My name is Susan and my husbandís name is Tad and we live in California. We lost our son Adam Kevin in February 1998. He was 12 1/2 years old at the time. He had a rare disease called Metabolic Nephrogenic Cystinosis. Adam was diagnosed at about 16 months, after many, many trips to the doctor, trying to convince them something was very wrong with my Adam. Finally, on one visit I went from being just an overly worried mom, demanding tests be done, to the next visit being told I was lucky he was still alive. Cystinosis is a very rare disease, one we had never heard of. We entered a new "normal" in our lives, a normal that now centered around medicine, doctors, hospitals and Adam.
I met Tad in early 1982, about two years after my first husband and I divorced. At that time my daughter, Rachel, was 7 years old and Brian was three years old. They loved Tad from the very beginning and welcomed him into our little family. Tad and I married on June 16th, 1984. Rachel and Brian were so thrilled to have a dad again. Tad is such an awesome father. I knew I had married a wonderful man and in doing so had given my children the gift of a loving, caring father. Our Adam arrived to join us on June 16th, 1985. It was not only our first wedding anniversary but also Father's Day that year. I remember telling Tad I could never top this anniversary/Fathers Day gift.
Adam was a happy, loving, laughing little boy. He was my blue eyed little towhead and we all loved spending time with him. He was the most amazing little boy. He never met a stranger, as everyone was just thought of as a potential friend. When Adam was about a year old I started to notice that something was wrong. I didnít know what the problem was but there were subtle changes that became more and more evident. Adam went from being called ĎPorker Boyí to refusing to eat. Instead of eating he just wanted to drink. I noticed at night that one diaper only lasted minutes not hours. This started my many trips to the doctor. I was going to the pediatrician every two or three weeks but he never seemed to find anything; he would just tell me I needed to "eat with Adam" and I needed to "keep the fluids to a minimum". This went on for many months. Finally, one night, I was changing Adam in front of the television and I realized he looked just like the children who were starving in Africa. I knew that there was something terribly wrong, so the next day off I went again. I was demanding tests and at this visit the doctor finally saw that Adam had lost five pounds over the previous five months. The next doctor visit was in the Pediatric wing of the hospital in Oakland, two hours from us. We were met by the doctors telling us that we were lucky that our Adam was alive and we finally were given a diagnosis of Cystinosis. Cystinosis is a rare genetic disease that even most doctors have never heard of. We were very lucky to have a doctor in Oakland that knew about Cystinosis and whom would follow Adam for the rest of his life. Life became a blur of doctor visits, many medications, surgeries, too many hospital visits to count, etc. Luckily we moved soon after Adam was diagnosed, and, in doing so met the most wonderful man who was to become Adam's pediatrician, 'Doctor Jim'. We were so blessed. I knew early on that he loved my Adam and he would always do what was best for him. What a gift this was to have a doctor that not only listened, but also cared. We grew to love Jim and his wonderful family; they became part of our extended family. Our Adam was a trooper, no matter what he had to face he did it with a joke and a smile. He had the most contagious grin and when he smiled his whole face lit up. I decided to home schooled Adam as when he got the flu etc., we would be facing a two-four week hospital stay. So through his short life I was not only his mom but also his teacher and his nurse. As I needed to be home with my Adam, I was also able to be home for Rachel and Brian. I had always wanted to be the mom who was home to bake cookies, help with homework and have time to be with my children. Now I had the time, and I loved every moment of it. I am so glad I was at home for all of them. I know there were times they felt I loved Adam more as life pretty much revolved around him: If Adam needed to be at the hospital I was with him. We were lucky that people from the church stepped in and helped us with taking care of Rachel and Brian. This was a godsend and now looking back I realize how truly lucky we were to have people willing to help us. Adam and I were very close, we spent everyday together. We had an unbreakable bond and not even death has changed that.
