Being diagnosed with lupus(www.lupus.org) at the age of 23 turned my “carefree 20’s” into a time of tests, lifestyle changes and medications. It was also however, a time of graduate school, love, marriage and my sons. My husband Mark knew of my illness well before we were engaged. In my attempt at full disclosure to whom he was marrying, I made sure he understood that I had an illness that I and now he would have to deal with for the rest of our lives. His only response to me was to quote a line from an Anita Baker song(\”Just Because\”) and tell me “it was a welcome sacrifice.” He loved me and anything that happened would be “our” problem.
Health issues have always been a part of my adult life. I’ve had numerous surgeries including the most traumatic one when I lived in Houston, TX. In 1995 I was told that an MRI showed a tumor on my spinal cord. My doctor at the time came into the exam room, looked at me and quietly said, “It’s not good news.” During the week between diagnosis and surgery the doctors had no doubt that the MRI scan showed an astrocytoma- a cancerous tumor with a typical life expectancy of 5-7 years.
In the week before my surgery I obsessively added and re-added those 5-7 years to my 32 years of age. My counting was always done in terms of how old my boys would be when I died. I counted and recounted determined to live long enough so that my then 5 and almost 3-year old boys would have their own memories of me. If I couldn’t live to raise them I wanted them to at least be able to recall special moments we had together; to remember what it felt like to have me as their mother. I poured all of my prayer and positive energy into a full recovery. I wanted Mark and I to raise our sons together. The surgery was successful and showed that the surgeons initial diagnosis was incorrect. The tumor was benign. I’d been given my life back.
In 1999 after the birth of my twin daughters, complications arose and I awoke from general anesthesia to hear Mark whispering in my ear that the doctors had to perform emergency surgery to stop the bleeding that started during delivery. In a soothing but shaky voice he told me that I’d suffered tremendous blood loss. He quietly said, “We almost lost you.” I listened to his words and my first question to him was, “Are the babies alright?” He assured me our daughters were premature but doing well. I drifted back to sleep relieved that my children were okay. I was grateful to be alive for all of my children.
Every time I had doctor’s appointments or hospital stays I was keenly aware of the sick children that were there. Any moments of self-pity I had were erased as soon as I saw a sick child. I would silently pray for the child and their family and then be grateful that I was the one enduring the unknown with painful tests and hospital stays. If it had to be someone in my family that was sick, I wanted it to be me. I felt that I had an unspoken pact with God that any suffering to befall my family should come to me.
I never shared my feelings about my pact with anyone. I held it close as my way of keeping my children from harm. Like most parents I wanted my children protected and free from as much danger and pain as possible. Even those times when I was faced with death, I knew should anything happen to me, I had no doubt that Mark would love and care for our children. My silent pact boiled down to its essence simply put was, “let it be me. “
I know how foolish, superstitious and naïve I was to believe that I could have a contract with God that included an immunity clause for my children. It was still the deal that I wanted. I was to be the sponge that dealt with pain, my children would be spared. Intellectually I knew every time I whispered,” I glad it’s me and not the kids,” that I was operating under an illusion of control. There are no deals with God and he doesn’t offer immunity clauses. The fierceness of my Mother Love however, prevailed over logic and reason. Time and time again I truly believed that I was cocooning my children from harm. “Let it be me.”
Then the illusion that was my pact shattered. Our phone rings late at night and two police officers come to our door telling us the words no parent wants to hear. Our son was dead. Jordan was killed in a car accident. He was gone and all of the notions I had about my accumulated pain and suffering being the buffer that would provide my family some immunity from further tragedy was nullified. Even in my haze of shock and grief I felt so stupid. There are no bargains or immunity clauses. All I had to do was look around to see all the tragedy in the world to know that my family is not exempt because I made a one-sided deal with God.
My son is gone. Since Jordan’s death I struggle not to veer to the extreme and feel that my children will never truly be safe. I still have my moments, my days when the thought heaviest on my mind is, “Let it be me.” I work so hard to stay sane and not slip too far into darkness and depression. Jordan’s life held virtue, humor, caring and so much light. Each day I make a choice to keep going for my family and for me. The future can’t be predicted. I can’t mystically shelter my children from all harm. The shock of loss has slowed my acceptance of the fact that complete protection is an illusion-even if it is fueled by the fiercest love. My vigilance towards my children is still strong. But a parallel vigilance is burgeoning. It still whispers, “let it be me” but the meaning has shifted. Let it be me who remembers all aspects of my son’s too short life. Let it be me that honors in my own way the zeal Jordan had for life. Let it be me that loves life and hopes for joy to come in the morning.