Life was good. I was 38, happy and healthy and married to a man who worked hard and loved me. Our kids were now 16, 12 and 8, a girl and two boys respectively and all doing what kids those ages do. We were working on our interpretation of the American Dream. We had a large, beautiful home in a lovely suburb outside of Alexandria, VA with good schools within walking distance. A private swimming club was just blocks away and the streets had ample sidewalks allowing for Big Wheels’, two wheelers, roller skates, skateboards and dogs walking their masters. The streets were adorned with Dogwood, Magnolia, Mimosa and Apple Blossom trees and the fragrance could instantly vanquish any and all worries in a matter of moments if one just took a moment to breathe it in. So lovely.
Life was good. I was a stay at home mom and although it was a struggle financially, we were willing to give up some of the materialistic trappings others found so important and had no interest in keeping up with the Jones’. I got kids off to school in the morning, cleaned the house, did laundry, grocery shopped, cooked, shuttled animals to and from the vet and all the things mom’s do. In what seemed like a flash, it was time to be home to meet the afternoon bus and greet the schoolroom warriors with open arms and afternoon snacks before they set out to visit friends or play before dinner.
Life was good. Dinner. Homework. Baths. TV. Dessert. Story Time. Bed. Quiet. Finally, a moment to just sit and ponder the morrow and all it would entail, enjoy a glass of wine or a shot of Jameson’s, depending on how story time and bed had gone and share an adult conversation for the first time all day. The husband turned in early, his day began about 4:30am so I actually, on rare occasions, would find myself awkwardly alone and was actually able to read a book or watch a TV show uninterrupted by tattle taling, life or death crises pertaining to toy ownership, hair pulling, shoving, whining or someone pawing at me or my clothing. That magical time of the evening when you finally hear the quiet and exhale.
It was a three-day weekend, Labor Day I believe, and on Tuesday morning, after the inevitable mad rush and last minute grabs of books, bags and missing but found papers, the kids were gone and it was once again quiet. I went to the basement to empty the dryer and hoisted the always overflowing basket up to my chest to make my way up the steps. I turned the corner to tackle the second flight up to the bedrooms and stopped midway. Damn, this basket must have a living creature in it, the dog or one of the cats perhaps? It seemed unusually heavy and I was actually out of breath for a moment.
As all parents do, I ignored the temporary absence of super powers and forged on to fold, sort and the worst part, put the folded clothes in the countless dresser drawers. I refilled the basket with grass stained blue jeans, mismatched socks, wet towels from the bathroom floor and as usual, in just seconds, it was overflowing again. I made my way down the two flights of steps to the basement, loaded the washer and headed back to the first floor. There I had to tackle what was the breakfast carnage of half eaten eggs, spilled cereal milk and empty juice boxes. I found myself needing to just sit for a moment. Why, oh why were my super powers failing me today? Why was my Super Mom cape not magically billowing in the still air surrounding me? Mom’s don’t get sick, mom’s can’t get sick but I thought the dreaded mom thought…..I think I am getting the flu!
Three hectic days came and went and although tired and rundown, no other flu symptoms reared their ugly head. I was however, running a low-grade fever of 99 degrees that would not abate. My husband insisted I go to my doctor just in case I had some sort of infection which may require antibiotics. That’s it, an infection, a low grade infection. Take a few antibiotics and Abra Kadabra….Super Mom is BACK!!
The doctor’s words swirled around me, almost visible as though I could reach out and pull them to me but still they eluded me. I could only comprehend and decipher a few of the words, the others were foreign to me. Function. Creatinine. Renal. CBC. Dialysis. ESRD. I continued watching his lips move and the words methodically pour out of his mouth. He had obviously said them so many times they were, to him, just medical jargon. Was he speaking a different language? It was all so surreal. Wait, wait, wait….just WAIT! I felt as though I was coming out of anesthesia and finally was beginning to understand the words, I could hear them but I wasn’t sure what they meant. “So, I just need some antibiotics and then I should come back…..when?” “No, no!” he exclaimed. “You must listen and understand this. You only have 3 percent kidney function, we have checked this twice to be sure, you are in total renal failure. Your kidneys are not working anymore.”
For the next 5 years, I spent every other day in a dialysis chair, each treatment taking 4 hours. Why had I been dealt this hand of abysmal cards? My fingers seemed to only hold cards of depression, anger, self-pity and spite. To make matters worse, I was surrounded by very elderly people, young people in renal failure is rare. I witnessed people being there one day and never returning. I witnessed people being there one day and returning without an arm, a foot, a leg all of which were lost to diabetes. In they would come, lifeless, pitiful and broken. We would always be back. We knew well that without this machine death would arrive and not leave quickly or mercifully. It would linger and slowly fill our bodies with fluid until little by little we would drown. I was a prisoner to this machine, literally connected by needles and tubing watching as the blood left me to be cleansed and then returned again to my body through another series of plastic ‘veins’. It was hell on earth. I suffered, my marriage suffered, my children suffered and our finances suffered. Life was not good.
