My Brother Is Constantly In Danger Of Dying
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Politics and Activism

My Brother Is Constantly In Danger Of Dying

And it's all due to these seizures that put him on the brink of death.

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My Brother Is Constantly In Danger Of Dying
Irene Yi

My brother just had a seizure.

It's not his first, and, unfortunately, it most likely won't be his last. In fact, it's quite a common occurrence.

For those that may not know this, my little brother, Leonardo, has cerebral palsy along with a severe case of seizures. He will be 5 years old this July, and he cannot walk, talk, crawl, sit up by himself, feed himself, or really do anything besides lie down and watch us. He's very sensitive to loud noises and sudden movements, and he gets tense when there are lots of people around. This doesn't mean he's any less of a person, or that he's not extremely bright. Leo is incredibly observant and analytical of his surroundings; he can read a situation in a heartbeat and react accordingly, in his own way. He can make verbal noises to express his agreement or disagreement with what's going on. His smile is the most beautiful thing I have ever seen, and we all would give the world just to see it more often.

Starting from the beginning, things didn't go smoothly. We had no idea of the gravity of the situation, though. Leo was born two weeks prior to his planned arrival date, and he could not eat by breastfeeding; we didn't see the red flags when they kept him in the hospital for an extra few days before he came home for the first time. A month or two later, he could not lift his head very well; suddenly, he was sixth months and could not roll over, and he was a year old and could not crawl. At one year old, he was diagnosed with cerebral palsy, so we took him to physical therapy and optical therapy every day; we drove down to Spectrum Health and Mary Free Bed and Helen DeVos Children's Hospital and everywhere we could find. He made incredible progress, and he was able to sit up and support himself with his arms; there's still a magnetic board on our refrigerator with therapy goals and targets written all over, one of which says "Support with arms on one side." Leo was able to speak simple words in Chinese. He could say the words for milk, mom, dad, grandma, and sister. He smiled brightly and laughed out loud. He grabbed onto his toys and banged on the piano keys. In 2013, we found an opportunity for my mom and Leo to go to China and try a new intensive therapy place; the success rate there was extremely high. So we went. And Leo did so, so well. He was able to enjoy the outdoors, see the sunshine, be kissed by the gentle breeze. In America, he especially liked to sit next to the tulips in our front yard. The therapy in China was good for him, and the intensity and frequency it gave allowed Leo to improve at a fast rate. He even came back to America at one point and joined the Conductive Learning Center classes, where he did finger painting and played with other children with cerebral palsy.

This all was three years ago.

You see, there was a catch. My brother showed strange signs of surprise, or even shock, from a very young age. At four months, he would jerk his head in "surprise" at loud noises; we thought he was just scared because he was young. He never grew out of it, though, and he began to have seizures as well. In the beginning, his seizures were a series of movements characterized by sudden limpness and a relaxation of all his muscles; this would last for minutes on end. It was so, so scary. Once, I was holding him while he had a chain of seizures, and I was so scared that my mind went numb. My heart dropped into my stomach and my insides felt like ice; my tears didn't even have enough courage to flow out. Leo's seizures not only cause him an indescribable amount of pain, but they also backtrack his progress; everything he accomplished through therapy was lost to his seizures. At his worst, they happened every day, many times during the day. He lost his ability to chew solid foods; he lost his ability to play with his toys at will; he lost his ability to step forward with confidence and the help of a family member's support.

We went to place after place, hospital after hospital, doctor after doctor to help him. My mom went to Buddhist temples and Taoist temples and monk temples in the mountains and prayed and prayed. Nothing worked. At long last, my mom found a traditional Chinese doctor that was finally able to help him (and many other kids with seizures that have caused them to lose the ability to do things they used to do). "Help" is an understatement; Dr. Li saved my brother so many times. He formulated special herbal Chinese medicine for Leo, and altered it according to constant updates on his situation. He also recommended moxibustion to help control the seizures; this worked for a while.

Dr. Li taught my mom about Leo's condition; Leo had too much "cold" heat in him that it caused an imbalance in his inner Yin/Yang heats. My mom and her new friends (the moms of other kids like Leo) soon became experts on these parts of traditional Chinese medicine. Last summer, Leo had a fever he couldn't sweat out; it lasted for months before Dr. Li found a way to save him. It was at around this time that the nature of his seizures changed. They now came because of his phlegm buildup along with his inability to cough it up himself (due to his seizures taking away his skills); this would cause a lack of oxygen to trigger a seizure. His seizures were now characterized by a tenseness in all his muscles, and his entire body goes stiff. Leo's eyes widen in desperation and terror because none of us knows what could happen next.