Our life settled into what was normal for us. Rachel got married in October of 1996 to a wonderful young man, Ken. Brian was off to University of California, Santa Cruz. Adam was excelling in school with a true love of reading. I was now home schooling Adam and another young man, and tutoring in the afternoons. Tad was driving Medical Scanners around Northern Calif., putting in many hours on the road. We knew that sometime in the next couple of years Adam was going to need a kidney transplant. Adam was becoming the most incredible young man. He had a great love of computers, in fact he was my computer guru when Tad was gone. Adam was a loving, caring, compassionate young boy. He loved his Nintendo, his x-men, ninja turtles and had recently gotten into the commando computer games he could play with his dad. Rachel was Adamís second mother and he missed her when she moved out, but they stayed in close contact as she lived close by. Adam always admired and loved his big brother, Brian, and he wanted to be like him. Brian was very athletic and Adam was so proud of his accomplishments. The common goal that they found, where Adam could be competitive with Brian, was Nintendo; while playing Nintendo, the field was even - Adam could compete with his brother and he loved it. They would disappear and play for hours. This was always special times for them. Adamís best friend, Chris, spent many, many hours with us,. He was like a third son. Chris and Adam met when they were about 3 years old and they quickly became friends for life. He and Adam would be together for days and when Chris would go home the phone would ring and he would be calling Adam to tell him something important. I am so thankful for Chris and the love he and Adam shared. He was truly Adamís ďBest Friendí. Sometimes people live their whole lives and they never share the friendship these two young boys did.
February of 1998 arrived and life had settled into our new normal. Rachel was happily married and Brian was in his second year of college, not only loving but excelling in everything he chose to do. It was hard to have Rachel and Brian living away from home but as we all know that is how life goes. Adam and I were even closer, as we now spent a good majority of our time together. Tad was still working long hours. Insurance and Adamís many medications still put a huge strain on our budget. Adam was doing very well. We had not had any hospital stays for a few years and we were enjoying the mundane, taking the medicines (13 in all), being hooked up to a feeding tube for 12 hours a day, the normal way things were done.
One day in early February, out of the blue, Adam (being a very mature 12 yr old), called me from the school room saying he needed to have an important conversation with me in person and privately. We went into the living room and we then had the strangest conversation. Adam said to me, "I hope you die first mom". I was kind of taken back and asked him why. I jokingly said "Do you want to be rid of me" and he answered me so solemnly, "No Mom; Because if I die first you wonít be able to make it without me". (well he was right- being with him each and every day had really spoiled me). I told him I was sure I would die first. Then he told me if I died first he would cremate me and put me in an urn and take me with him wherever he went. Then he added, "If I die first mom, cremate me, but don't sprinkle me. Put me in an urn and keep me with you wherever you go." His joking attitude shone through when he said with a chuckle. "But mom, if the house ever catches on fire get me out don't let me burn up again." A bit shocked at this conversation I just agreed. Then he continued, "Mom it is time to adopt nowď.
We had tried for many years to have more children. All hope ended after a hysterectomy when Adam was about nine or ten. We had even looked into adoption, but didnít think we had the money to pursue it. We had decided that our family was as it was meant to be. In my conversation, I started to give my reasons why it just wasn't a good idea right now but he went on to convince me, "Mom I have not been in the hospital for a really long time and my transplant is more than two years away. I really want to have a little brother or sister. I know it is expensive but I have $600 in my computer fund (he was saving for a lap top). He added, ďTake the money mom and call it 'Adam's adoption fund'. I told him I would talk to Tad and then Adam made me promise, he just wouldn't take anything but a solemn promise. Then he put his arms around my neck, gave me a hug and a kiss, and went back to school. I thought this was a strange conversation but I filed it away thinking what a kind hearted little boy he was and how lucky I was to be his mom. Little did I know what lay ahead of me.
About two weeks later, on Feb 19th, Adam and I played hooky that day. Dad was gone for a day or so on a long run. We sat home and watched Family Feud and some of our other favorite shows. He came in and laid in bed with me and we read and watched some more television until it was time for him to go to bed. I turned out the light about 11 p.m. and went to sleep. About 12:40 a.m., or so, Adam came into my room and told me he didnít feel good. I helped him to the bathroom and went to the kitchen to get him a drink. When I returned to the bathroom Adam had collapsed on the floor. He was not breathing. I canít even describe the horror I felt. I tried CPR and mouth to mouth, it wasnít working. In between trying to help Adam I called 911 and was told that help was on the way. They never stayed on the line with me and that honestly added to my horror. Finally, after what seemed like an eternity, the paramedics arrived. They worked on Adam and finally put him into the ambulance and transported him to the hospital. On the way to the hospital the driver turned to me and asked me if Adamís disease was suppose to kill him. In shock, I answered,Ē Yes, but not until he is a lot olderĒ. The driver then told me to be prepared as he didnít think Adam was going to make it. I kept thinking this would be like the show ďRescue 911Ē; they would take Adam to the hospital, figure out what was wrong, fix it, and then send him home. I really didnít think he was never coming home again. I was there a few moments before Adamís Dr Jim arrived. I knew he would take care of Adam. I felt a sense of relief seeing Jim.
