“Hi sweetie, how are you?” I sit down on the kitchen bar stool that I placed next to my daughter Temma’s bed. It’s a high bed, called a captain’s bed with drawers underneath and then put on even higher stilts by Tim, Temma’s Dad. It’s like Temma’s boat, her captain’s bed on the high seas, the princess captain riding the waves and now I’m sitting next to her with the electric keyboard stand as our breakfast table. I’ve laid out Temma’s feeding tube with syringe that I will plug into her “button” (gastrostomy tube feeding port going directly into her stomach), and the oatmeal, banana, milk,and juice that I’ve blended up for her breakfast smoothie. My own breakfast of black tea, toasted waffle with peanut butter and yogurt also sits on the table. We’ll eat together as we do most mornings. I’ll plug in Temma’s tube and plunge some food into her stomach, taking bites of my own food in-between syringe fills of hers.

This morning, Tim, my husband, Temma’s Dad, answers for Temma, putting words into her mouth as we often do for her. He’s sitting by, working early morning computer stuff of his own. “Hi Mama, I’m doing just dandy,” Tim says for Temma.

It’s our daily morning routine, veering off from it only when I’m gone for some reason. Home is wherever Temma is now. She embodies home for Tim and I. And for others who come in and out, they too feel her presence filling the space with a home calm, her captain’s bed providing a stability on the waves of change sometimes crashing, sometimes lapping.

I’m glad we bought this bed rather than a hospital bed, like the hospital beds that come into your home with in-home hospice care. The State of Illinois providing a one-time funding (back in 1990 when the State of Illinois had funding) for families caring for family members with disabilities wanted us to purchase a hospital bed that more easily met the requirements of in-home care. I didn’t want a hospital bed, just like I didn’t want a feeding tube put into Temma’s stomach when she was two-years-old even though she was aspirating on her food and we were rushing her to the hospital ER when she was struggling to breathe. I didn’t want a hospital bed or a feeding tube. I wanted everything to be as “normal” as possible.

“I will keep feeding her by mouth. She’s doing O.K.” I screamed at the doctor on the phone who was to do the gastrostomy tube surgery on my baby. “It will be temporary. A year, maybe two. Until she is able to swallow better.” the Doc tells me calmly. How many times has he dealt with a screaming mother?

“We will purchase this captain’s bed from the Naked Furniture store. It’s less expensive than a hospital bed.” I tell the State of Illinois caseworker on the phone, not screaming this time, but adamant about wanting this bed and not the hospital bed. Temma now five years old and becoming more difficult to move in and out of her bed. The caseworker ends up taking our case with the State and we are approved for the captain’s bed.

The caseworker gave in to our pleas. The doctor did not. Thank God for that. Twenty-eight years later from that gastrostomy-tube placement surgery and Temma still is tube-fed, probably only living and thriving physically because of it. And the bed…well I’m still so glad for it rather than a cold hospital bed that may have made our lives easier, but without the captain’s bed how would we have made our way through the waters?

Sharing our breakfast around the captain’s bed has become a sacred ritual for me, Temma and I sharing our thoughts and prayers for the day. Plugging her feeding tube into her button is like plugging my thoughts into hers. Where the princess captain now locates her bed feels a bit like our room on the ship of life, surrounded by windows, the skylight windows above us like the portholes showing the blue or grey of the sky like the sea. We’re floating upside down in a dreamlike state like in the film, The Science of Sleep. It’s a metaphor of our life together, Temma floats somewhere between the waters above and the skies below bringing me with her. This morning the waves are lapping gently. I’m grateful.