The Last Dance and a Very Thankful Mother

It was a sunny day the Sunday before Thanksgiving, 10 years ago. By then, we had our own “private room” in the pediatric ICU. We’d been there since Halloween, when 6-month-old Joshua first went into respiratory distress.

When Josh was 6 weeks old, he was diagnosed with spinal muscular atrophy. They said he probably wouldn’t live to be a year old. At the time, I felt like I’d been cast in a tragic movie, my mind racing, not knowing how to react. I pounded my fist into the cinderblock wall and cursed God. It didn’t help and I felt out of character.

I returned to my son’s room and began to rock him, wondering: How can I, a single parent, possibly give this sweet baby a happy life, when he takes his every cue from me? From somewhere deep inside, the answer came: He’s OK right now. He isn’t suffering. He’s happy. You need to live one day, one moment at a time.

Our morning ritual was to put on an oldies station and dance about the house. Joshua loved those times; I’m not sure if he laughed because he was having fun or if he was laughing at my dancing. He really had a great little laugh.

Perhaps because he was incapable of much self-initiated movement, Joshua was a tactile child. He liked to be touched by soft things; his Puffalump frog was a favorite. Josh especially liked things that he could feel throughout his body, like riding across a wooden bridge nearby. He giggled as the wheels on his stroller bounced on the rough planks.

He loved trees. Sometimes I’d carry him out to the front yard, holding him beneath the old magnolia tree so that he could look at the blue sky contrasting with the deep-green canopy of leaves. Sometimes, now, when I’m under a tree, I imagine I’m holding Josh.

As Josh began to get weaker, his last hospitalization came. I stayed with him day and night. A nurse named Hing brought graham crackers and milk to me each night in the room that served as a dormitory for the parents of the kids in ICU.

One of the therapists found a portable radio for us. That last Sunday morning before Thanksgiving, I tuned in an oldies station, and Joshua and I danced--monitor cords, oxygen and IVs dangling. He laughed and gurgled and cooed. At one point, I looked up and all of the children and parents in the ICU were watching us and applauded. That was our last dance.

Joshua died on the day before Thanksgiving. I remember thinking that morning, “My life will never be the same again.” The word “never,” never felt so final as it did that morning. But as I said, it was a sunny day. It’s funny how things just stop and we remember every detail in such times. Ultimately, the fog of grief lifted.

Even so, I’m apprehensive as the weeks between Halloween and Thanksgiving approach. Each year, Thanksgiving gets a little better and I find a little more to be thankful for. This year my husband and I anticipate receiving the greatest gift of all. She’s 2 years old, and her name is Chanthy. She was born in Cambodia. Once more, I will enjoy the gift I had in Josh, the gift of motherhood. Chanthy should be joining our family right around Thanksgiving, adding a dimension of light to a day that has been dark for many years.