My Perfect Son
Written for Johnny D'Antona, with all my love, mommy.
Just a boy who loved to run and play with no cares in the world, just living day by day.
Play dates and parties, swinging on swings too young to know what your short life would bring.
Within a few hours it would all change forever, so small and fragile you will never remember.
The life that you knew, where you were so safe and secure, was taken in an instant, you will not be who you were before.
Struggles you'll face, each day of your life challenges you'll be forced to overcome, you are my hero, you are my life, you are my perfect son.
As far back as I can remember, I always wanted a family. A wonderful husband, a boy first then a girl. Like many women in this world, I passed up going to college not wanting to start a career, knowing when I did have a family I would stop everything to raise my children. I married my husband in November of 1992, we bought our own home in July of 1993 and had my first child, a boy, in October of 1994. As planned I quit my job in order to raise my son, John Joseph. He was so handsome and loving. Two years later in August of 1996 I gave birth to my second child, a girl. Amanda Maureen. She was the most beautiful little girl I ever laid eyes on. Everything in my life was going along as if I wrote a script and we were all acting it out precisely the way I had written it.
My family was my entire life. They were the most beautiful, happy, healthy children any mother could ever ask for. They loved to be outside, playing, going on their swings, riding their bikes. Just like any child loves to do. My life was beautiful. But soon, my life would spin out of control. Johnny was three years old and Amanda was a year.
Our Lives Change
It was July 17, 1998. Johnny, myself and Amanda woke up as if it were any other day. The kids woke up and I gave them baths. We were getting ready to go on a mini vacation in a few days. Johnny came into my room and said he was tired and I told him to lay down and take a nap. He did. He woke up ten minutes later with a fever of 104.7.
My husband came home a little while later and I told him that Johnny was sick. We gave him Motrin and Johnny fell asleep again. I then went to the hospital to visit my mother who was waiting to have open heart surgery. While I was at the hospital, my husband John called me and told me that Johnny started to vomit and the fever was not breaking. I went home immediately. When I arrived home, my husband was changing Johnny's clothes, he noticed a little red spot by his groin and asked me if Johnny had hurt himself on his bike or something. I said not that I knew of. At around 10:00pm Johnny and Amanda went to bed for the night.
At 12:00 in the morning, Johnny woke and told me he was thirsty. I knew he was still running a fever, so I got up and went to him with a glass of water, afraid he would dehydrate. It was a very hot night, so Johnny went to sleep in only his underpants. When I went to his room and opened the light I saw that he had more red spots on his body. I counted about six of them in various places (on his chest, back, behind his ear, his arms etc.). I just knew something was not right. I called his pediatrician and explained the situation. He asked me to put pressure on the spots and see if they turned white when I touched them, like a sunburn would. They didn't. He then advised me to take him to the emergency room. My husband works nights, so I called my in-laws and asked if my mother-in-law would come sit with Amanda and if my father-in-law could take me and Johnny to the emergency room at Mercy Hospital in Rockville Centre, New York. I remember my father-in-law driving so fast and thinking to myself, "why is he rushing, Johnny only has a bad rash". Thank goodness he went as fast as he did ( I would find out later).
When they took us into an examining room, Johnny was so scared, I kept reassuring him that everything would be ok. Johnny's rash started to worsen right before my eyes. He started turning purple all over his body. By the time my husband arrived Johnny was unrecognizable. He was full blown purple. I couldn't understand, my son was fine hours ago. My husband and I just sat and cried, fearful of the unknown. The doctors from Winthrop arrived and they examined Johnny, they then asked us to step outside with them. They proceeded to tell us that Johnny was gravely ill and they would have to put him on a respirator to help him breath. They told us to trust them, and we did. We went back in to see Johnny, he knew something was wrong, because he asked me to give him a kiss and a hug and then he looked at me and said "I love you mommy". I told him I loved him too. We stepped out so the doctors could work on Johnny. After they intibated him they told us they were ready to transport him. They told us he was so sick he may not make the transport. What was a ten minute ride to Winthrop seemed like hours. I was screaming in the car while my husband drove behind the ambulance. We couldn't go in the ambulance with him because there were three doctors in there working on Johnny as they sped to the hospital. They had Johnny in a room before we could get out of our car.
