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Dedicated to Dr. Robb Wilson who patched alot of my life back together
A year ago had I been required to select a type of cloth to symbolize my life, I may have chosen a white quilt –an unblemished canvas upon which I carefully embroidered each experience of my existence. Every potential intricate design analyzed to see whether it would blend into the master plan. Every strand of floss inspected prior to use. Every stitch precisely placed. And why shouldn’t it be that way? After all, I had gone after all my goals – and had attained them all. I had excelled at the academic path and became an emergency physician. I had a great job, a wonderful husband, a house, two cars, and a beautiful daughter. The perpetual plotting of my life’s course had seemed to have paid off.
On December 3, 1999, my husband and I took our five-year-old daughter of a "reassurance MRI." Over the previous month, she had had four bouts of vomiting – three of which were associated with chocolate. With one of those episodes, she had complained that her forehead hurt. To an ER doc, headache and vomiting may equal a brain tumor- especially when it is your own kid. I had felt foolish going to our pediatrician for such trivial symptoms. What are the odds that my kid would have a brain tumor when only a little more than 2000 children a year in the United States are diagnosed with brain tumors. It was silly to even consider the possibility that my perfect life would be messed up by such an event.
We waited in the MRI suite over an hour while our daughter underwent her "45 minute scan." When the neuro-radiologist came in to inject dye at a time that we were supposed to be done. In my steadiest voice I asked, "Can you tell us something?" The response – "Yes mom, it is a posterior fossa tumor."
Those words were like a knife plunging right through the fabric of my "White Quilt" life. The walls seemed to be closing in. My palms were sweaty. My heart rate doubled. It seemed I couldn’t breathe. A brain tumor! How could this me? How could this happen to us. My life would never be the same. An unmistakable gash tore through the center of the fabric of my life.
Fortunately, sometimes other parts of the psyche come to rescue one in the darker hours. Thus, the doctor part reiterated those few memories from lectures in medical school. Kids are resilient. Their brains are more plastic and can handle things better than adults. Kids rehab well. The gaping hole in my life could be fixed. There would always be a mark left. It would take a little longer until I could continue embroidering the measured pattern of my life, but we could get back on track.
Little things immediately started fraying the edges. There was the medical equipment at the bedside "just in case" she deteriorated and need an emergency hole drilled in her head to relieve the increasing pressure. There were the nurses who shined a blinding flashlight in my daughter’s eyes hourly through the day and night. The sedation "unmasked" the problems this mass was causing my child. The next morning her coordination was so bad that she could no longer walk alone. There was my baby yelling on the way to the operating room, "It’s my tumor and I want to keep it." It was hard, perhaps the most difficult ordeal that would ever happen in my life but we could get through it.
Of course, when there is a mass there is always the possibility that it could be malignant; that it could be cancer. In addition, whenever a brain has been insulted by having someone else’s thumbs on their brainstem, complications can happen. Despite knowing this, nothing could have prepared me for the double whammy out of surgery. It was a medulloblastoma; in other words – cancer. In addition, the surgery has devastated your child. Within 48 hours, I had been told three phrases that a mother never wants to hear. Your child has a brain tumor. Your child has cancer. Your child is entirely disabled.
My beautiful, strong-willed child was blind, mute, unable to swallow, incontinent, and paralyzed on the right side. Her right eye was turned all the way into her nose and the right side of her face drooped so that the saliva that she could not swallow dribbled down her chin. Her muscles had no tone. She could not even hold her head up. She was unable to follow even the simplest command. The only things she could do were hear, smell and breathe. By some cruel twist of fate, my little girl still had the normal thinking powers of a five year old with all the silence fears and unspoken questions.
It didn’t end there. My scarred, disabled child became a medical device kid – a permanent shunt was placed. We would never, ever be able to leave this experience behind us. The shunt would be a constant reminder. She would be tattooed. The radiation had the potential to make her short, sick and stupid. Then, there was the chemotherapy!
I stared at the pile of rags my "White Quilt" life had become. It had been destroyed. I looked at the shredded pieces and I did not want them. It did not want this life. It didn’t seem salvageable. After all, didn’t we learn anything from Humpty-Dumpty? Sometimes, things are just impossible to fix.
Nevertheless, others had hope and came to help try to put the pieces back together again. The first one to try to sew the tattered fragments was the neurosurgeon.
"Mom, it will get better," he would say.
"Will it really?" was my plea.
With a calm and steady voice the answer came, "Yes mom, it will."
Unfortunately, stitches for the spirit sometimes are not usually as strong as surgical sutures for the body. Thus, he would have to redo his work everyday.
Then others came – each offering their own patch to help repair the damage. Family totally rearranged their lives to be with us and give us rest. Co-workers took up the slack for two months of missed shifts without a single complaint. Friends brought in meals so that we wouldn’t have to have "hospital food." Therapist gave use encouragement. Nurses and doctors gave us hope. Total strangers let me pour out my heart in the cafeteria. Presents and prayers came from all over.
Each interaction brought its own patch. These patches had richness in textures, colors, sizes and designs. The way they fit together made other patterns of their own. A new quilt was created – a patchwork quilt.
It is a year later though I still have a great job, a wonderful husband, a house, two cars, and a beautiful daughter; but my life will never be the same. I’m told the fear of recurrence will lessen, but it never goes away. It will be a harder life for my girl than I dreamed for her. On the other hand, I now secretly smile that my daughter can have a temper tantrum and run into her room screaming, "it’s not fair". I look forward to our weekly "family dates" and am thrilled to be able to get up at 8AM Saturday morning to take her to ballet. I practice random acts of kindness more often. Thus, some of my patches are even sewn there by myself.
Today, I look at my quilt. It was not at what I had expected. However, I must admit I love my Patchwork Quilt. It has given me the chance to feel the entire spectrum of emotions, the chance to see the resilience of life, and the chance to experience the goodness of people. With each patch, I see someone who has touched my heart and healed my soul.
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