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A family came together over Jonathan's special needs. How would they cope when he passed on?
Nothing was out of place in my son Jonathan’s room, but I straightened up anyway.
I didn’t know what else to do with myself.
Since Jonathan’s death I’d felt like I was drowning in sadness, unable to find anything solid to hold on to. Even my family seemed to be drifting apart. Although my husband, Kurt, and our two sons all lived in the house with me, they felt miles away.
We had always been close. Jonathan had brought us even closer. Before he was born I worked full-time as a nurse’s aid. When I decided to go back to school to become a nurse, Kurt and the boys encouraged me all the way.
Then Jonathan was born, a 25-week preemie with multiple complications including cerebral palsy and hydrocephalus. I quit my job to stay home with him. Jonathan needed round-the-clock care, but instead of feeling overwhelmed, my son gave my life new purpose. He gave us all a common purpose.
That’s what’s missing, I realized, standing in Jonathan’s empty bedroom. A purpose. In the four years Jonathan had lived, he was the center of our world. Even when we knew his time with us was coming to an end, caring for Jonathan gave us something to hold on to, like a life raft.
“A lot of mothers wouldn’t be prepared to handle this,” Kurt said one night as I was inserting Jonathan’s feeding tube. “They wouldn’t have your medical experience.”
“You know, it sounds strange, but I feel like I got my nursing degree for Jonathan,” I said. “As if I was preparing for him all this time without even knowing it.”
I truly believed that. Now, without Jonathan, all my preparation seemed for naught. I wasn’t ready to go back to nursing, to caring for others as a career. I’d been happy in my job until my son came along. But in caring for Jonathan, I believed I’d found my calling. To care for someone I loved most in the world.
His dad and his brothers felt the same way. Jonathan was our focus, and without him we each seemed to retreat into our own sadness. I swept a dust cloth over the bedroom windowsill.
My eye fell on a metal leg brace propped up in the corner. Picking it up, I remembered massaging Jonathan’s muscles every day before slipping the braces on his legs. Once they were in place I helped him to his feet, supported by a standing frame. He grinned from ear to ear.
There was so much Jonathan didn’t have—he couldn’t see or walk or talk. Yet he was the happiest child I had ever met. He wanted nothing more than what he had. When I was taking care of him, I was just as happy.
Jonathan had brought such joy into our lives that Kurt and I had applied to be foster parents for children with special needs. We’d had to put those plans on hold when Jonathan took a turn for the worst.
I sunk to the floor in the middle of the bedroom, clutching the cold brace. Jonathan had become the heart of our family. Now that heart was gone. God, send me another child like him. Someone to care for.
Of course I did have loved ones to care for even now. My husband and two sons might not have Jonathan’s special needs, but they were hurting too. I could help myself by helping them.
Even without Jonathan, I could be useful. I went into the family room to gather materials for a scrapbook. That night after dinner I called a family meeting. “We have to help one another through this,” I said. “I know we’re all thinking about Jonathan all the time. So let’s talk about him just as much.”
“I miss him,” Jeremy, 13, said.
“I can’t concentrate in school,” said his brother Matt, 7.
Kurt must have talked for 15 minutes straight. The boys had to jump in when he stopped for a breath.
I got out the scrapbook I’d started. “This will be our memory book,” I said. “We can keep all our happy memories of Jonathan safe inside it.” I’d already written about Jonathan and his leg braces. “Jonathan always made us happy as a family,” I said. “He can still do that.”