When we reached the floor where our son was, a doctor pulled us over and asked my husband to go to admitting and sign the papers for my son. While he went, another doctor came and pulled me, my father (who was waiting for us when we arrived) and my sister-in-law into a small room. I'll never forget her words. She told us that Johnny was gravely ill, that there was no way he could survive what he has. She asked me to call my family and priest to come. Johnny only had about two hours to live. My life shattered right then and there. How could I call my mother, who is in the hospital and tell her to come if she wanted to see her grandson for the last time? How could I call my in-laws? I knew I wouldn't call my priest. It wasn't real.
We later found out Johnny had what is called Meningococcemia. Third stage meningitis. The worst and deadliest form of bacterial meningitis anyone could get. It is when the blood was not able to clot and it was seeping through his skin, turning him purple and killing everything inside of him. Johnny could not survive. He received several blood and platelets transfusions to help keep him alive.
Before I knew it, our entire family was there with us. All of our friends had heard and rushed to be with us. Two hours had past and Johnny was still holding on. Then four hours, then twelve, then twenty four. Johnny made it. The doctors killed the infection. But the damage had been done. They had to do emergency surgery on his legs and left arm. They had to make incisions in his legs and arm to release the toxins that were in his system.
As days passed there were still no change with this legs. His arm came back little by little. We were in Winthrop for a little over a month. On August 12, 1998 they transported us to New York Hospital - Cornell to the burn center. They said the damage the blood did releasing into Johnny's skin was like having third degree burns.
When we arrived at Cornell the doctors examined him. Both of his legs were black, with no sign of healing. They were like leather. On August 13, 1998 they amputated Johns legs. His left leg above the knee, his right below the knee. He also lost three fingertips on his left hand and the top of his left ear. They also found deterioration in is left elbow. They had to take the muscle from his side and bring it down into his elbow. We are still waiting to see if he will have full motion of that arm. His entire body is scared. His face, arms, legs, backside, every inch of him, even a front tooth. We stayed at Cornell for a month and a half.
Johnny came home a few days before Thanksgiving. What a blessing and a way to give thanks. Being home was both the happiest time and the scariest time for me. We weren't in our home, because we were having major adjustments made to the house to accommodate Johnny and his wheelchair. Adding rooms on one floor, taking away rooms on another to make other rooms bigger. Widening doorways, building ramps, adding railings etc. We came home from the hospital and moved right in with my mother and stepfather.
It wasn't until a few weeks after being home that everything settled in and reality took over. When your living in a hospital, running back and forth each day you don't have time to sit and absorb fully what was happening. You just deal with it the best you can and do everything in your power to get your child well and home. I referred to it as the three H's - Healthy, Healed and Home. That was my goal for my son. But when I did get the time to sit and absorb it, it was as if all of my breath was being taken from me again. There are pictures of my son all over my families home. How happy and healthy. Standing and running. Playing ball and swimming. Riding and pumping on his swings. It was time to scream and let it out. I locked myself in my mothers room with a photo album. Looking at pictures I wanted to forget but promising myself I would always remember. His perfect legs. His tiny feet. How would I ever get through this now? But I had to. I walked out of the room, and looked at my son. This is how. I have him, he's here. My mother said to always remember, I could be looking at just a picture right now. She is right. I have him and he his absolutely perfect. He's my son, and one day soon, he will be walking next to me. He will be running and playing just like he used to. He is my hero, my Hercules.
After his legs are completely healed and his knee stretches a little more we will concentrate on getting his legs on. But until he can be comfortable in his liners with NO pain, we will wait. There is no rush at this point.
When Johnny walks for the first time again, I want him to be happy about it, not scared or in pain. I want him to know it is a good thing. This is the only thing he can do now. For the rest of his life, everyday, is get up and put on his legs and walk.
On July 9, 1999 Johnny put his legs on again. When he was sitting there with his legs on, my sister-in-law and best friend where sitting with me. We were all telling Johnny how proud we were of him, after we told him, he looked up at me and said "mommy, I want to walk." We all looked at eachother and I stood up and held my son by his arms. Johnny walked across my living room. With tears in my eyes, I looked at my son, standing there holding me. He took his first steps and I knelt in front of him and he kissed me.
What more could a mother ask for?