I have never prayed or begged God like I did in those few moments but it to was to no avail. I had paged my husband, Tad, numerous times but as his pager was on vibrate he didnít get my pages. I soon heard the nurses calling the Highway Patrol to try and search for Tadís truck, and part of me then knew this was really bad. Rachel and her husband, Ken, showed up soon after I did. Brian was called and he was racing as fast as he could to get home from college. Soon, Dr. Jim came out with tears in his eyes and I knew that my wonderful, vibrant, loving son was gone. I donít know how I continued to stand and breathe, I know now I was in shock. We were able to sit with Adam for a few hours. I knew I had to be strong as my older children were looking to me for guidance. I was strong, I knew I didnít want my Rachel or Brian to think that they werenít every bit as precious to me as my Adam was. My strength until my husband finally arrived 10 or so hours later was Dr. Jim, I knew I didnít have to be strong for him. I also knew that he loved my Adam as much as was humanly possible. Somehow, I survived, how Iím not sure. When Tad arrived at the hospital we went down to the morgue together, I remember giving Adam his blanket and his teddy bear (yes, his bear was always with him. Grey bear was with us through every hospital stay and each and every night that Adam slept). These were important to him in life and I wanted him to have them with him forever. The next days are a blur. Thankfully my husband took over at this point. Tad made all the arrangements: the funeral home, the church, minister, music. The days following I really have no memory of. I also donít remember much of the memorial. All I really remember was the picture of my son sitting next to a wooden box, that contained his ashes. I donít remember much of what was said, or even who was there. I vaguely remember hearing the bagpipes that were played at the close of the service. I couldnít believe I was to have no more days with my little boyÖ
After Adam died the doctors told me they didnít know how Adam lived to be twelve years old. They believed it was Adamís and my strong will and love that allowed him to be with us for that long. Adam and I had the most incredible bond. Somewhere deep inside of me I remembered the promise I had made to my son just a few weeks earlier. I felt that he knew I wouldnít be able to make it without him and this is why he had made me make a promise. The questions kept flooding my mind, the most important one was "Did he know he was going to leave me?" I knew my sanity was at risk and I knew that others who knew me felt the same way. How could I go on without my boy? It was at this time that I decided Adam had this strange but wonderful conversation with me for a reason... so when I couldn't sleep, think or function I went to my computer. I read all I could about adoption -I kind of lived on the computer for about 12 hours a day. People really gave me grief but I didn't care. It was like I had a mission. I read everything I could and then I put a small ad in an on-line classified. Then I closed down my computer and I was done. I knew I had done as my precious boy wished. I had honored my promise. I was done on March 13th. My wonderful daughter Rachel came and took me away for the weekend. We went to a small town on the coast about 3 hours from where we lived. On the last day we were there I went down to the rocks on the ocean and sat for awhile. I was so overwhelmed I just couldnít imagine my life without my Adam. As I sat there wondering "Where do I go from here", I noticed something blue in the sand as the tide went out. I leaned down and picked it up. It was a little blue stone. As I turned it over to look at it more closely, I saw that written on the rock was the word íHopeĒ. Somehow I took this as a sign, for hope seemed so very far away.. My daughter saw it as a message also. I clutched at that rock for quite a while. It gave me a peaceful feeling, something I desperately needed. When we returned on March 15th I turned on my computer and checked my email and there was a message. This message was from a young mom in Texas who was about 5 1/2 months pregnant. She knew she could not keep this baby and she needed help. After talking to Tad, my mother and Rachel we decided to do what we could to help this young woman. On March 18th, Tad went to the airport and picked up Kim and she lived with us until July 3rd. Our daughter, Molly Amanda, was born on June 29th, 1998. Adam would have been 13 years old on June 16th , 1998. He was supposed to celebrating the beginning of his teen years and instead I was the one who was given this gift....
