Parenting a child after massive brain surgery is no small feat. There is damage to deal with. Brain damage…. The brain is a strange thing when it is only 4 years old. As a parent, I know i have one more year of hyperneuroplasticity…you know, that thing where a child makes most of its brain connections between ages birth to 5 years…its called neuroplasticity. Yes, so there is damage and in the next year we have the greatest chance to heal John John’s brain from it. Of course, we are planning on the best case scenario here. There is a balance between hopes and reality, but in this area, we are only focusing on his future function.
Emotional volatility: my son goes from happy to tears and back to happy in 10 seconds flat. Otherwise known as “man that kid has a healthy pair of lungs on him”
What damage was caused exactly: Emotional volatility is something John can not control. The center that controls his emotions is called the prefrontal cortex. This was damaged by the surgery when the tumor was removed. When the brain shifted after the tumor was removed, the brain smashed together and had a massive pressure shift that damaged cells in this area. His ability to engage with other people was also damaged. He does not voluntarily engage with others, outside of Me…duh, I am his lifeline, his mother. Damage to this portion of the brain can cause impulsiveness. Yes, he is impulsive. This area of the brain controls focus, planning, impulse control, emotional control, empathy, judgment and insight. All areas of Johns ability to control these things have been damaged. John does not have master control over these functions. The feelings of empathy, judgement, and insight must be imparted. It is a moment by moment teaching opportunity. If you see him melting down, please back away and allow me to reorient him…I understand the ins and outs of this process and it is not something anyone can help with. I think that because I was his constant throughout this process, I am his source of comfort and reason. He does listen to me. But, the commands I use are specific to his understanding and very specific to what i know he can comprehend.
His right side moves all at the same time.
What damage was caused exactly: The premovement neuronal cortex was damaged when his brain shifted back after the tumor was removed. But, it was also pressured into an unnatural position from the tumor. One of the first signs of the tumor we saw was the right foot turning in at the toe. This was caused from pressure on the brain. Not all of it was in the prefrontal movement cortex, but the ataxia is. The parietal cortex is also responsible for telling the muscles what they must do to organize themselves into their proper action to execute a movement. John’s tumor took up a large portion of his parietal lobe in the left hemisphere of his brain. Removal of his tumor caused major damage to his parietal lobe. He brain is learning to rewire and control the right side of his body. We have seen leaps and bounds in therapy. He has gone from not being able to move the right side of his body at all after surgery to, walking with a walker, to walking without a walker, to precision hand motions with his hand .
He just won’t eat.
What damage was caused exactly: John has a problem with drooling and swallowing. He seems to have some brain damage that hasn’t been defined. It is a mystery really. Is it the cancer causing the deficiency of appetite or brain damage? It is a real source of pain. He has lost 7 lbs since he has been home from the hospital. that’s nearly 1/4 of his original body weight. Oh Lord, I have served this child a lb of bacon for breakfast and championed him in towards the last bite…Lord knows I have put butter and whole cream into every bit of macaroni I have offered him…but, i still fall 2800 calories short a week at this point in his diet. He simply can not consume enough to sustain his body weight. I have offered him every flavor of ensure known to man…He just won’t drink it. What does a mother do? At this point, I have no answers. The doctor is making murmurings about a feeding tube. We will probably have this discussion at the next doctors appointment.
He is not potty trained.
Well, lets just get real here. The mantra of potty training is, your child won’t go to kindergarten wearing diapers. Yeah, well, Yes he will. I’m just saying. He will. He can’t walk to the potty fast enough to pee in the toilet. He can’t sit on the big potty safely because he can not completely control the muscles on one half of his body. He really feels horrible when I have to give him a clean diaper. I am really sorry, but he may not be able to make a kindergarten deadline. And, thank God, because His shorts wouldn’t fit after a 7 lb loss without the diaper!
There is this mess of a child that I expect other people to forgive.
Well, lets just get real here. There is a lot of humility involved in this situation. I have a brain-damaged 4-year-old son that is emotionally volatile and does not know his own limits. I simply can not ask another person to understand, except to realize that i have a very hard time trusting that anyone beside me can take care of this sweet boy who is fighting for his life. It takes a lot of gentleness and time to help John work out the issues caused from brain damage. I am very reluctant to give him over to a person aside from myself to afford him the empathy and “free pass” he has earned through the hardship of life. He is simply a little boy trying his best to make it through a world of scary expectations and people who judge. Trying to hold on to his mommy the best he can, while I quell his anxieties…..with a secondary glance to conversations, relationships, and invitations. I’m not really sorry for the lack of attention, just the lack of understanding in this situation…..I am busy right now, perhaps later I will not be so busy….
Trying my best to parent a wonderfully normal child, and one with brain damage,
P.s. I must say, that I feel the pressure in public situations where my son does not behave within the realm of normal behavior. I try my best to diffuse difficult situations or situations where ignorance is at play. But, I have had may a judgmental person declare me a bad parent with that stupid hairy eyeball look. I smile back at them. I figure at best, this is in ignorance… He is just a small child. My parenting skills may be lacking based on popular opinion. But, I will be glad to try my best to guide him through a screaming meal in a restaurant in a new setting with food he may cultivate a desire for, than see him never want anything aside from macaroni and cheese on a couch because he doesn’t fit in at a restaurant. He will learn to cope with his limitations over time, but there will be many situations between now and then that we must use as learning experiences.