The day has come. Exactly a year since Valentine's 1997 when I awoke from my sleep with a goal - to pinpoint the cause of my son's sporadic and unexplained eye, bladder and stomach problems.
My mind agonized all day at work. The question was, "What could I do that the family physician and optometrist could not?" What was I looking for? I blundered through the day in my state of preoccupation: I worked, lunched, bought Valentine's greeting cards for family and friends, finalized plans for the evening's gourmet meal that we had planned for our dinner guests. The workday ended. I routinely made my way home but the sense of urgency continued and with it came an overwhelming sense of helplessness. I had a goal but could not think of way to achieve it.
Suddenly, without more than a fleeting thought, I pulled into the parking lot of the local pharmacy. I parked the van and found myself walking purposefully toward the building, into the store, to the back - the pharmacist's counter. I could hear my far away voice and commanding words, "I would like your most reliable urine diabetic test strips please." Knowing I had them but not knowing what I expected to do with them, I found my way out of the store, into the van and on my way home. Already late for dinner and the house full of guests, I uttered some feeble apology and asked my son to come to the bathroom.
Looking straight into the big blue orbs of my son's trusting and loving eyes, I said, "Mommy wants to see what kind of little critters are floating in your pee that might be making you feel so yucky. Can you pee in the container for me?" Without questioning, he did. I frantically tore open the box and found the container of strips and an instruction pamphlet. I threw the instructions in the garbage; dipped the first strip into the container and then set it on the counter and waited. I watched one of several square blocks quickly transform from a color of spring green to a dirty, dark brown. "Ah", I said to myself - a clue! What did it mean though? I retrieved the pamphlet from the garbage and read carefully. The answer was starring me in the face. That little, dirty, brown square said it all -- diabetes. I tidied up the bathroom, washed my hands and joined my family and guests for dinner.
Without a word to anyone, I followed my son carefully for the next 18 hours. I tested his urine every few hours and recorded everything he ate. I did laundry, cleaned the house, attended to my husband who was suffering from his own illness and then finally packed a little suitcase with my son's favorite sweat suites, pajamas, books, teddy and blanket, ready to go.
The hospital emergency staff listened to my concerns, accepted my logbook and bottle of test strips but looked puzzled. Within minutes the Triage Nurse guided us toward an examining room. She repeated the same urine test procedure and used a strip from my bottle and one from hers. The results matched perfectly, another dirty, dark, brown square! Within minutes a lab technician appeared and began to draw blood from the tiny veins of my child who was showing signs of shock and fear. As she whisked the vials of dark red blood back to her lab, I seized a quiet moment to rock my baby and explain what was happening. He fell into a deep sleep and I rocked us both for a long lonely hour. The only audible sound was the thumping of two unequal heartbeats meeting at the walls of our chests that pressed firmly together.
Suddenly, the doors swung wide open and two doctors and a nurse were standing over us. I struggled to wake myself and clear my mind. My child sleepily wiped his eyes but kept his body pressed close to mine. For a long moment in time, nobody spoke with their lips. Eyes - many sets of human eyes made contact, young and old. The silence broke when one of the doctors mechanically uttered, "you are an astute woman and you already know what I am going to say. Yes, your son will be insulin dependent and your lives are about to change." Not another word was spoken from the lips in the room. The many sets of eyes met once again, in that moment in time. We stayed in the hospital for a week. I watched our lives change but could not feel the experience. I watched my son "feel" pain as he was picked, pricked and poked but could not fathom what he was feeling deep inside. I saw my husband come and go and sensed his anxiety but I had no energy or desire to hear his thoughts or touch his feelings. Like so many of you before us, our time came to leave the artificial nest and sever the round-the-clock ties from the hospital. We did and we began to redefine our own nest and routine. It was hard, lonely, confusing, scary and painful. For a long while I felt stuck, in that moment in time - unfeeling.
Friends knocked on my door and in my heart but I didn't answer. One day our son's care giver found a window of opportunity and she gently opened it but just a crack. Inch by inch she opened it more. In came hints that there were so many families, like ours, that were willing to talk, support, encourage and share their experiences. I turned my back in disbelief. Months went by but she didn't give up. One day she invited me to join her to meet some of these people in cyber space. I saw, I listened - even talked a bit but then walked away and pretended the experience never happened. I wanted to believe it but didn't trust.
Weeks later, I went to the room, alone, I tried to speak but couldn't find my voice so I watched and listened. One day I found my voice and spoke and I was scared. Another day I went with my voice and spoke and felt safe to speak and found someone that was willing to meet me where I was. We didn't talk about diabetes. We connected with each other by talking about books, music, travel and so many other interests in - life. Without knowing, I began to trust. I kept coming back, sharing and trusting more and more. Soon I began to hear what others had to say about their experiences and began to learn - another window opened!
My new cyber friend was patient and kind. She stuck with me - in that moment in time but encouraged me to take the risk to move out and onward. She introduced me to other parents. Following her guidance and cue, I took a risk and joined other families of children with diabetes for a real-life skating and pizza party. Together, my son and I did it. He took to the experience like a duck to water. I took to it like I did the hospital experience - unfeeling. I met my cyber friend for a cyber chat. Without warning, the window flew wide open and suddenly I was talking, shouting and crying; I was feeling!
The few months that followed were intense and confusing. My days and nights blended together. I thought about so much and felt everything so profoundly. I was learning, growing, changing - feeling. I started to trust, a little bit, and met more parent friends so the circle widened and the experiences deepened. As experiences peaked, an unexpected feeling of guilt slipped in. In an effort to quench my thirst for information, knowledge, skills and parents to share with, I began to lose focus of my family, even my precious child with diabetes. That was all right for a moment in time
Today is Valentine's 1998 and my family is going on an overnight retreat to re-connect. We'll start by celebrating our accomplishments over the past year. Each of us are at different stages in dealing with diabetes and that's OK, but now its time to try come closer together and move forward - as a family.
The author receives e-mail at [email protected].
Original posting: 28 Feb 98
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