Family
By Jen Moss
Brent and I have lived in the valley for 20 years. Growing up in the Midwest, we each found our way to the beautiful town of Carbondale and have built our life, home, and businesses here. We have two children, Jax and Adele, and a loyal chocolate lab, Oly.
Many of you may know us already. And, if you do, you may know our heartfelt story concerning our daughter, Adele, lovingly known as Addy. Adele was named after my great grandmother, who was an amazing woman that lived life to its fullest and did things that would be considered way before her time. She was a hero to so many and is still highly regarded among multiple generations. Her legacy is one no one will ever forget. Adele was rightly named, as her drive, her attitude, and her will follows in Great Grandma Adele’s footsteps.
Addy is our amazing 3-year-old, with as much energy, enthusiasm, and drive as her 6-year-old brother, Jax, and her best bud, Oly. She runs, plays, sings, imagines, laughs, and totally makes others laugh with joy. To know Addy is to love her immediately and unconditionally.
Addy has 4H leukodystrophy.
She was diagnosed in May 2016, and that diagnosis was confirmed in July. Upon hearing those words, our world as we knew it, came crashing down. We had so many questions, there were so many unknowns, and in the forefront, we asked—what is Leukodystrophy.
What does this mean for our little girl?
Perhaps you’re asking yourself that same question, since leukodystrophy, and specifically 4H, is very rare. Leukodystrophies make of a group of rare genetic disorders that affect the central nervous system, disrupting the growth or maintenance of the myelin sheath, which insulates our nerve cells.
The disorders are progressive.
There is no cure for 4H syndrome.
Treatment is only supportive.
“4H” is short for hypomyelination (slow formation of myelin in the brain), hypogonadotropic hypogonadism (hormone deficiency) and hypodontia (slow or lack of tooth eruption). Three and half years young, Addy is mobile with the help of her walker. Without the walker, she crawls. She communicates utilizing sign or through her iPad communication device.
Starting at age 2, Addy’s been a willing, and sometimes not so willing, participant in physical, occupational, and speech therapies multiple days per week. She also began a new therapy through the Bridging Bionics Foundation helping her to build strength through stimulation and progressive new techniques.
Addy lives life to its fullest, and she loves nature. She’s happiest when she’s outdoors, exploring in the sun, rain, or snow—hot or cold. We created a nature preschool for her so that she was able to do these things with her wonderful teacher, Miss Annie, and her friends, Calvin and Tommy. Last year my mom and I started talking about fundraising for Addy, but for what, how would donations be used? It’s difficult to ask people to donate to something when it’s not tangible, so we came up with an idea of Addy’s Oasis, to turn our yard into a natural locale that is easily navigable for Addy, where she can do the things the other kids do, while utilizing the necessary medical devices she requires.
Imagine a yard of walkways where her walker doesn’t get stuck in the grass or mud, imagine a fence with fun and interactive (and therapeutic) games and toys, where she can reach and touch in the safety of her walker without falling. Providing Addy with a safe and therapeutically supportive haven to play with her friends, and to grow and nurture her love of the outdoors is a wish we have for our little girl.
Thanks to my brother, Brian, and his successful fund-raising efforts, over $15K in one month’s time, was raised—and we are ever grateful for the love, support, and generosity of so many that donated because now Addy’s Oasis is ready to be a reality. Living in the valley for so many years, we are blessed to know many talented landscapers, architects, designers and handy people to support and drive this initiative, and ensure we acquire the right “fun yet therapeutic” things for Addy so she can enjoy them now and in the future. Check out the most recent site plan for the Oasis and find out how you can help.
That’s Life: Silver Linings
When life throws you a curve ball, as it did in May 2016, you go through a grieving process. At first devastated and sad, then numb, then mad as hell. At some point while life is going on, we begin to understand that we, all of us, have to go on, too. Inside, all those other emotions are still stirring and eating away at your soul. But, for our family’s sake, we must be strong, and find the positive. My mom believes in silver linings, the glass half full, and I guess that’s a good way to help you move forward.
