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Familiar Comfort

By Cecily Woodard-Spencer
Landover, MD USA
From: NEW BEGINNINGS, Vol. 15 No. 2, March - April 1998, p. 46-47

I know firsthand how important fathers are both to a mother and her children. Let me tell you about an exceptional father--my husband, David Spencer.

Our oldest daughter, Dresden, was born October 14, 1992, with Down syndrome. Though we quickly came to see what a profound blessing she was, those first few days of Dresden's life were very difficult and stressful. The situation was made worse by ignorant nurses who promptly informed me that a baby with Down syndrome couldn't be successfully breastfed. When I told them that she was breastfeeding, they insisted on watching me feed her to prove it; still, they continued to pressure me to give her a bottle. During all of this stressful time, my husband was my sounding board and supported my resolve to continue breastfeeding. Little did I know then that this would be the case throughout much of my daughter's life.

Although most children with Down syndrome lead relatively healthy lives, our daughter was plagued with health problems including, finally, leukemia. Dresden was hospitalized or was visiting the doctor's office often during her four-and-a-half years of life. We soon found that pediatric hospitals are overwhelmingly a woman's domain; fathers visit but are rarely very involved, especially with chronically ill children. We noticed that if we were both in a room with the doctors, they would ignore my husband and speak only to me--they quickly learned not to do this!

During her first hospital stay, Dresden became too weak to nurse enough to prevent dehydration. We had to consent to a nasal-gastric feeding tube. I chose to pump breast milk for her. Again, my husband strongly supported and encouraged my decision, while the doctor did not. For two years I alternately nursed and pumped my milk for my daughter while my husband helped to fight off the many professionals and friends who tried to prevent or dissuade us.

My daughter's health condition made her vomit several times daily and have repeated episodes of diarrhea. There were numerous medications to administer, and eventually she had a feeding pump, a feeding tube permanently inserted in her stomach, and a permanent IV central line in her chest that required daily changes. IV pumps became a part of our daily lives. My husband took an active role in all of this. When Dresden was hospitalized, David spent every night, all night, in the hospital caring for our daughter and then worked all day. No matter where we were, when Dresden was feeling good, he played with her, played the piano and sang for her, and read her millions of books. When she was feeling bad, he cried for her, held her, sang to her, and again read her millions of books. No one could make her smile like Daddy--and what a smile she had!

Almost every week, someone at the hospital would pull me aside to tell me what a wonderful father my husband was. I, of course, wholeheartedly agreed! My husband would always respond to this with amazement--he believed that any father would do the same for his child, and was amazed to learn that there were many people who considered a father who was involved actively to be a luxury.

On January 27, 1997, Dresden died of complications from the leukemia she had battled for almost three years. Her last day was like many before; she spent the day with her sister and me, and she spent the night with her daddy, holding his hand. As the morning approached, she let go of his hand and slept peacefully for the first time that night, and then quietly passed away. I believe she could not bear to go while holding her daddy's hand.

My husband thinks it is sad that people thought what he did was extraordinary for a father. He feels, as I do, that we were blessed to have Dresden in our lives and that he wouldn't have done things any differently. I know that he wishes fathers who aren't involved with their children could understand what they are missing. I am profoundly grateful to have David as my husband and as my children's father.


Friday, June 14, 2002 11:10 PM by dw.
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