This week I learned that one of my cousins was diagnosed with cerebral palsy. He was born at 25 weeks gestation, two weeks earlier than my son, Tigger. They were the same weight although my cousin, Smiles, was a little bit longer. He spent over 100 days in the same NICU as Tigger and was released about a year ago. He is an adorable little boy who is full of smiles (hence my name for him). And despite the unknowns ahead of him, I think he'll be just fine.
I don't mean this in any way to distract from the challenges that he is facing. After learning of the diagnoses I had to look up what cerebral palsy is. I had heard of it, but didn't know how it worked. Interesting enough, The 2nd website listed under cerebral palsy was from KidsHealth.org. After reading up on it (from a couple of different websites) I can understand why. CP typically manifests because of brain damage caused from before birth up to five years of life. For those that have had children born prematurely you probably had a health professional sit down and talk brain damage with you. Tigger had a level 3 brain bleed that we know caused some damage. What's strange is that there is very few ways to tell the level of debility that the bleed will cause. The levels, 1 through 4, are just ways of assessing the damage to the tissue, but since the brain can be a puzzling thing, just because the tissue is damage doesn't mean that it will have an affect on the abilities of the individual. With Tigger, we know that bleed caused his gross motor skill development to be delayed. The usual pathways the brain uses to learn things like walking, talking, and potty training, were destroyed so the brain has to find a new, longer, path. So far Tigger has hit his developmental milestones - it just takes him longer.
Knowing about CP is similar. They don't know exactly what causes it and there are three different types of ways it can manifest but there is no set result of having it. Some may be severally disabled while others may have limited impairments. The thing that is so terrifying is that there is no cure and there is no way of knowing ahead of time what is going to be the extent of the difficulties. All that is know is that the child will be limited in some way. As someone who has faced the unknown I can say that it is terrifying.
If you know what to expect you can prepare. If you know what is going to happen you can act. But when you don't know what is going to happen or even what you could expect there is very little you can actually do. Doing something, action, is a way of relieving stress. Whenever there is a tragedy you'll always see people rushing to DO something about it. Natural disasters are easy things to act on. Gun violence, bombs, or acts of terror are a little more complex, but again you see people tightening security and trying to pass new measures designed to keep it from happening again. With an illness like diabetes or cancer their are established treatments and options, even if you don't know which one you'll need, you can start researching them. The sudden flurry of action is not always useful, but it makes people feel like they are doing something about the situation and trying to fix it.
It is hard to do anything when you don't know what needs to be done. If you sit still you appear to be apathetic to your situation. But if you rush about tying to DO something you may very well wear yourself down doing nothing productive. The mental and emotional toll are heavy as well as you try to wrap your brain around the unknowns. Perhaps the best way to describe it is that you body is ready for action - your fight-or-flight response is active, but there is nothing to fight or to flee from. Robison Wells has an anxiety disorder which manifests itself by turning his fight-or-flight response on and not shutting it off has described it feeling like he was being chased by wolves. That kind of emotional stress takes a toll.
But as I said, I feel confident that Smiles will do just fine. His parents are just great people, but people who have seen loss and yet know how to smile, laugh, and celebrate the joys they have. Smile's mother started a blog when he came out of the NICU called "A Laugh or Death Situation." Mama Crazy and her husband, Senior Guapo, decided to choose laughter over tears. When you hold Smiles you can't help but notice his smile. Regardless of what challenges he may face, he has already faced so many and yet still has such a wonderful smile. Yes, the unknown is truly terrifying, but I think that the film "Rise of the Guardians" (2012) got it right. When the nightmares are around you it's surprising how a little bit of fun can help dispel them.
I look forward to helping Smiles as he starts this new journey of his as well as experiencing the smiles he freely gives.
I don't mean this in any way to distract from the challenges that he is facing. After learning of the diagnoses I had to look up what cerebral palsy is. I had heard of it, but didn't know how it worked. Interesting enough, The 2nd website listed under cerebral palsy was from KidsHealth.org. After reading up on it (from a couple of different websites) I can understand why. CP typically manifests because of brain damage caused from before birth up to five years of life. For those that have had children born prematurely you probably had a health professional sit down and talk brain damage with you. Tigger had a level 3 brain bleed that we know caused some damage. What's strange is that there is very few ways to tell the level of debility that the bleed will cause. The levels, 1 through 4, are just ways of assessing the damage to the tissue, but since the brain can be a puzzling thing, just because the tissue is damage doesn't mean that it will have an affect on the abilities of the individual. With Tigger, we know that bleed caused his gross motor skill development to be delayed. The usual pathways the brain uses to learn things like walking, talking, and potty training, were destroyed so the brain has to find a new, longer, path. So far Tigger has hit his developmental milestones - it just takes him longer.
Knowing about CP is similar. They don't know exactly what causes it and there are three different types of ways it can manifest but there is no set result of having it. Some may be severally disabled while others may have limited impairments. The thing that is so terrifying is that there is no cure and there is no way of knowing ahead of time what is going to be the extent of the difficulties. All that is know is that the child will be limited in some way. As someone who has faced the unknown I can say that it is terrifying.
If you know what to expect you can prepare. If you know what is going to happen you can act. But when you don't know what is going to happen or even what you could expect there is very little you can actually do. Doing something, action, is a way of relieving stress. Whenever there is a tragedy you'll always see people rushing to DO something about it. Natural disasters are easy things to act on. Gun violence, bombs, or acts of terror are a little more complex, but again you see people tightening security and trying to pass new measures designed to keep it from happening again. With an illness like diabetes or cancer their are established treatments and options, even if you don't know which one you'll need, you can start researching them. The sudden flurry of action is not always useful, but it makes people feel like they are doing something about the situation and trying to fix it.
It is hard to do anything when you don't know what needs to be done. If you sit still you appear to be apathetic to your situation. But if you rush about tying to DO something you may very well wear yourself down doing nothing productive. The mental and emotional toll are heavy as well as you try to wrap your brain around the unknowns. Perhaps the best way to describe it is that you body is ready for action - your fight-or-flight response is active, but there is nothing to fight or to flee from. Robison Wells has an anxiety disorder which manifests itself by turning his fight-or-flight response on and not shutting it off has described it feeling like he was being chased by wolves. That kind of emotional stress takes a toll.
But as I said, I feel confident that Smiles will do just fine. His parents are just great people, but people who have seen loss and yet know how to smile, laugh, and celebrate the joys they have. Smile's mother started a blog when he came out of the NICU called "A Laugh or Death Situation." Mama Crazy and her husband, Senior Guapo, decided to choose laughter over tears. When you hold Smiles you can't help but notice his smile. Regardless of what challenges he may face, he has already faced so many and yet still has such a wonderful smile. Yes, the unknown is truly terrifying, but I think that the film "Rise of the Guardians" (2012) got it right. When the nightmares are around you it's surprising how a little bit of fun can help dispel them.
I look forward to helping Smiles as he starts this new journey of his as well as experiencing the smiles he freely gives.
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