THE MOSLEY CLAN at this year’s Colin Farrell Foundation Winter Ball, which was covered by Good Morning America. From left, Marianne, Gary, Emily, Farrell, and Elizabeth and Michael Ethington (Michael grew up in Versailles). (Screen shot by Scott White)
I’ve been thinking about angels a lot. And it is not just because it is Christmas with all the “Ho, Ho, Ho” and mistletoe. Or the ubiquitous Santa, or the terrific parade, or the peppermint mocha at Amsden, or the cool, new roofline lights just in time for the holidays or our chubby tree next to the courthouse.
I love all of those things, and just about everything else associated with this season.
Angels are a big deal in my family. Soon after my sister Marianne (Missy White, WCHS class of ‘79) was born, our Uncle Bill started a tradition of giving her an angel every year for Christmas, leading to a lifetime of collecting them. I bet her favorites are the ones Uncle Bill gave her.
But, I’m thinking about real angels. Like the one that appeared to the shepherds in the Christmas Story to calm their fears. Who proclaimed the Good News of the birth of a Christ who dared be born in a manger to a woman who became pregnant out of wedlock, whose putative father was not royalty, but working class. The one who Jackson Browne sang of as, “the birth of the rebel Jesus.”
If, like me, you are a Christian, it’s kind of hard to write angels off as make-believe. It’s one of those, “you either believe or you don’t” things.
Well, I believe.
A few years ago, angels were all the rage. There were books on how to spot them, talk to them and obtain guidance from them. They became the subjects of novels and movies and even “New Age-y” kind of stuff. There was a whole cultural zeitgeist, much of which has persisted. Everyone seemed to want to believe they were real.
I’m here to tell you they are. And, not just the ones we find in the Bible, Koran and Torah. My niece Emily is one, and my sister along with her husband Gary and another daughter Elisabeth and her husband Michael are near ones too.
I remember when Emily was born . . . she was the first grandchild and everyone was bonkers in welcoming her to the family. It was 1989 and I was practicing law in Charlotte, North Carolina, and drove home. Lord, she was, and is, so adorable. The next generation had arrived.
But, soon, it became obvious Emily wasn’t developing “normally” . . . not hitting milestones, things like that. The pediatricians all said, “Don’t worry, she is just a little delayed. She’ll catch up.”
Well, that lasted and lasted. Marianne and Gary were living in a kind of nether world, knowing something was wrong with their dear child and getting no answers. They even held off on having more children till they found answers. Fearing the worst. Questioning their faith. In the pre-internet age, scouring articles, getting referrals and requesting testing. Nothing . . . until after battling insurance companies and Emily’s primary care providers, she was finally approved for genetic testing. The mystery, which had been prolonged to the point of torture, was solved.
Emily was born with a rare condition known as Angelman’s Syndrome . . . the kind of condition that not that many years ago, and too often today, lands the person, a human being, a child of God, in a state institution or nursing home. Twenty years ago, they would be called “profoundly retarded,” unable to walk, communicate, feed themselves . . . you get it. They, and often their families, became isolated.
The Mayo Clinic antiseptically defines Angelman’s as “a condition caused by a change in a gene, called a genetic change. Angelman’s causes delayed development, problems with speech and balance, significant cognitive disability and seizures.” Named for the English pediatrician who in the late 1960s identified children in his practice with similar physical and clinical characteristics, it is also characterized by a happy, smiling, laughing demeanor. People with Angelman’s tend to live close to a typical lifespan. But there is no cure . . . treatment focuses on managing medical, developmental and living issues.
Marianne’s family soon learned they were in a never-ending battle for Emily to be treated with respect, dignity . . . to be afforded the rights of any American, the opportunity for a full, meaningful life. Marianne’s has been a life of advocacy . . . battling insurers, school systems, governmental agencies, stares, awkward moments in public and often unrelenting stress and anxiety.
Having an Angelman’s child impacts everything. I’m her brother, we are close, and I still cannot fathom what it is like.
But despite all of this, Emily is an angel. She has a unique personality. She exudes unconditional love. She adores the candy, Dots. Disney World is her happy place. She pinches when you aren’t giving her enough attention. She is addicted to her iPad with her favorite movies and shows. The pure joy on her face when she dances with Gary. She loved being a student in the Jessamine County school system, graduating at age 21 from West Jessamine. There is so much more to say, as any of us can about a member of our family.
Like many Angelman’s families, a whole new set of challenges emerged when Emily turned 21. She was no longer able to go to school. What few programs exist to provide one-on-one care, which she requires, have years-long waiting lists and if you do get a slot, finding qualified caregivers is extremely difficult, and, in Emily’s case, day programs won’t accept people who need significant support. Marianne describes it “as falling off a cliff.” Now, as an adult, it is as if they are living on a desert island in the middle of Nicholasville.
Marianne shares, “Emily’s needs are so significant I had to quit full-time work when she aged out of school because no adult day program in our area would not accept her because she needs too much one-on-one attention. Even though she would come with (ample) Medicaid money, it’s not enough for them to make a profit . . . we are in what I would call a desperate situation that not everyone with an intellectual or developmental diagnosis faces (given its rarity as compared to, say, Down’s Syndrome with a much larger population and resource pool). And, we are so invisible.”
Beyond “thoughts and prayers,” Emily’s needs, much less her wants, are substantial. Fortunately, as Angelman’s becomes more known, there are specific foundations, which fund research, provide important information, and foster community. .
Perhaps more significant is the Colin Farrell Foundation. One of the most well-known movie stars today, Farrell’s oldest son, James, has Angelman’s Syndrome. Since James turned 21, Farrell is now aware of the “cliff” . . . and, so he says this foundation “is focused on transforming the lives of individuals and families living with (Angelman’s) through education, awareness, advocacy, and innovative programs . . . we are dedicated to supporting those who the larger systems of governance have neglected.”
In concrete terms, this includes: housing and day programs; workforce support for direct support professionals; advocacy for funding and policy change; and, operating Camp Solas. They even host a Winter Ball in Chicago where families attend, cost-free, over a weekend in Chicago. Emily made such an impression on Farrell that a picture of the two of them is prominent on the Foundation’s website.
“I am beyond grateful there is finally an organization that is focused on people like my daughter,” said Marianne.
This column is not a plea for charitable donations . . . though this would be terrific and you can do that at colinfarrellfoundation.org. Rather, I just wanted to share a bit about my angels. And, instead, ask you to consider reading more about Angelman’s on that website or angelman.org. Write a letter to Congressman Andy Barr, Senators Mitch McConnell and Rand Paul, State Senator Amanda Mays Bledsoe, and State Rep. Dan Fister asking them to support funding and other laws that flatten the cliff for Emily and her peers.
I am 100 percent sure my representatives and senators, state and federal, would be nice to Emily if they met. But I want them to put the money where their mouths are. I want them to believe Emily DESERVES to live with dignity and meaning, and will do what they can to help her achieve that.