These years of my life were to be spent, not only on dialysis but waiting for someone to die. Waiting for a beeper to make that vibrating buzz alerting me to call the hospital to be told there was a kidney for me. I would be told that a ‘cadaver’ donor matched my markers. A call that meant that someone had indeed died so that I could now live. Until then, our lives continued as well as can be expected with a sick and often absentee Super Mom.
I had to take a part-time job on days I was free from the prison of my chair so we could try to hang on to our home, our American Dream in our big house on the streets lined with the sweet smelling trees and the ample sidewalks and wonderful schools and the swimming pool….so I worked as a waitress at a restaurant called Table Talk while my kids were in school and on weekends when the husband could take care of them.
I finally got that call while at work one day. I would receive my phone call within hours of another family receiving the news that their father had been killed in a car accident on his way home from teaching a weekend Music Appreciation Class at a high school in some other state. A husband, a father of two teenaged boys, a beloved teacher of 20 years, a man loved by a mother and father, sisters and brothers, friends and neighbors and someone who would, ‘help anyone, anywhere… just because’.
My boss, an Iranian man named “Mo” was the only one with me that morning. He and I were opening the restaurant. It was 6:30 am. He was coming out of the kitchen as I was hanging up the phone. I walked robotically to the nearest chair and fell into it. He rushed over to me seeing that I was obviously shaken by whatever news I had received on that phone call. I told him. I told him I had to go. There was a kidney for me. I cried and cried. “Why you are crying, Habibi (sweetheart)? This is the news we have all been waiting for! You must go now, go now to the hospital.” That day he was my father, the father I never had. I rose up to collect myself and started to teeter, losing my balance and his arm instinctively found the small of my back as a father’s would to keep his child from faltering. He held me tightly in his arms and quietly whispered, “Come, Habibi, I will take you to your car and I will call your husband and he will be there. You go, you go now.”
That was 1998. My transplant was very successful and within days I felt so good, so alive, so full of energy. It had been so long I hardly remembered what healthy felt like. While dialysis does keep you alive, you are never well, you are never strong, you are only…alive. Feeling awful had been my normal for so long I had forgotten I wasn’t old. I had forgotten I wasn’t an elderly frail and crumpled person. I was only 43.
As I lay there in my hospital bed full of gratitude and thoughts of new beginnings my heart suddenly sank realizing that a family was attending a funeral. My happiest time was their saddest. My feelings of joy and new beginnings were their feelings of sadness, endings and never agains. Again I cried. I cried for their sadness and my joy. It was a bittersweet, emotional roller coaster I rode for a long time.
That is the day I got it. That is the day I realized how damn lucky I was that I had that dialysis machine. I was not a prisoner, I was a patient being kept alive by that machine. I was so lucky that I fit all the stringent parameters one had to meet back then to even qualify for a transplant. I was blessed that a kind man was caring enough and big hearted enough to want his organs used to give life to someone he would never know. I was so fortunate that I could still live a long and healthy life knowing all the while that those broken and crumpled, elderly people would never get this opportunity for they were too old to be on the National Donor List. I never realized it at the time but they were my inspiration, never complaining, always a kind word and always full of hope for me that I would one day get that call.
God, how did I not see all of this? How did I get it so wrong? I was too lost in desperation, depression and self pity to open my eyes and see what was right in front of me all along. They were not broken or crumpled, not in spirit or in attitude. They were grateful to be there, grateful to be alive, making the best of the cards they held, the cards of Acceptance, the cards of Wisdom, the cards of Faith and the cards of Kindness. It was, by far, the biggest life lesson I had ever received.
Life was good. I was home, I was a mom again and I could do everything I did before but this time, no breathlessness, no diet and fluid restrictions, no chest catheters, no tubes and needles, just a normal and happy life. Yes, there were many physical challenges but none that I could not overcome by realizing that all things happen for a reason. The trick it seemed and the lesson to be learned was that when things are bad and seem insurmountable, things that rock you to your very core and make you question your faith, you have to ask yourself, what am I supposed to be learning from this? How do I take this bullet head on, and not only survive it but do it with gratitude in my heart?
