Friday, January 16, 2009


From Changed by A Child by Barbara Gill:

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. Anyone who knows me well can attest to the fact that 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. Remember, I’m an ISTJ.

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 and re-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 (or not do it at all), 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.


Julie W said...

Ann, you brought tears to my eyes again! I agree, there are days when I just sigh and think 'here we go again' when setting up yet another tube feeding (funny, it's this one that seems to get to me most!). Yet, when Sam is sick, I go into a completely different mode and perform all those tasks with the competence of a medical professional. sending you some hugs (((HUGS))) across the pond.xx

Anonymous said...

I certainly resonate with what you wrote--different children, different needs--but similar feelings. I am a nurturer, and I do find myself resenting the day to day tasks. I will try to remember what they are really all about. Thanks.

Anonymous said...

sniff, sniff.

Marissa said...

Thank you for this touching reminder.


Cindy said...

Another masterpiece of a post!

Anonymous said...

Couldn't not comment on your post! Thought it was beautiful and really touched me. I often feel guilty as sometimes I just hate having to do all those extra tasks and setting up feeds especially! I am so glad you write your blog as it really does help people to know they are not alone in how they feel sometimes.

Lots of love,


Anonymous said...

Tears are flowing here as well. Thank you for the reminder I needed....


Faith said...

Once again you hit the mark. Very real, very inspiring.

Thank you for reminding us what "this" is all about.

Have a great week,

PS: And Go Cardinals!!!!!

Sarah said...

It does make me feel bad to think that I don't always do the mundane medical tasks with a cheerful heart, or when she can see me exasperated with her for coughing blood all over the couch for the 3rd time that day. As always, you know just how to say things. Thanks for the amazing reminder and hugs to you and Jack! And not cyber ones either....Uber Touchy Feely ones just for you! ;)

Carolee said...

Thanks for reminding me of the sacred responsibilities I have to my little one - and to remember what I am to her even when I'm frustrated and tired.

Laura said...

Beautifully said. Thank you for the much needed reminder.