By Ann Schrooten
“The physical acts we perform for our children easily become tiresome chores. There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child’s need. We turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person’s mouth; of sitting by a child’s side in the dark, singing, so that he can sleep. We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong. Our tasks are our opportunities.”
As the parent of a medically fragile and disabled child, I occupy many roles, some of which are suited to my personality and some of which are not. My personality is well suited to be Jack’s advocate. I crave knowledge, I enjoy researching and I am up for the challenge when it comes to dealing with the insurance company, the school district, the equipment company and the medical profession to ensure that Jack is getting the best care and the best services possible. I work well with words on paper.
As the parent of a child whose disease renders him essentially a quadriplegic, I also occupy the roles of respiratory therapist, nurse and personal care attendant. I find these roles much more difficult roles to fulfill. I am not a touchy feely person, I’m not outwardly emotional and I’m not a nurturer. It’s just not in my makeup.
When our children are babies, we expect to provide for their every need. We expect to feed them, change their diaper, dress them, pick them up and physically move them from Point A to Point B. But we also welcome the freedom we regain when our children become independent and self- sufficient. Diapering, feeding and dressing your child become demanding, relentless and exhausting tasks after ten years, especially when you add to the list the daily stoma care, dressing changes, trach tie changes, breathing treatments, and the never ending suctioning, suctioning and more suctioning.
There are times when I just really dislike (okay, hate) doing all the medical stuff and personal care that Jack requires. However, when I find myself losing patience or rushing through these tiresome tasks, I make every effort to stop myself and reflect on the words found in the first paragraph of this entry – words that really hit home with me the first time I read them many years ago. I remind myself that my touch is Jack’s only opportunity to feel the world around him. He cannot reach out and touch me, he must wait for me to reach out and touch him. If I’m feeling impatient, rushed and bothered with the care I’m providing to Jack, he will most certainly sense this in my touch. I remind myself that the tasks of changing his diaper, getting him dressed, adjusting ventilator circuits and positioning his legs and arms as he settles in for the night are all opportunities for me to show Jack how much I love him. I force myself to slow down and carry out these tasks with a gentle touch and a soothing voice.
And while there will always be those times when I’m tired and I just want to get the task done, I strive each day to seize these opportunities to touch Jack with love. After all, Jack will never read the words I write when advocating for him, but he will always feel my touch in those moments of providing for his physical needs.
 From Changed by a Child by Barbara Gill.