Debbie's Mom
Here it is ten minutes past midnight. It is October 4, 1998. My daughter, Debbie, and I are at Dartmouth-Hitchcock Medical Center, Room 550, Pediatric/Adolescent Unit. Debbie has Crohn's disease. Over the past three months, she has developed severe anemia and had to have a blood transfusion. The nausea is so bad that she can't eat or drink so they gave her Phenergan to control the nausea. She had a strong adverse reaction to the drug causing her to be so "out of it" and scared at the same time. It was awful to watch. Like a dream when someone is falling, you reach out to catch her hand, but you can't quite reach it and you don't know why. I am staying awake to watch her and make sure there are no more reactions.As I sit writing by a crack of light coming through the window blinds, I recall March 1998, when after one and a half years of not knowing why Debbie was always ill, we were told she had Crohn's Disease. This may sound strange, but there was relief in hearing that announcement. For a long time she was misdiagnosed, mistreated, and often told it was psychosomatic. Now, we could move on†but her illness seems to pull the plug just when you think she is stabilizing and getting a handle on management. Still learning!
Her father and I are divorced and he lives over 2000 miles away. For the most part, he has been uninvolved with her life. There isn't anyone for me to "bounce off of." Family and friends have been invaluable but when it is 3:00 A.M. and you are in the dark with your thoughts, feelings, and fears, you are alone. Yet, strangely enough, that is when hope and a positive faith become your armor. They are forged during the moments of greatest adversity. In the morning you rise with, yet again, renewed strength to face whatever comes. I am thankful that supply is endless.
I often have to rely on Debbie's judgment for her need of medical attention. She has proven to have a rather accurate barometer, thank goodness! Still I wonder: "Have I made the right choices? Have I not been aggressive enough? Have I been too aggressive?" It is hard to know. I wish I had been more aggressive in seeking the correct medical care for my daughter in the beginning. My respect for the knowledge and expertise of the medical community was so "intact" that it was detrimental to my daughter and her suffering. There are a lot of people I would like to revisit but I have to leave some of these things behind. We need healing of our spirits so desperately. I thank God for the medical community Debbie has now. Whenever her gastroenterologist walks into the room it is as though she were a fairy godmother, who waves her magic wand and fills the room with peace and calmness.
Debbie and I have attended some support groups, she with teens and I with parents. There is such great relief in releasing! Sharing your experiences with others, regardless of the illness is so vital to processing. Up until then you have felt isolated in a box, but all of a sudden the box disintegrates and space, air and light surround you. It can be that freeing!
Crohn's disease is not always visible to the beholder. Therefore, making people believe you is very frustrating. There have been difficult and sometimes gut-wrenching moments with family members. I have come to understand that because we love and care so much, we sometimes flatly deny its existence when faced with a life-changing situation.
Now that Debbie and I have endured these trying years, I know a deeper and stronger relationship with my daughter and son. I feel respect from family and friends that help empower me in dealing with life's hurdles. We have been cradled in the arms of mercy, caring, and love causing my spirit to know more dearly its roots.
No one knows why one person is afflicted and another is not but we always search for possibilities, a chance to redesign the blueprint.