Without Adam's urging I would not have done what I did. Did Adam know he was going to be leaving us? That is a question I will never know the answer to. But he did know that without him I would be lost and we believe he had a hand in us receiving this wonderful gift. When I asked Kim (Molly's birth mom) how she picked us, she told me when she first went to the ads everyone wanted her baby and she had no clue whom to choose. So she closed her eyes and prayed. She felt she gave the decision over to God. Then she closed her eyes and put her finger out; her finger landed on us. Everything just fell into place, Molly was in our house within one month of Adam earning his wings. Many people said things like "I loved my child too much, I could never have done what you did..." "How could you have done that I would have just laid down and died..." They just don't get that we can't just lay down and die. ItĎs not that easy. I would think to myself that I loved Adam with all my heart and soul, as much as any mom 'could' and I knew that conversation with a little 12 yr old boy had a purpose; I knew that is why Adam made me promise him.. Yes, Molly was a WONDERFUL gift from Adam. Our Molly feels the strongest bond with Adam. It is so amazingly touching.. About two years ago while I was in the school room with my husband (luckily he was there also, otherwise he might have never believed me) Molly came to me and said "Adam loves me". I answered, ďOf course he doesď. She looked at me and then continued, "When I was an angel with wings and I was flying with Adam he told me he loved me". I was just sitting saying nothing at this point. She went on to tell me that one day she gave Adam her wings because she didnít need them anymore and then she was born, to us. When she says her prayers at night...she always ends with" God bless Adam and God".
I feel my strongest connection to my Adam through my Molly. She keeps his spirit alive daily. I now understand the saying, ďWhen God closes a door he opens a window." I still donít understand why the door had to close, but I will be eternally grateful for the open window.
I realize my children are here on loan and I wouldn't trade a minute. I know if I gave up the bad times I would have also given the good, sweet loving times with my Adam. So I treasure every memory I have and there isn't too much I take for granted anymore. I truly try to let everyone, from my children and husband. To my friends and family know how much I really love and appreciate them. I am a better mother, wife, daughter, and friend now than I ever was. I am more compassionate, I have learned to listen with my heart as well as my head. I read one time that we are not made up of what happens to us in life but how we deal with what happens to us in our life. So with the life I have left, I am bound and determined to take the lessons I have learned and try to be a better person. I have had a great teacher. I know in Adamís short life I was his teacher, but in the 12 short years that Adam lived he really was the greatest teacher, and I was really his student. Even after almost five years it still seems so unreal at times. I can't believe I will no longer feel his arms around my neck or hear, "I love you best mom." I find I even miss the dreaded kangaroo pump, hearing it beep throughout the night (I still wake up at night and wonder why I havenít heard it). I miss making his meds up every day, changing the bed, doing five loads of wash. It seems silly to miss those crazy hard, long days and nights, but I would have continued to do all the work forever just to keep my Adam here with me. I was blessed with the most wonderful, loving children. We just faced a new 'normal' when Adam was diagnosed and then when Adam died so suddenly and truly unexpectedly, we have adjusted to another new 'normal'; but we all as a family feel so lucky that we were given the gift of this wonderful little boy who taught us so much. I think one of the hardest parts of this grief journey is the feeling of loneliness, not personally knowing anyone who has actually lost their child. I feel so isolated. My biggest fear is that Adam will be forgotten -most people no longer speak of him and I find most people are also uncomfortable being reminded (by us talking of him) that he was. I know that for as long as I am alive I will try to keep my Adamís spirit alive and to let the world know that on February 19th, 1998 a precious, wonderful little boy earned his wings. For the short time he was here, he was one of the greatest gifts, I ever received and my heart and arms will ache until the day I join him
We are truly blessed to have three other children... Brian is 24 yrs old and in his last year of law school in N.Y. He is Editor-in-Chief of Cardoza Law Review. I miss him terribly and so wish he lived closer. I am so proud of him and the gentle, loving man he has become. Brian sets such high goals for himself and always seems to achieve them with hard work and determination. Rachel is 28, she was my first born and such a cherished child. She is the most compassionate, loving, caring, joyful young woman and I feel so blessed to also call her my friend. Rachel and Ken have welcomed in their first child.
Adam Christopher arrived at 7:54 p.m. January 7th...
9lbs 4oz... 21 1/2 inches long... Rachel allowed myself, Tad and Molly to be there for the birth. Adam is so beautiful... I know I am proud Nana but he is the most beautiful little baby. I feel so lucky to have been allowed to be part of this wonderful experience. Being there to welcome in my grandson is one of the most precious gifts I hold close to my heart. I am so proud of Rachel. Adam Christopher is a very lucky little boy to be able to call her mama. Molly is now four years old. She continues to show us that love, hope and joy are still around us everywhere. Everyday I thank the Lord for this little girl as beautiful on the inside as she is on the outside.
My Adam gave me so much in his short twelve years. I would have gladly given my life for his, but as we know that is not possible. I feel so blessed to have been given this awesome gift. There were a lot of days just not enough years. I miss Adam with every fiber of my being. As I sit here tonight thinking that five years ago tonight my Adam left me, the whyís never to be answered, I have come to know that we must treasure each day and be thankful for each of the gifts we receive.