i want to write about something that has left me with very strong feelings. i will finish writing about the awesome trip with my Master tomorrow. Right now, i just need to vent.
i’ve seen the news reports on the death of John Travolta’s son. It breaks my heart. i know, first hand, the fear that grips your life everyday when you have a child that suffers from grand mal seizures. i know what it feels like to see your child fall in a heap, hitting various body parts on furniture and the floor as they thrash around. i know what it’s like to take your child to ER in your car and in the back of an ambulance because of injuries suffered during a seizure or because the seizures won’t stop.
i know what it feels like to give your child one medication after another in the hopes that this is the one that will work. i know what it’s like to plan your activities around “is this a 10 seizure day or a 100 seizure day?”. i know what it’s like to have people stare as your child hangs on you while she has a seizure in Wal-Mart. i know what it’s like to watch medicine after medicine, surgery after surgery, even brain surgery, fail to stop the misfiring of your child’s brain. i know what it’s like to have a doctor look you in the face and say, “I’m sorry, this will most likely be how your child dies”. i know what it feels like to go into your child’s room praying this isn’t the day you will find her gone instead of just sleeping longer than usual.
i also know how cruel and callous people can be online. i have seen people think it’s okay to call people bad parents and be mean and nasty simply because they think anything goes as long as it’s online. i know the hurt words can cause. Maybe before people start spewing their hatred and misery towards someone else, they should take a good look at themselves and wonder what exactly they are doing to make this a better planet. Maybe, those small-minded people who have nothing better to do than to criticize how other people parent, should ask themselves, “what would i want to hear in my time of sorrow and need” instead of “what can i say to be nasty”.
Because i refuse to end this in a bad way and because my child deserves better: i also know the kindness of strangers and their offers of help even when there is nothing they can do. i have felt the hugs of nurses and doctors when their medicines can’t help and all they can give me is their compassion. Most importantly, I KNOW the love of my precious Taylor and the utter joy that she takes in every moment of her life.
i’ve seen the news reports on the death of John Travolta’s son. It breaks my heart. i know, first hand, the fear that grips your life everyday when you have a child that suffers from grand mal seizures. i know what it feels like to see your child fall in a heap, hitting various body parts on furniture and the floor as they thrash around. i know what it’s like to take your child to ER in your car and in the back of an ambulance because of injuries suffered during a seizure or because the seizures won’t stop.
i know what it feels like to give your child one medication after another in the hopes that this is the one that will work. i know what it’s like to plan your activities around “is this a 10 seizure day or a 100 seizure day?”. i know what it’s like to have people stare as your child hangs on you while she has a seizure in Wal-Mart. i know what it’s like to watch medicine after medicine, surgery after surgery, even brain surgery, fail to stop the misfiring of your child’s brain. i know what it’s like to have a doctor look you in the face and say, “I’m sorry, this will most likely be how your child dies”. i know what it feels like to go into your child’s room praying this isn’t the day you will find her gone instead of just sleeping longer than usual.
i also know how cruel and callous people can be online. i have seen people think it’s okay to call people bad parents and be mean and nasty simply because they think anything goes as long as it’s online. i know the hurt words can cause. Maybe before people start spewing their hatred and misery towards someone else, they should take a good look at themselves and wonder what exactly they are doing to make this a better planet. Maybe, those small-minded people who have nothing better to do than to criticize how other people parent, should ask themselves, “what would i want to hear in my time of sorrow and need” instead of “what can i say to be nasty”.
Because i refuse to end this in a bad way and because my child deserves better: i also know the kindness of strangers and their offers of help even when there is nothing they can do. i have felt the hugs of nurses and doctors when their medicines can’t help and all they can give me is their compassion. Most importantly, I KNOW the love of my precious Taylor and the utter joy that she takes in every moment of her life.
3 comments:
Sister, i do not share in the sorrows that you have faced/felt but i know that i would gladly be one of those strangers that would try to help anytime i could; whether it be in person or online. And have been one of those strangers. As it turns out, on a rare occasion it has developed into a friendship or two.
Most of those people that would try to help will just choose to keep their thoughts/words to themselves when it comes to online. For the most part, its not worth our time to argue online w/people who have nothing better else to do than slam others. But then again, maybe we should speak up...
It's to bad we won't hear about your first visit to a casino today, but i understand your need to vent about the unkind in this world.
i left the active online life for many reasons, one of them being the ignorance of others and my inability to change it.
you have done well to vent in this forum of safety. There is nothing you can do either except in frustration try to counter their points with your truth and the truth that Taylor has taught you.
My mother once had a saying ignore them and perhaps they will go away.
hugs,
kathleen {SG}
So well written and I know your heart and this expresses so well.
I have not endured the "i know" part of this for a very long time, but there are a few part of this I KNOW!
I understand your feelings and for you to be able to write them, is so much more positive than other things you could do. It is the right thing to do.
your ability to see these things, get angry or frustrated, then vent by writing them out, and dealing with them, is perfect.
you have come a long way my little girl. Well done.
Master
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