Uncle David

Three years ago today, on a crisp autumn day about a week before Halloween, I got a phone call I suspected would be coming, but did not want to hear.  My Uncle, David Alton Eno, had passed away.  

Not every family is lucky enough to have an Uncle David.  In fact, only one in every 691 babies in the world is born like him: he had Down Syndrome, and he was amazing. 

David was born during a time when mothers who gave birth to babies with Down Syndrome were encouraged to place their children in institutions.  The "burden" of raising such a child would be far too much for the mother to handle, they would say.  Not for Grandma.  She raised my father, my Uncle, and cared for a husband who was wheelchair bound.  I love looking at old pictures of him: laughing as he opens up a Christmas present, smiling ear to ear as he graduated high school, and standing with the rest of the family in their polyester bell bottoms and wing collar shirts.  

 

When I was growing up, my Grandma, Grandpa, and David lived in a cozy house that was only a five minute bike ride from ours.  I was over there many times, not just at holidays, but at least once every two weeks or so.  Speaking of holidays though, they were David's favorite.  If he had a vacation day he would happily exclaim "home tomorrow!"  (He worked through a local MRDD program)  He always knew whose birthday was coming up next and would announce it to everyone.

 

Traditions are very important to our family, and David was no exception.  On birthdays, he would put on his straw cowboy hat (seeing similar ones at thrift stores and yard sales still makes me lose composure for a moment) and hold the cake with its lit candles, walking into the room as we all sang Happy Birthday to the lucky celebrant.  At Christmas, he liked to play Santa, handing out the gifts one at a time to each person, although he usually needed some help to read the names on the wrapped packages.  He and my dad were true brothers, and would often start out the wrapping paper wars, throwing them across the room at each other.  After a while, David's shout of "mom!  He bothering me!!" would make us all chuckle.  Traditions.

Every Christmas season, Grandma would also ask David what he wanted for the holidays.  Since David was sometimes hard to understand when he spoke, he would draw her a picture to give to Santa.  Sometimes the picture on the paper would be as simple as an American flag t-shirt (the year was 9/11), and sometimes it was as elaborate as a new drum set.  Whatever was on that paper, Santa always delivered.  

David loved bowling, the classic TV show Batman, Wizard of Oz, and dancing.  Whenever he received a gift at Christmas that played music, he would immediately get a serious look of concentration on his face, clenching his small hands into tight fists, and start bobbing and rocking to the music.  Occasionally as we all laughed in good fun, he would grab my or my sisters' hands and we would get up to bob and sway with him, holding hands.  

I don't want you to think that my Uncle David was a saint.  He got angry every now and then like anyone would.   He was afraid of certain things like getting his hair cut, or walking up bleachers.  He was human.  But he added something to the lives of every single member of our family that was completely invaluable and entirely irreplaceable.  David was forever reminding everyone around him about how to embrace the moment, how to celebrate fully, and how to just be joyous. 

In his final years, David developed Alzheimer's, a not-uncommon problem among people with Down Syndrome who survive to late middle age.  He grew thinner, increasingly confused, and had physical complications also associated with the disease.  On the last occasion my husband and I got to see David (my husband, Tom, was lucky enough to know him before the disease had progressed, and knew what a remarkable human being he was), we had a hard time getting any sort of reaction from him as he laid in his bed.  Right before we left, we both gave him a massive hug, and Tom squeezed his hand and told him that Spider-man was better than Batman (a joke they had between them).  I saw David's face crinkle into a small grin, and he gripped Tom's hand tightly for a moment.

My favorite memory, and one I shared at his funeral, was when Grandma and David came up to cheer me on, along with mom, dad, and Tom, when I ran my first (and only!) 5k race.  When the race was over, and we all stood around my parents' van saying hellos and goodbyes, some peppy song came on the loudspeakers, and David grabbed both of my hands for a dance.

 


My dad had a camera to snap a few pictures of the event, and somehow the camera was set on video instead of photo.  The mistake was quickly corrected, but what remained was a five-second sliver of video, one I'll always cherish, of the last time I danced with David.

There will never be another David Alton Eno.  His passing has been the hardest in my blessed lifetime thus far.  I still lose my breath and have to stop to clear the tears from my eyes if I see a grown man with Down Syndrome unexpectedly in my daily life.  The pangs of missing his gentle presence are further between, but still definitely present as time goes on.  Three years and one month ago, my sister gave birth to a sweet, wonderful baby girl, born with Down Syndrome.  Since my sister and her family live many hours away, I haven't had the chance to see her or the rest of the family as often as I would like to.  But when I see her in person, and in photos, I am struck not only by how different she is from David, how much she is her own person, but every now and then in little things she does, little words, little gestures, I see him for a moment again, and I feel nothing but blessed.

To have known someone, and loved someone so very much, with Down Syndrome, is a very very special and unique thing.  But David was also so very much more than his condition...he was a singular force of life, and one that will never be forgotten.

I love you, Uncle David.  Thank you for dancing through my life.