Wednesday, July 26, 2006

Happy Birthday Cody!!

Today's heart story is submitted my heart mom Sunshine Deason.

"Live today , like there is no tomorrow" . This is what my Little Granny used to tell us when we were younger . These words do not seem like much , but when you do not know what tomorrow brings , this is a huge statement . You learn to think about things in a whole different perspective. I had no idea how Little Granny's words would ring in my ears a year after she had passed away .

I was young, very young. I was a high school drop out, had no job, wasn't married and I was a mother. We had no home of our own, we lived with Nelson's parents. Our world was about to take a crazy loop , like the ones on a roller coaster ride at the state fair. In the early morning hours of July 26th, 1994, just two days after I turned eighteen years old, I had became a mother for the second time. My beautiful son was born.

Everything seemed just fine with Cody after we brought him home from the hospital . Everyone was adjusting to life with a newborn again, although we had a few issues with Brandon our older son for the first few days.

On a hot August afternoon, the boys both had a doctors appointment, Brandon had a horrid summer cold, and Cody just had some of the newborn crud. You could see the surprise in my face when the doctor told me that Cody needed to be put into the hospital right away because he had pneumonia.

After being in the hospital for a week our pediatrician came in and wanted to run a few more tests on my baby, because she said things just were not going as they should have been Wednesday morning they came in to do all the necessary tests. Later that evening, the doctor came back in. This time she had another doctor with her, so immediately my motherly red flags went up. She told us that there was " something not quite right" with our baby. They wanted to set up an ambulance transfer to Wesley Medical Center in Wichita for the next day. We sent Cody off to Wichita in the ambulance with my mom, his NaNa , while we went up a few hours later, so that we could make arrangements for a sitter for our other son Brandon. When we got there, we were greeted at Cody's hospital room door by two doctor's.

We were told that our seemingly healthy baby boy was born with such rare heart defects that he was one in a million. We were told that our baby only had what amounted to half of a working heart. His little heart actually had three different defects. Cody had Hypoplastic Left Heart Syndrome (HLHS). They told us about our options, which were to either take our baby home and let him die , or, we could take our chances and place him on the operating table the next morning. Taking him home was never an option for us. We were chosen to be Cody’s parents. Giving up on him was not a choice for me, for us. As I handed my baby over to those nurses , it was then that I realized that that was MY baby. My own heart felt like someone had reached inside of my body and just yanked!! I was hurting so badly inside. I would have gladly traded places with him, so that he did not have to hurt anymore. Cody made it through that surgery, as well as two others that followed .

I was the mother of two babies, yet I was torn between both my children. They both needed me. One needed me because I was all he knew and I had been the one who had taken all the care of him for nineteen months. The other needed me because he was so terribly sick all the time, and he needed the love that only his mother could give him but at times even I as his mother was unable to give. Who did I tend to? Which do I go to first , if they both should cry?!

Just a few short well lived and well- loved weeks after Cody turned three years old, we were once again Life Watched to Wesley Medical Center. This time the doctor told us , that our child is in Congestive Heart Failure (CHF). To our surprise, the Doctors told us that our son was probably going to die. My head felt like helicopter blades whirling around.

After another day of all day testing , we were told that the only chance we had for Cody's survival was a life saving heart transplant. My heart felt like it was weighed down with lead balloons. I could taste the vomit rising in my throat , as the doctors were explaining what we needed to do next. I remember sitting in the waiting room between my mom and Nelson shivering with fear, mentally planning my three year olds funeral. How do I tell Malcolm and Brandon that their little brother was dying? How do I keep his memory alive so that Derrick who was not even a year old, would never forget him ? How do I call my baby sister , who had been having a tough time with her own personal life, and tell her that her nephew ,whom she loved as her own son may not make it? How do I call my father and tell him that the grandson that he had never met was going to die? All of these thoughts were running through my head at the same time.