That knowledge and life lesson that I was so sure I understood and embraced was to be put to the test in 2006 when I became incredibly ill. Suffice it to say that I lost 50 pounds in 2 months, couldn’t keep food or water down, was so weak I had to be helped from room to room and after a short stint in the local hospital, was told I would need to be put in a nursing home. I was dying and there was nothing more they could do for me. What made it all the more frustrating is that all my medical testing came back fine. On paper, there was nothing seriously wrong with me to ‘fix’, at least nothing that extensive and grueling testing could produce for a firm diagnosis of SOMETHING! I didn’t go to a nursing home, I went my own way. I returned to the hospital where I had received my transplant. I threw all my eggs in that one last basket of hope that perhaps there, they could come up with a definite diagnosis and prognosis. I couldn’t envision any other outcome for it would mean figuring out a way to say goodbye to everyone I loved. My husband, my children, mother, sister, brother and so many others. How, how do you say goodbye to those who are your life force, your light, your loves? How is it even possible to leave them behind as you slowly fade away until one day you are just gone?
The doctors never did agree on what it was that caused me to lose that kidney after seven years. Seven years of pampering, healthy eating, exercise and everything I could possibly do to ensure I treasured the gift this man, this stranger, the kind ‘Music Man’ that ‘helped people just because’, had given to me. They managed to keep me alive with IV’s for nutrition, pain medication and hope. The National Donor List wait time was now 8 – 10 years. I was reunited with my dialysis chair, my savior from years before and as I entered the room with all the familiar sounds and smells, I cried. I cried a lot.
I did ask myself what I was supposed to be learning from this devastating and potentially life threatening lesson. I didn’t figure out the answer to the question of why this new and emotionally earth shattering challenge had been presented to me but went forward with gratitude in my heart instead of anger. I knew if I put myself in a place of quiet and Grace that my answer would come.
Life was good. I accepted my cards and played them well. I was dealt the Gratitude card, the Strength card, the Positivity card and to my surprise, the Get Out of Jail Free card. Even though I no longer saw my chair as my warden, I had to accept my destiny and realize that once again, I had to be in that chair, every other day for 4 hours a day to stay alive. I was grateful to be in that chair.
I was given my Get Out of Jail Free card when my son, then just 22, came to me as a man, no longer my green eyed little boy and told me that he had in fact been tested and was a match, a great match for me to receive one of his kidneys. I told him that I loved him so much for offering this incredible gift of love to me but that he was too young. I was fearful something may go wrong with his own health because of it. I assured him I was fine waiting, the call would come and that I wanted him to just be 22 and not to take on my burden. “Mom, I love you. I am doing this! I want to do this more than anything I have ever wanted to do in my life. I know in my soul one of the main reasons I was put on this earth was to help you as you have helped me from the day I was born. You gave me life, mom, I think I can spare you a kidney.” He laughed a little through his tears and as I reached for him, now 6’3 and so strong, he saw my struggle and realized I was too weak to pull myself up to meet his open arms. Slowly and ever so gently, he leaned over and gathered my frail little 98 pound body up into his arms and cradled and rocked me and told me everything was going to be ok, just as I had done for him so many times before. Once again, I cried.
May 14th, 2007, when I was strong enough to endure the 6 hour operation, we were rolled down the hallway, hand in hand to the OR at INOVA Fairfax Hospital. My son gave me a kidney. My son gave me life as I had given him 22 years before. My son is my hero. He is a wonderful concoction of humor, inspiration, determination and fortitude. All attributes he would need to draw on to deal with a devastating diagnosis of debilitating Lyme Disease and Migratory Arthritis just two years later. I moved in with him and took care of him for a little over a year. For much of that time, he could barely walk, much less take care of himself due to all the joint pain and swelling, so once again it was my turn to cradle him and wipe his tears away.
He is better today, he has a lovely girlfriend, a little Beagle named Otis who we know was an angel sent to keep him happy company the many days he was unable to get out of bed. He is getting better all the time. His treatment plan took much longer than most as his body, having only one kidney, could not handle the massive doses of antibiotics needed to aggressively attack the Lyme Disease. He still suffers with joint pain and problems today but is grateful they are not what they once were. We just take care of each other and we do it with gratitude and love with full knowledge that no matter what, we will be there for each other. He has learned one of his life lessons much earlier in than I did and he is a truly a remarkable man but in my heart, he is still my green eyed little boy. He holds the cards of Inspiration, Tenderness, Bravery, Perseverance and Love.
I went to the doctor today for a post transplant check up as I do every three months and my labs were that of a normal person. I still shutter a bit seeing the patients in their chairs in that room marked Dialysis and know ‘that there but for the Grace of God go I’. I remain grateful, every single day. I face my problems always from gratitude, knowing that mine are far less than so many others out there.
Renal failure was, in retrospect, one of the greatest gifts of my life. I learned who I am, who I don’t want to be, how strong I am, the unwavering power of the mother/child bond, to never take life for granted for it can change in a heartbeat, to be good to my body and soul and to never, ever underestimate the power of love. It was then I realized the answer to my question was revealed to me through my incredible son and the unconditional love he showered upon me.
Life is good. It’s all in The Cards….