Ok, this isn't going to make any sense.
You have been warned.
I am troubled. I am full of angst and anxiety. My intimate relationship seems to be in a state of...flux. So many things are up in the air at the moment. It's maddening. I've invested 4 years, and to be honest with you...I have no idea what the next moment will bring. I feel that at any moment the rug will be pulled from under me. I wonder if the man that I love is really who I think he is. I am suspicious that this is all an illusion. Perhaps a lucid dream. Will I wake up and find myself back in Baltimore with no hope for a future of peace and joy.
I love my relationship. It just seems very fragile to me at times. This makes me uneasy. It makes me recoil. It makes me rebel.
Next, today I realized that my little boy is turning 9 years old this September. WOW. Where has the time gone, and more impotantly, what have I done with it. I feel like the past 10 years of my own life have been spent chasing...something. I'm not sure what exactly. He has triumphed repeatedly over his disability, and I have watched in awe as he has overcome hurdle after hurdle. I hope to one day be as strong as he is.
I'm feeling a little trapped these days. Like a caged animal. Ugh, how cliche of me. I couldn't think of a fresher, more appropriate phrase at the moment. My apologies. I can't help but yearn for and daydream of the days when life was simpler. Well, my life was NEVER "simple", but it had varying degrees of simpler than THIS. And by simpler than THIS, I mean, simpler than now. Logistically, my life is a clusterfuck. I am in the process of trying to figure out how to love and enjoy my child, cultivate my own identity, work, make music, and maintain a delicate intimate relationship. It is difficult for my significant other and I to do things together, and it becomes moreso as time goes on. My mother has been fighting cancer for many years, and she is in no shape to play the role of "Grandma Babysitter"....I find it exceptionally difficult to admit that I need a break. From all of this. Everything. I just want to go away, and live in a perfect little world with no responsibilities for like, 2 days. Thats all. 2 days. I want someone to take care of me.
I want 2 full days where I don't have to worry about someones feelings. No social workers, no supply company orders, no abusive ex husband, no sharing the remote, no friends to answer to, no family guilt, no terror that Munchkin's breathing pattern could be a precursor to a brand new fresh case of pneumonia. I want to sing as loud and for as long as I want. I want to work in my studio. I want my own space. No cleaning. I want to play guitar. I don't want to be sorry for something. I want to be...not obligated for just. 2. days.
I'll let you know...
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Friday, July 17, 2009
Wednesday, April 15, 2009
Miracles...
Hey guys...So I'm sure that those of you who are close to me realize that I am an EXTREMELY private person. I listen well, but do not talk so much about my life and circumstances very often. I have difficulty letting people in....Anyway, this day has been so incredible that I have to share.
So some of you are aware that I have a little angel boy with profoundly special needs. He has been fighting a very rare illness since birth, and going through this journey with him has been my greatest joy, and my greatest heartache. My soul cries for him daily, and I have more than once asked God why this precious angel was given such a tough road.
When he was about four months old, the doctors pretty much looked at me and told me to "prepare myself". Other specialists said that he "may" make it to his first birthday...My response was a clear and resounding, "Thank you, but I do not accept that."
He suffered from atrophy to the frontal lobe of his brain, and basically had fluid filling all of the space where his brain should be. This odd brain abnormality contributed to him having well over 180 (visible) seizures everyday, while his brain activity, when measured with an EEG, showed one constant seizure on the right side of his brain. This often resulted in him having to be put into a medication induced coma, complete with respirator/ventilator...sometimes for weeks at a time. It was terrifying. These problems lead to others such as lung problems as a result of him being unable to swallow properly. Instead of liquid or food going from his mouth into his stomach, everything pretty much went straight into his lungs, which caused many life theatening pneumonias. The only option was for him to be fed through a stomach tube. Not long after that, he had to have a surgery that would tie his stomach around his esophagus so that no liquid could creep out of his stomach and back into his lungs. Sorry for the long back story, but I think it's important to share. Plus, this is the abridged version.
My son can not walk, he is on 6 different seizure medications, 2 lung medications, and he does not speak...He does however communicate. We have our very own special language. Just me and him.
So today, I took him back to the specialists at Kennedy Krieger in Baltimore. It seems as though he lived at that place for a long time. This is the first time that we've been back in 2 years. I was tired of him being poked and prodded, wondered over, and used as the subject of study. His case is one in a million or more. So today we went back. I admit, I was worried about some test results.
He has been very healthy for the past year or so, and I have been using some slightly unconventional therapy techniques.
First up was the Orthopedics doc. She's a sweetheart. I was worried because Angel Baby has really severe scoliosis, and with children like him, it only gets worse. The last time that I saw her she warned me to be aware that our next meeting may need to be centered around him needing surgery to correct the deep curvature in his back. They basically insert a rod into/around the spine to straighten it when the curvature is too deep because a deep curve can cause all sorts of problems...The spine may begin putting pressure on the heart or crushing a lung. As I said, children with his type of disorder only tend to get worse as they grow.
