Monday, November 11, 2013

Home at Last

We were excited to be back in our own home and to begin sharing our lives with Caleb.  The first full day that we were home we wanted to take him on an outing.   Looking for something routine and normal, we packed Caleb, the ventilator, the battery and all of the emergency equipment and headed out to our local mall.  Pulling him around in the wagon that had been gifted to us by his doctor, we felt such a sense of freedom to be able to go wherever we wanted without being accountable to anyone.  It was the normalcy of life that we had missed when we were in the hospital. 

Back at home we were settling into a routine. We snuggled with Caleb in our favorite rocking chair, I was able to nurse him without others around, we read him books and basked in his presence.  When he slept in his crib at night we could sneak in and gaze upon him.  Everything was calm and quiet compared to the hectic hospital atmosphere. The only part of life at home that we didn't know what to do with, was the constant presence of a nurse.

When we left the hospital, sixteen hours a day of nursing had been arranged.  This was to allow Bob and I time to sleep at night but also to have the help of a nurse for a large part of each day.  Because of the great number of hours that the nurse was in the house, I began to feel displaced. The nurse was paid to care for Caleb, and so I felt my role was to clean, do the laundry, and cook. Except I wanted to spend my time holding and caring for Caleb.  In the evenings, it was awkward having a nurse at the house while we sat down to dinner.  If Caleb was out in the dining room with us, so was the nurse.  The other option was to leave Caleb in his room with the nurse, but then we missed him. 
Because of this discomfort, we quickly did away with most of the daytime nursing hours but knew that the night time hours were a must.  We couldn't risk sleeping through one of Caleb's alarms because that would mean death for him.

 Although we accepted the need for the night time nurse, we never really adjusted to the intrusiveness of having one in the house all night.   Because we lived in a small two bedroom apartment, this invasion appeared in many forms.  One night Bob and I wanted to be intimate.  The supplies that we needed were in the hall closet, so Bob went out to get them.  When he returned, his arms were filled with cough syrup, medicine bottles, and the needed items.  “Why,” I inquired, “do you have all these other things?”

"I didn't want the nurse to know what we were doing,” he shared.  And that became the crux of life with nurses.  We needed them; we even became great friends with many of them, but we were never able to get past the discomfort of having another person around for so much of our lives.  When we left the hospital, we were thinking that we would be returning to our private, intimate lives.  The intimate part returned, but the privacy never would.


  1. love it....there are so many things we take for granted :( love you friend!

  2. Denice....thank you for inviting me to your story and to your blog. All too often, we do take things for granted. Your openness with your pain and sorrow, doubt and faith, and even your intimacies are portrayed in truth and dignity. I have a growing respect for both you and Bob as you share your life story with a child who is unique. Through you both, God has blessed Caleb. Jacki Z

  3. Laetitia, thank you for all of your support. Jackie, Thank you for coming along on this journey. People have always seen our family, but have never known the story behind what they see. It amazes me that God can make beautiful, that which is such a struggle. Somehow, in the telling of the story, I also find myself embracing our lives a little more.