Seventy nine years ago, my Dad was born. June 13, 1933. He always joked with a mischievous grin, that Friday the 13th wasn't unlucky for him.
It has been 3 years, this past April, since my Dad's light, and laugh, left this world. One of the things doctors don't prepare us for, when they hand an autoimmune diagnosis to a child, is the domino effect it can have. Where there is a child smoldering with an autoimmune illness, there is typically a family of missed, or mistakenly diagnosed adults who's health is about to burst into flames.
That is how it happened for us. My Dad had liver disease for years, but it was wrongly diagnosed as being related to a bout of hepatitis from one of his extended trips to Jakarta. During the time in 2005, that Beanie was being worked up to find the cause of her 'failure to thrive', my Dad was being worked up for surgery on a tumor in his very badly damaged liver. We were five weeks into our life gluten free to treat celiac disease, when I flew to Florida to be with my parents for his surgery. The surgeon reported that based on the surgical pre-test, that my Dad had never had hepatitis. There were no antibodies present in his liver. What caused thirty years of elevated liver enzymes ending in cancer then?
'Autoimmune Liver Disease'
There was that word again, autoimmune. We suddenly went from a family with a clean health record, to one barely hanging on the fringe wondering when the next shoe would drop, and over the following years plenty did. But this post is about my Dad, and his life.
Dad would have loved Sweden. I imagine what it would be like if he were alive to visit this Summer with my Mom. Taking the girls fishing, or trying to keep up with them on their bikes with him on his roller blades, on all the paved trails around the house. Showing them his latest magic trick. Entertaining KC with his ocarina, and much to our auditory chagrin, showing her the basic fingering, and making sure she had one of her own before he left the country. Teaching any willing student the basic, or finer points, of his favorite games, tennis and chess.
I have to admit that my eyes have been leaking as I've been writing this post. Maybe it's the anniversary of his birth. Maybe it's not having his enthusiasm to pull me through the rough spots of expat living. Maybe it is the loss of my last living 'Uncle' earlier this Spring. Or maybe it's my father in laws illness, and experiencing the awkward, excruciating, sweetness, of living and loving in the shadow of Good-bye. Trying to enjoy every moment without harping on thoughts that it will be ending too soon. Sooner that anticipated. Always sooner than what you hoped for. It is probably a little of them all.
I keep thinking, that the grief should be gone now, but recently we went to the Swedish amusement park Gröna Lund. We haven't been to an amusement park since the Teen was four, and we went to Disney World with my parents. Dad went on every ride, and introduced her to all his favorite characters. As we walked with our now four year old KC asleep in the stroller we approached the Gröna Lund equivalent to the Dumbo ride.
Before I even knew what hit me, I was swept into a vivid memory. Dad and the then four year old Teen, his first grandchild, floating up and down waving each time they passed behind the enormous ears of that cartoon elephant. Like it was yesterday. When I breathed again, I was clinging onto Finance Guy's arm, tears stinging my eyes. The wave of grief came so fast, out of the clear blue. KC will never know the joy of Papa's laugh, or the comfort of holding his hand, or how it feels to float on a colorful elephant with that man beside her.
"Autoimmune immune liver disease. Celiac Disease immune-mediated enteropothy"
Staying positive when facing the daily challenges of and autoimmune illness is very important. Focusing on what you can have instead of what is no longer a part of your life/diet is a good tool. But what many people, and professionals fail to recognize, and provide support for, is the varying layers of grief, that accumulate on a previously healthy family system. Today, I am remembering what isn't a part of my life anymore because of an autoimmune illness.
A few weeks ago, we were sitting in our Swedish Dining Room, Beanie had found a deck of cards, and was fiddling with them, with her back turned to us in the kitchen. She turned around with her signature mischievous smile, spread the cards in her hand before us with the dramatic flair of a mustached side show magician and said, "Pick a card. Any card." We obliged, and broke up laughing at the ineptitude of her trick despite her spot on character acting.
The scene felt so familiar, it took me a moment to realize, it was Dad. Right there, smiling out at me from my daughter. "Hi Daddy, I really miss you. Thanks for coming to see us." Just as quickly as I felt him there, he was gone.
Happy Birthday Dad.