Our son Lucas was born on the Winter Solstice, the longest night of the year. Right away we knew there were unusual medical concerns, but it would take another year before Lucas was diagnosed with Menkes Syndrome. At one day old, we only knew he needed to be in the NICU for the next several days. We and his doctors had to work through the darkness of that long night searching for some clue that would shed light on his condition. My wife and I were still optimistic enough to think this was some short-term medical need that could be fixed in the days ahead. But until then, we needed to be in the hospital. We would not be home for Christmas.
Christmas in the hospital seemed like a bleak prospect. When the offer came to stay at a nearby Ronald McDonald House to be more comfortable, we jumped at it. But I’ll be honest, I expected it to be the most depressing Christmas of my life. I could not have been more wrong. This home was warm, welcoming and calming. Several common rooms were packed with decorations and Christmas trees with presents around them – presents for us! Meals were provided too. I was amazed at how comforting it was. The main living room was aglow. I know it was from the Christmas lights but it felt like the walls themselves were made of gingerbread and radiating warmth. It was still the worst Christmas of my life – the most stressful and fear filled –but it was also beautiful, inspiring and affirmed the true meaning of the season of giving.
From day one of Lucas’ life, I was acutely aware of how different our lives had become. My wife and I had been fortunate enough to never have experienced a struggle we could not manage on our own. We were the people who could help those less fortunate. Suddenly, we were the ones who were less fortunate. Neither of us had ever needed or accepted charity. Now we had to. We needed the help of a place to stay and meals that we neither cooked nor paid for. It was hard to adjust our minds to this new state. It was so foreign to us and tough on our pride. No one wants to be dependent on the kindness of strangers, but it did open my eyes to the beauty in their generosity.
The dull ache of knowing we were the ones in need of someone’s goodwill that Christmas, marked the beginning of our new understanding of giving. We moved our minds past notions of exchanging gifts, or even sharing of our gifts. We’re all told it is better to give than receive, but I think there’s a bit of an art to being an open recipient. With Lucas’ birth we were getting a crash course in that. I hope we managed it with some grace.
At the time, we didn’t know those ten days around Christmas would not be an isolated example of needing and accepting help. In the months and years ahead, we had to get used to asking for help for our son. Sometimes it was just asking for extra consideration or kindness; sometimes it was leaning on government programs; and sometimes it was turning to a charity because we were in need. We wanted to be self-reliant and proud but Lucas’ needs sometimes grew beyond what we could handle without help.
Even after we learned that Lucas’s prognosis included severe degenerative symptoms and a shortened life, my wife maintained the point of view that many people were in a worse situation than we. And this is completely true, some people were. I was always impressed by her generosity and compassion in this attitude. It was too easy for me in those early days to see our situation as close to one of the worst things that could happen to anyone. I envied her ability to hold space in her mind and heart for those who had things even worse than us. But I wonder if another appeal of this otherwise healthy attitude of gratitude might also have been a way to hold on to an idea of ourselves as still apart from those truly in need – we might now be the needy, but we were not the neediest.
I couldn’t help feeling that in my son Lucas, we had our own version of Tiny Tim from Charles Dickens “A Christmas Carol.” Lucas was every bit the heart-melting inspiration we needed to be our best selves. He also filled Tim’s role of reminding us that some misfortunes are more serious than others. In film adaptations of Dickens’ story, Tim gets a prominent seat at the head of the table. In our reality, it was hard to get Lucas’ wheelchair quite close enough to the table. Most large family meals would find Lucas oddly angled in a corner, between two chairs – the bulk of his wheelchair mocking our efforts at equal inclusion.
But Tim wasn’t the only example Dickens would lend to our new life. I became haunted by a version of the Ghost of Christmases Yet to Come. My mind would turn from the joy of our Christmas Present to the sadness for what was likely to come in some not too distant Christmas Future. The image of Lucas’ place at the table, now empty, was not just a possible future to be decided against, like in A Christmas Carol. From the day we learned his diagnosis, we knew it would someday come.
Last week Lucas’ younger brother, age 10, said to me: “I was thinking the winter solstice is about bringing change. Lukey was born on the solstice and he brought change because when you have a rare disease, it changes everything.”
His words highlighted the attitude we needed to embrace. Unlike Ebeneezer Scrooge who learned from the Ghost’s visit that he must change his behavior to avert tragedy, we knew we could avert none of it. None of it – except our approach to it. So the dark visions of our Christmases-yet-to-come would instead inspire us to embrace change and make the most of the life ahead. We’d draw from the darkest night the lesson that the light does return and our time in it is precious. We will be open to the unexpected, to the uncomfortable and especially to unexpected gifts.
At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began to tell Lucas’ story with a short documentary: “Menkes Disease: Finding Help & Hope” narrated by Oscar nominee Mary McDonnell. That film led to Daniel co-founding with Bo Bigelow DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases.