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  None of the stories or pictures on these pages may be used without the express written permission of the Pediatric Stroke Network and/or the parents of these children. These stories are copyrighted by the intellectual property law. All stories are original submissions written by parents.

CJ's Story



    I always dreamed of the day that I'd become a mother. On October 2, 1997 that dream was realized when I gave birth to a perfectly healthy baby boy. I dreamed of all the things that he would be, of all the things that he would accomplish. I took my son home to start his new life, never knowing of the things to come.

    I will always remember October 18, 1997. It was the day my life changed, forever. As I picked my son up from his bassinet, I knew something was terribly wrong. He was shaking, as if the world was having an earthquake that we couldn't see. My husband and I frantically took him to the local hospital. Moments after we walked in, we were informed that our son was having seizures. My heart felt like it was going to pound out of my chest. We listened while the doctors explained that he would need to be transferred to the children's hospital two hours away. I sat at my son's bedside holding his hand as he seized, waiting for the children's hospital to get there.

    They stormed through the door of our local hospital, a team of five hooking my son up to countless monitors and putting him in the ambulance. I rode with them to the hospital, thinking the entire way that I would wake up from this awful nightmare. When we arrived at the children's hospital, my son was immediately taken to the intensive care unit.

    I sat at his bedside every day. He was in a huge hospital bed; he was no bigger than the pillow. The seizure medications that he was taking kept him unconscious. I held his tiny little hand and prayed that he would survive. Three days after our arrival, my son crashed and was put on life support. I remember standing at his bedside watching that machine move his tiny chest up and down. He had tubes and wires attached all over his little body. I could only hold him once a day.

    Two weeks later, he began to breathe on his own again. It was as if someone had removed the cloud above him, and let the sun shine on his life. It was finally over; my son would be okay. That night the nurse informed us that the doctor wanted to see us. I remember thanking God for giving my son a second chance. I called my husband, and told him to come to the hospital. I thought we were finally going home.

    The doctor walked into our son's room. We didn't give him a chance to speak. We thanked him for what we had done for our son. He interrupted, saying, "We need to talk". My husband and I looked at him expectantly. The doctor took a deep breath, "Your son has severe brain damage on both sides of his head." My legs felt week, and my body began to tremble. I reached for my husbands hand. The doctor continued, explaining that our son had suffered a bilateral stroke, and that the stroke had been the cause of his seizures. He continued for about five minutes, and then left the room. Everything was spinning. I looked at my husband. Tears streaming down my face, I begged him to make the pain inside me go away. He responded with his own tears. I picked up my son and held him until he fell asleep.

                        

    The next few days were unbearable. We listened to doctors tell us what the future held for our son. They said he would never walk, talk or even smile. I kept asking what we could do to change his prognosis, and every time the answer stung my soul, "Nothing". The stroke had taken over sixty percent of his brain.

    I realized that my life was changed forever. Gone were my hopes and plans for the future. As I told our parents the news, I remember hearing the pain in their voices. My son was the first grandchild on both sides. They tried to hold back their tears. My in-laws were in shock. My father got angry. It was an anger I had never seen in him before. My mother was silent. I realized then that I wasn't alone, their lives had been changed forever too.

                            

    Over the next year, I realized that my hopes and dreams weren't gone. They had just been changed. My son was still beautiful. He was still a blessing from above.

Today my son is a happy 17-month-old boy. The stroke left him with a lifetime of lasting effects, but he triumphs in spite of it. My son can move his body, although it is limited. He coos, and even makes some babbling sounds. He has a smile so bright it could light up the world. He cannot walk or talk and he is in no way where he should be for his age, but he is on his own level. I know that my son will accomplish things to the best of his ability. Most important, my son has let me see things about life that I would have never been able to see without him. I see the miracle of a child, the beauty of the world, and the ability to triumph in spite of your shortcomings. My only job is to help him achieve.

CJs Update 4/1/03 

    It is hard to believe it has been four whole years since I wrote CJs Story and started PSN with it. So much of the original story seems like a lifetime ago, but at the same time, it all still sits in my memory like it was yesterday. The last four years have brought a lot of new challenges, heartache and a lot of happiness.

    CJ was doing very well until the age of two. He was progressing well and at two years of age, tested out at nine months mentally and about three months physically. He had gone close to two years seizure free and while he was still severely handicapped, he was a very alert and loving child. Then, a little after his second birthday, everything exploded.

     CJ had a massive grand mal seizure. From there it seemed like we had entered seizure hell. Over the next year, his seizures got more frequent and he started having multiple types of seizures. By the time his third birthday came, he had gone from seizure free to having 50-100 seizures a day with a variety of seven different types of seizures. Due to all the seizures, he was on four medications and his progress had halted completely and he actually started regressing. On his third birthday, he tested out at a 3 month old level mentally and less than 6 weeks physically. I think it was harder than the initial stroke seeing him go back so far.

    In addition, his sleeping pattern had become unbearable. He would literally stay up for three days in a row with no sleep. After trying several sleeping medications, we finally found one that worked. Most people would consider their child sleeping from 9 p.m. to 4 a.m. a huge problem. For us, it was a huge relief. He still had nights where he would not sleep at all, but he was getting better about how often they happened.

    The third year was tough. In spite of it all though, he kept his smile that melts the world. He entered school that year and loved being around the other kids. He doesnt learn anything in school, but he does love the interaction and his teachers. I was pregnant throughout all of this and one week after CJ turned three, I gave birth to my daughter, Faith.

     That was definitely an adjustment. I was absolutely paranoid about Faith due to what happened to CJ. I slept no more than two hours a night the first few months.  I also had a lot of guilt at not being able to live, eat and breathe CJ like I was used to. But, we muddled through and learned to adjust.

     We kept playing with his medications from age 3-4 and finally found a combo that kept his seizures below 20 a day. That was a huge improvement and we started to see him starting to be alert some days again. He started his second year of school right after turning four. Things were starting to get easier. Aside from the occasional emergency room visit for seizures or fever, he was not being hospitalized like he used to.

     I also had adjusted to having two children and learned to handle my feelings about not being able to devote my entire existence to CJ. Faith loved her big little brother. Although I dont think CJ was too fond of her climbing on him and trying to feed him play ears of corn! Right after his fourth birthday, my husband and I went away overnight leaving the kids behind, each with one set of grandparents the first time we had ever done so since he was born.

     Right before CJs fifth birthday, he was hospitalized with Entero virus. He had a 106-degree fever for five days. It was horrible. We honestly though we were going to lose him a few times. But, CJ is a fighter and muddled through. He came home and returned to school.

     My husband has days where it hurts that CJ will never play ball with him, or go fishing with him or need help with his first girlfriend. But, my husband knows in those moments that while CJ may never grow up in a typical sense, CJ will always view my husband as superman with cape and all. He is a daddys boy and lights up every time Chris enters the room.  

     His fifth birthday came and it is the best he had been in a long time. He loves school, and is a relatively healthy spastic quad CP child. He has officially been labeled with profound mental retardation  but thats ok. We are ok with CJs conditions and labels. We tend to see the good in it all. Age two to five was a rough ride, but there were so many smiles, so many kisses blown by him to me. Every morning when I wake up and go into his room, he sees me out of the corner of his eye and flashes a huge smile. THAT is what makes everything worthwhile.
 


Rachael, Chris, CJ & Faith Hoffman
 
 

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This page last updated 4/01/2003