I would say our silver linings have been the people we’ve met through this dark and strenuous time. People we otherwise, might not have been blessed to know and have in our lives. Friends like Jan and Bob, Miss Annie, Francie, Amanda and the Bridging Bionics team, and so many more. We also would not be aware of leukodystrophy and the children and families we’ve connected with over the past year. The dedicated doctors that search for cures and therapists that support us with ways to help our children live comfortably and safely.
That’s Life: Not-so-Silver Linings
The not-so-silver lining, however, is the madness in state and federal government paperwork. While I’ve worked with some very kind people and staff that mean well, it has not been easy, and many days brought me to tears. It’s bad enough having to live through the nightmare of your child’s illness, but justifying why you need a walker, or special braces for her feet so she can walk and get around vs. crawling or be carried 24×7 is mind blowing. Understanding why a special needs child has special needs is basically what I had to do over and over and over and I expect will be doing for the rest of Addy’s life.
Not only does it seem redundant but think about the time it takes the state and federal employees to re-key all the data into the system every time. It took over a year to get Addy’s iPad, the device that would help her to communicate with the world. I had to re-file for that device 3 times. And her walker, she was getting so frustrated, because she wanted to walk and get around, and have her independence, like any 2-year old, yet the justification and approvals took many months. Silver lining, of course, a very happy girl the day she got her “legs.” The smile on her face and the proud feeling she had that she now could walk on her own, was worth a million.
Addy also wears an orthotic suit that helps her muscles work in line with her body movements. Each suit costs over $3000, but without it, she could not stand upright, or move her body in the way she needs to sit, stand, eat, play, and more. The suit is one piece and zippers for easy (well, as easy as can be) on/off access. To date, because she’s growing, she’s had 2 suits made for her. We are grateful for John at Western Slope Orthotics in Grand Junction that measure and order the suits, because they are truly one of the critical devices that Addy requires.
A Typical Day
As many of you know, Brent has his own business, Brent Moss Photography. As a professional architectural photographer, he’s often gone from sun-up to long past sundown. That’s the demand of the job, and when he’s not shooting, he’s in his office downloading film and preparing it for the client. I also own my own business, Jen Moss Design. I’m a graphic designer and have my office in my home. Because of the busy school schedules for both kids, and the multiple therapies a week for Addy, I’ve had to cut back my clientele, but I’ve been able to keep a few great clients, and they’re fabulous to work with.
Of course, the day is a typical day like most families, wake up before the kids and get work done, then fix breakfast, and start the day. We ensure a very nutritious and healthy lifestyle, both actively and in what we eat. One of Addy’s favorite things to do is help me make fresh juice in the morning. The tough part is ensuring she saves some for daddy and brother. She knows the exact vegetables she likes to drink, so she’ll help me get them from the refrigerator, to the counter, and then into the juicer. She also loves to eat and is very vocal about what she has a taste for. So, at any time, we better have that food in the house. Her favorite; yogurt and honey and fresh juice. We’re very proud of Addy, because unlike many children with leukodystrophy, Addy can sit up in her booster chair and feed herself (buckled in of course). For over a year, an occupational therapist, Cindy, came to the house once a week and worked with her on using a fork and spoon, on her posture when sitting, standing, playing, and more. So, taking for granted that a child picks up a spoon and fork and puts their food in their mouth is something we don’t do. We cherish these everyday acts and are grateful for the work Addy has put into learning, so she could be independent.
Addy attends Crystal River elementary school two half-days a week. During which time, along with learning with the other classmates, Addy has a speech, occupational, and a behavioral therapist work with her, as part of the state supported program. As well, she has physical and speech therapy in Glenwood Springs and Bridging Bionics therapy in Snowmass with the bonus of swimming at the end of the session. She also attends her nature school with Miss Annie 2 half-days per week, keeping active with all the outdoor activities she and her classmates love. They often visit Sustainable Settings, play at Park, and explore the grounds at True Nature. These make for full days for a 3-year old. And, of course, there is the Martial Arts, 2-days a week for brother at Rising Crane, after a full day of kindergarten at Carbondale Community School (and ski lessons during the winter season at Snowmass). So, it’s never a dull day at the Moss house.
A Big Thank You.
This is a hard story for us to tell but here it is. With this Oasis we are going to do what we do best–move on, simplify, and enjoy life. We hope you can do that with us too.