So began the waiting game. We had to come home get set up with a life team that was on stand by 24 hours , a day 7 days a week. These wonderful people were willing to drop everything going on in their lives when "the call" came. We had to get pagers so that when "the call" came in we would get the page and set into action. Cody was officially put onto the United Network for Organ Sharing (UNOS) transplant list on October 9th,1997,one day before his baby brother turned a year old. How long would we have to wait? This I always wondered. As it turned out we never had to put our "plan" into motion because Cody had gotten sick on us again. On October 21st,1997, our doctor decided that it was in Cody's best interest to be admitted to the hospital, beginning an all day telephone conference with doctors in Great Bend, Wichita, and Denver. It was decided that in order to keep us on the transplant list that we would need to be in the hospital in Denver. Great. Another Life Watch transfer. All was set up for a transfer out that day. Off we go. This was the first time I had gone with him via airplane, and boy howdy what a plane ride that was.

This started another round of the waiting game, but this time we were in the hospital, in Denver , with no family except my mom was there for us. Nelson and my Mom had to leave their jobs so that they could be out there with us. Cody was in the hospital for Halloween that year, so he did not get to go Trick~or~Treating, and he was so sad about that. He had the perfect Batman costume all picked out. He did however get to go to a Halloween party in the hospital. He was able to still be the best Batman in all of Colorado.

We had good days, and we had bad days. There were days when Cody was pissed off at the world and wanted no one , not even me , to touch him. That broke my heart into a million little pieces. There were times when doctors and nurses came into the room , and those where the people that Cody called his "friends," while it was us, the ones that love him that he treated as the enemy. I can look back now and laugh about most of it , though.

We never let our fantasies get into the way of reality, we always knew that there was a possibility that we may never get our chance at tomorrow!!! We did live, life each day like there was no tomorrow. We made sure everyday that Cody knew how special he was not only to us as his parents but to our family as a whole.

Nelson and my mom (Cody's NaNa) were going to head home on Wednesday November 4th, so that they both could work for a few days, get some money . On the night of November 3rd, Mom and I had just gone downstairs to the cafeteria to eat when Heidi, our coordinator came into our room and told Nelson that they could not go home the next day because we had just gotten our call. I was happy, sad, scared and depressed all these emotions coming out of me at the same time. I was happy because we were given a second chance to love Cody all over again. I was sad because I knew that somewhere there was a Mother out there heart- broken because her precious child was dead, and I was sad to know that another was as hurt as I was happy. I was scared from the fear of what kind of life was ahead of us. I was scared of the responsibility that lie ahead of me now as the mother of a child that was given the ultimate gift of life, a second chance. I was depressed because while my family got together to celebrate the new life Cody was given, there was another family celebrating the life of a child that was taken a way at too young an age.

At 10:35 PM, on November 3rd,1997, I walked the longest walk of my life as I carried my baby down that long, long hospital hall. I carried him down to the operating room. The smell of Cody's skin that night, is a scent forever etched into my brain. The feel of his tiny body holding onto mine is a feeling that I will always remember. The way he clutched my shirt, like he knew something drastic was going on. If I close my eyes and remember , I can still hear his little voice asking me " please mommy don't cry, I lub you." Oh, how at that moment in life all I wanted to do was to take my baby and run with him. I knew that this was the best thing for Cody, so I kissed him and told him that Heidi was going to be with him , and that when he woke up that he would have his new heart ,and he would be able to play Power Rangers with Brandon again. I kissed my son and walked away leaving his life in the hands of the doctors.

Cody is now an eleven year old boy that love sports. Being Cody’s mother is an honor. He has taught me to not take things for granted He has also helped me to remember my Little Granny's words, " Live today like there is no tomorrow". Do not hesitate to tell your loved ones that you love them, after all Do you know what tomorrow has in store for you?

Cody has helped me to be the person that I am today. He has helped me to be the kind hearted, understanding, loving mother that I feel I am. Without him, I would not be me.

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