Coping with the Loss of Health: How My Son Survived Guillain-Barre Syndrome and Encephalitis

loss

Without health, you have nothing. When you are healthy, you feel like you can accomplish anything. You have focus, energy, and drive. In contrast, when you are ill, you feel like you are functioning through quicksand and it takes everything in you to keep your head above the mud.

Before October of 2015, my son, Jy, was a healthy child. He was seven-years-old at the time. He had never even received antibiotics. He had perfect attendance in school. He played on a very competitive club soccer team. He was used to scoring many goals and being one of the fastest kids on the field.

Loss of Health

Jy Black encephallitis, Guillain Barre Syndrome
11-12-2015 Flight to Primary Children’s Hospital Salt Lake City

In October of 2015, my son had received the flu mist, and he developed a bad reaction to it. I had mentioned this situation in a previous post. I also wrote a heartfelt post on losing the image of a “perfect child.” He developed the flu, went into a coma (for about three weeks), and was paralyzed (quadriplegic). He had encephalitis and Guillain-Barre Syndrome. The flu mist has been taken off the market (so don’t stress about that), and he had a rare reaction.

Life After Loss of Health

Jy had to learn how to eat, walk, talk, and go to the bathroom all over again. When Jy first got home from the hospital, I was so happy to have him alive. I was in complete denial that anything was wrong with him. After all, he was walking, talking, eating, and breathing again. What more could I want?

I posted an update on Jy about six months after his hospitalization. With time, I learned that he struggled to sit still in school. He had trouble with his emotions and understanding jokes. Processing became difficult for him. He couldn’t react on the soccer field like he used to. He would fall over or get hurt easily. When Jy couldn’t understand something, instead of using his words, Jy would resort to crying. Kids called him cry baby. He would come home from school almost every single day in tears. He couldn’t sit to do homework. I had to give him mental breaks. We would work for ten minutes at a time, and I would let him run around the house to release his energy. Sometimes, he would just cry. I let him cry, and talked him through his emotions.

He didn’t like loud noises and had sensory perception issues. He developed ADHD, visual processing disorder, and auditory processing disorder. When Jy would get nervous, he would fidget with his fingers, chew on objects, or suck his shirt until half of the front was wet. He wouldn’t understand danger at times. Once, he hopped on the back of a running treadmill to get this lady’s attention because he thought she was me. He didn’t think to walk to the side and get her attention or even check if she was me. He scraped his chin and got a bloody nose from this incident.

Jy’s reading level dropped from about the 65% to the 10% for his age group. He went from almost double above average in math to average because he struggled to process story problems.

Jy needed over a year and a half of extensive traditional therapy, counseling (for his emotions), ADHD medication, other medication for his mood, and finally holistic medication, which he is still currently on. He started special education in January 2017 to help with his reading and processing.

How Does Jy Relate to You?

During Jy’s recovery, there came a point where I had to “wake up” and face reality or the truth. Jy may recover to the point where he won’t need special education assistance in school or play soccer the way he used to, but he is not there yet. I had to mourn over the loss of my child before his health injury. I couldn’t keep living in the past and pretending that he was his “normal” self. Jy wasn’t abnormal after his injury. I had to accept Jy’s new health so that we could rise up from there.

If you have a loved one or you have personally had a health problem (including mental) that has altered your lifestyle, then you can relate to this post. Here are a few steps that helped me get past the loss of Jy’s “healthy” self.

  1. Grieve. I tried for the longest to “be strong.” I thought being strong meant that I didn’t have to show emotions. This is far from the truth. Everyone has emotions. We aren’t robots and can’t turn them on and off. I allowed myself to feel every emotion that came to me. I had every right. My perfectly healthy child landed in a coma and paralyzed. You have every right to all of your emotions. You need to free them. 
  2. Get professional help. Once Jy got past the acute phase, I turned to any resource that I could for him (e.g., utilized his pediatrician, therapist, school teacher, and church teacher). My opinion on Jy was important, but it was also slightly biased because he was my son. I wanted to see all the good in him, so I looked for it. Taking the opinion of several people who worked in close contact with Jy, helped me get the necessary resources for him. If multiple people who worked with Jy indicated he needed something, he probably did. Get several opinions on the best resources for you. It’s best to not be in denial if you need help. Seeking the proper help could help you recover faster. 
  3. Plan/Act. Once I collected the evaluations of those who worked with Jy and studied the available resources for him, I came up with a plan. I didn’t want Jy to have too much on his plate, so we did therapy in a systematic fashion. We began with traditional therapy first and worked our way to holistic and psychological. Decide the best plan for you or your loved one and take the needed steps. You can always alter your plan along the way. (But you are always moving forward!)
  4. Reflect. There are times when I get frustrated or sad when Jy can’t read or play soccer as he used or his emotions are difficult to control. On days that are tough, I remind myself to reflect on how far Jy has come. Give yourself credit for how far you or your loved one has come. Have gratitude for your current health and look forward to getting better one step at a time.

We don’t get to choose our trials, but we can choose how we react to them. ❤️ Time to live YOUR best life with the health you have been blessed with.

Blog Collaboration on Loss

As I had indicated in my announcement on Monday, this is a collaboration post on the theme of Loss. If you are interested in reading other posts on “Loss,” please click on the links below to read more. Each blogger provides positive and helpful insights on how he/she coped with and conquered a loss. Know that you are not alone and there is a way to get through loss.

Here are the links to all of the collaborators:


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