So we take the Xray. I'm praying and praying, and trying to stay at peace as we wait for the doctor to inform us of what she sees....
"Jeanette!" she says..."He looks great! His spine has IMPROVED!" This little dude went from having a 40 degree curvature to a 30 curvature in two years..that is sooooo backwards, and truly a miracle.
Next, his genetics/neurology doc comes in and says, "Look Jeanette....(blah blah blah...doctor talk)" but the long and short was that he wanted to reduce his medication due to the fact that his little brain has COMPLETELY regenerated itself, and he has gone from 180 seizures a day to.......2. Yes...two seizures per day. I'll take it.
I wanted to share this story with you all because, look, I totally get depressed sometimes, and I totally lose sight of why God put me here....But listen, if this kid can wake up everyday with a smile on his face after all that he's been through...then I have nothing to complain about. Granted, he has never known what it's like to walk on his legs...but maybe that should make you a little more thankful for yours. If HE can smile and laugh and love as much as he does...then I would be a fool not to realize that God sent me my very own angel to remind me everyday, why it's all ok. Why life is so....ok. Be happy. Love yourself. I love you:-)
By the way...He made it past his first birthday. He is eight years old:-)
So some of you are aware that I have a little angel boy with profoundly special needs. He has been fighting a very rare illness since birth, and going through this journey with him has been my greatest joy, and my greatest heartache. My soul cries for him daily, and I have more than once asked God why this precious angel was given such a tough road.
When he was about four months old, the doctors pretty much looked at me and told me to "prepare myself". Other specialists said that he "may" make it to his first birthday...My response was a clear and resounding, "Thank you, but I do not accept that."
He suffered from atrophy to the frontal lobe of his brain, and basically had fluid filling all of the space where his brain should be. This odd brain abnormality contributed to him having well over 180 (visible) seizures everyday, while his brain activity, when measured with an EEG, showed one constant seizure on the right side of his brain. This often resulted in him having to be put into a medication induced coma, complete with respirator/ventilator...sometimes for weeks at a time. It was terrifying. These problems lead to others such as lung problems as a result of him being unable to swallow properly. Instead of liquid or food going from his mouth into his stomach, everything pretty much went straight into his lungs, which caused many life theatening pneumonias. The only option was for him to be fed through a stomach tube. Not long after that, he had to have a surgery that would tie his stomach around his esophagus so that no liquid could creep out of his stomach and back into his lungs. Sorry for the long back story, but I think it's important to share. Plus, this is the abridged version.
My son can not walk, he is on 6 different seizure medications, 2 lung medications, and he does not speak...He does however communicate. We have our very own special language. Just me and him.
So today, I took him back to the specialists at Kennedy Krieger in Baltimore. It seems as though he lived at that place for a long time. This is the first time that we've been back in 2 years. I was tired of him being poked and prodded, wondered over, and used as the subject of study. His case is one in a million or more. So today we went back. I admit, I was worried about some test results.
He has been very healthy for the past year or so, and I have been using some slightly unconventional therapy techniques.
First up was the Orthopedics doc. She's a sweetheart. I was worried because Angel Baby has really severe scoliosis, and with children like him, it only gets worse. The last time that I saw her she warned me to be aware that our next meeting may need to be centered around him needing surgery to correct the deep curvature in his back. They basically insert a rod into/around the spine to straighten it when the curvature is too deep because a deep curve can cause all sorts of problems...The spine may begin putting pressure on the heart or crushing a lung. As I said, children with his type of disorder only tend to get worse as they grow.
So we take the Xray. I'm praying and praying, and trying to stay at peace as we wait for the doctor to inform us of what she sees....
"Jeanette!" she says..."He looks great! His spine has IMPROVED!" This little dude went from having a 40 degree curvature to a 30 curvature in two years..that is sooooo backwards, and truly a miracle.
Next, his genetics/neurology doc comes in and says, "Look Jeanette....(blah blah blah...doctor talk)" but the long and short was that he wanted to reduce his medication due to the fact that his little brain has COMPLETELY regenerated itself, and he has gone from 180 seizures a day to.......2. Yes...two seizures per day. I'll take it.
I wanted to share this story with you all because, look, I totally get depressed sometimes, and I totally lose sight of why God put me here....But listen, if this kid can wake up everyday with a smile on his face after all that he's been through...then I have nothing to complain about. Granted, he has never known what it's like to walk on his legs...but maybe that should make you a little more thankful for yours. If HE can smile and laugh and love as much as he does...then I would be a fool not to realize that God sent me my very own angel to remind me everyday, why it's all ok. Why life is so....ok. Be happy. Love yourself. I love you:-)
By the way...He made it past his first birthday. He is eight years old:-)
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