It is terrifying. It is truly so scary. Every time Leo has a seizure, he's flirting with death. It's heartbreaking and horrifying to think that I've held my brother as he struggled to breathe to live. He's gone under several times and once, we thought he was gone; my mom saved him with CPR and mouth-to-mouth and prayers and desperate, desperate love. Last summer, my mom and I were up all night monitoring Leo, calling the doctors in the middle of the night for help. We bought our own oxygen tank and phlegm sucker so we wouldn't have to make more trips to the hospital than we already have. His seizures cause him pain we can't even imagine, and we've had to give him shots during more sever seizures that will make him go numb and fall asleep because pain that intense prolonged can cause more irreversible damage than it already has; it's almost like anesthetics, only given after the pain starts. The other day, my mom called me into her room and showed me a bag full of syringes; each one was one time that we had to give Leo a shot because of the unbearable pain. There were 21 syringes.

No doubt we've had to make adjustments to our lives. Leo, in his current condition, is so, so sensitive. He needs constant care, not only to monitor his condition, but also because he feels safer when someone is around. If he gets too nervous, he tenses up and has a seizure. He cannot feel any cold breeze, or any breeze at all, for that matter. If he does, the "cold" heat will go straight into him and blow out his last candle. He also cannot be too hot; if he sweats too much, he will lose too much of his "warm" heat. He cannot eat too much. Since he doesn't move, he can't digest his food as well; anything extra will cause phlegm buildup, and thus, seizures. If he's in the living room, we turn on the air conditioning in the bedroom and open the door (and vice versa: we turn on the AC in the living room when he's in the bedroom) so some of the coolness can get to him without him feeling the wind. He can't have meat or oil in his foods, which consist of the freshest, healthiest veggies blended together with rice or noodles to form his own special recipe.

It might seem like a hard way to live, but it's really worth it to help him. Anything we can do to help, we do. Anything to prevent a seizure. Anything to avoid putting him in pain. We have learned so much from my brother. Life is so, so precious; health is so, so precious. In Leo's tiny body, there has been more medicine and herbs and strategies to help him than any other person I have ever met. During his month-long fever, he got a medication recipe so intense and strong that it would've been fit for a grown man. The Chinese herbs that go into each pot of medicine have so much nutritional value that you could live off of just the medicine and no other food.

You learn to love what you have and appreciate your loved ones while they're still around. Everything is put into perspective. My everyday grievances, while not invalidated, are nothing compared do what my brother goes through. Cough syrup may taste bad to me, but I can't even begin to fathom the sour and spicy and bitter medicine that my brother has to drink daily. My mom is always happy, every minute that my brother isn't having a seizure. She says that once you see what hell looks like, every second of not being in hell feels like heaven. She says that through Leo, she gained an understanding of God. She has true faith in all: she understands the suffering Jesus went through, she settles her heart and soul like Buddhism teaches, she sees holiness in all parts of life. My mom says that Leo is so pure and holy, like Jesus was. Leo suffers every day and is in a constant war so those that love him can understand life better; its his sacrifice to us because of how much love we have for each other. My mom says that she is so thankful Leo is able to teach her the true meaning of life in her own short 43 years; some people go their entire lives without truly understanding what matters and what doesn't.

I don't know what's going to happen. Everything is unpredictable and nothing is guaranteed. I can only hope, wish, pray. For the last four years, I have spent every 11:11 wish on Leo's recovery; it's gotten to the point where I bend the rules and wish a 1:23 wish, a 1:11, 2:22, 5:55, 4:56, 12:34 wish, and so on, until the clock just sighs and wishes that I'd stop wishing every chance I get. Besides wishing, I can also be present. In my short stay in China, I can treasure every moment I have with my brother. I can let my soul be at peace because I'm here with my family; after all, my mom and dad have both put their souls at peace, and it's helped us all.

My brother just had a seizure, but we will comfort him and hold him tight. He will know that he is safe and loved. He eventually come back around and relax, bathe in our love and warmth. He will get better. He will.

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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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