There’s no place like home for the holidays

When I was 11 years old, I had pneumonia and spent the week before Christmas in the intensive care unit. Because I have SMA, my pulmonary functions are weaker, and when I get sick — even with a common cold — it can quickly become something much worse. I’ve dealt with pneumonia many times since then, but I think that was the first time it was that bad.

It was a really long time ago, and I don’t remember very much. Oddly, the things I do recall are the ugly brownish-reddish-yellowish privacy curtains that made me hungry for a McDonald’s cheeseburger, the disgusting chalky liquid medicine I managed to keep down by sucking on candy canes, and my mom sleeping beside me with her head on the edge of my bed.

I believe it was the first time I’d heard doctors use the term “collapsed left lung,” though it certainly wouldn’t be the last time that weak side of me — due to scoliosis — would cause me serious trouble. The prognosis was grim, and no one knew if I would leave the hospital alive, much less get home in time for Christmas morning.

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I’ve been thinking about that memory lately, because I know of several families who are spending this holiday in the hospital — from Indiana to Virginia, and Portugal to the Philippines. Some are dear personal friends, and some are people I’ve never met in person but have come to know and care about through the work I do at the nonprofit We Carry Kevan. But no matter who they are or where they live, they’re all facing scary and uncertain moments with their children who are very sick, and they have asked for prayers for healing and hope.

Life is fragile, and there is never a “good” time to have a medical crisis, but it feels especially hard to bear at this time of year. My heart is heavy as I pray for them and try to comfort them, and as much as I hate the smells and sounds of a hospital, I wish I could be present with them. I wish they could be healthy, happy, and home together. That is my prayer, not just for this holiday but for many years to come.

But even if their challenges continue, if they have to return to the hospital many times or deal with ongoing symptoms and progressive weakness like I have, I pray they will have courage and hope to hold them up and see them through. I pray that they will receive a generous amount of love and peace, in ways that they never could have if their lives were easy and safe. I know these things are possible because my family and I have experienced them and know them to be true.

I did get to go home for Christmas that year. In the family photo album, there is a picture of me leaving the hospital with a gigantic teddy bear. On Christmas morning, I was in my pajamas sitting around the tree with my brothers and parents, and I unwrapped my presents: a beautiful dress, a precious doll, and a set of delightfully practical organizer drawers to hold all my cassette tapes. (Thanks, Dad!) And best of all, I received another day, another year — more than 30 years, actually — to live and grow and love. What a gift!

My mom wrote in her scrapbook: “A very special Christmas — everything unimportant was stripped away. This holiday had extra meaning for all of us just to be together and thank the Lord.”

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.