It was clear as the kids and I visited their dad the other night that conversation was no longer possible.
Bit by bit, the dementia had robbed Steve of the ability to speak.
And so we found other ways to engage, singing to him family favorites in the hallway of the nursing home: “The City of New Orleans,” “American Pie,” Jimmy Buffett’s “Come Monday,” as nurses walked by and smiled.
Sadly, we found Steve couldn’t sing with us either.
The vicious early onset frontotemporal dementia that struck him three years ago at 59, disrupting a thriving career of teaching, authoring and world travel, had stolen his ability for lyrics, too.
But as the rest of our voices resonated in the surprisingly sharp acoustics of the hallway, we saw his foot tapping and his hand moving in perfect time against the arm of his wheelchair.
We noted that he ably caught the car keys we played catch with and that he gripped and rubbed our hands when we held his. And when Emily handed him a flower from the courtyard, we saw that he knew to bring the soft petals to his nose and smell.
We held onto these glimmers of recognition that evening, small moments of remembrance that were especially poignant when we reminded him of the momentous event about to take place in our family.
In six weeks, my son’s fiancee will give birth to my son’s first child, a first grandchild for Steve and me -- an announcement Steve somehow remembered from several months ago when his cognition was better.
“You said you don’t want to be called ‘Grandpa,’ right? You want to be ‘Pop-Pop’, yes?” Chris reminded him. And Steve nodded his approval.
As we sat there that evening with Steve in his hospital gown and gray socks, I thought of the word fandango.
I know the fandango as a passionate Spanish folk dance full of dips and turns, which is why, I guess, it came to me in that moment.
Life is nothing if not dips and turns and none so apparent than in the juxtaposition of these major events in our family’s life, the one fraught with deep sadness and demise, the other a trumpeting of new life and growth.
And yet, I realize the occasions hold more in common than is immediately apparent.
I remember my friend telling me 33 years ago when I announced I was pregnant with Chris, that a baby is a symbol of hope.
I am sucker for hope — sometimes too much so.
Hope can be a delusion. Hope has kept me in relationships I should have left years before.
Hope can also be a saving grace that shows up in the most unexpected places. It is how I’m still alive, even as I was told 12 years ago I had a terminal form of leukemia that could kill me in a few years.
At the co-ed shower the weekend after we saw Steve, several of us toasted the parents-to-be and the baby-to-come. We also toasted the family and the values being upheld around baby Milo — values like commitment, responsibility, sacrifice and respect that Chris’ siblings speak of when they talk about helping with the baby. They are values, I realize, that have shown up consistently with Steve, beginning when eldest son Chris detected a need two years ago.
Seeing that both his parents were in trouble health-wise, he left a successful life in D.C. and came home to help. Soon the other two children, living in Montana and Colorado, followed. The three of them have not balked, but have helped pack up and relocate Steve the unfortunate five times he’s had to move to different facilities. They visit Steve, take phone calls from nursing homes and are otherwise fully involved with his care. They also help me at home. And now here they are again, ready to do whatever is needed to help Milo get a good start.
We don’t always know what to hope for when it comes to Steve’s direct care. We continue to advocate for him. But we have quit hoping for a reversal of disease or a perfect living situation. Holding out hope for such ideals within the current medical model, we have come to know, is only an exercise in futility and stress.
Where we pin our energy is in the same place we hold for Milo and every other stronghold in this family: Family and love, commitment and care, communication and safety, no matter who, no matter what the circumstances.
There is an irony here in the tragedy of Steve, and a serendipitous co-mingling that I also believe in, along with hope: Had Steve not needed help with his dementia, Chris would not have moved home from D.C. Had Chris not moved home, he would not have met Kate. Had Chris not met Kate, there would be no baby coming. Had Chris not shown the way, his siblings might not have moved home. Had his siblings not moved home, we would not be here in the same town, all together for Steve, or for this birth and this new baby.
As it is, we live five minutes from each other.
Unlike my children, who grew up hundreds of miles from extended family, this baby will be surrounded by aunts and uncles and grandparents.
In the midst of it all, tragedy and new life, both, we see that hope lives.
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