You know that things are tough when your prayers veer into the delusional spectrum.
When you have nowhere else to look but up, and if your cry to God sounds like this,
you know you're in for a fight:
"Dear God, I promise to give up coffee and diet coke FOREVER as long as you give my son an orthopedic problem or a metabolic disorder." Crazy! I know, but at times this just makes sense.
You know that you have it rough when somehow Cerebral Palsy, Down Syndrome, deletions, duplications, translocations, arthogyposis, g-tubes, trachs, niessen wraps, micrognatia, hypotonia, or hypertonia are just part of your daily vocabulary, suddenly it's not "scary" anymore and it becomes just as familiar as someone else saying: Pass the salt.
It's tough when you pray that your excess or lack of amniotic fluid or this club foot or cleft palate, or polidactilia, or what have you is just an isolated issue, an not a symptom of a larger picture.
You know is rough when even the most well intended comments from family or friends just clash, sound ignorant, unnecessary, when they are themselves at a loss for words and as much as you want to cut them some slack, you just feel stabbed in the stomach every time that someone wants to give you some "advice".
You know how hard this is when you just can't possibly go on, but suddenly you get a letter, or e-mail from someone saying: I have no idea what you're going through, I can't even imagine, but I'm here for you, I'm on my knees praying to the God of Gods for you. Then you open the door and there's food or flowers or a card in your front porch from someone that you barely know, and you're humbled, grateful with tears in your eyes and your face in the ground and all you have left to do is praise God.
When you have nowhere else to look but up, and if your cry to God sounds like this,
you know you're in for a fight:
"Dear God, I promise to give up coffee and diet coke FOREVER as long as you give my son an orthopedic problem or a metabolic disorder." Crazy! I know, but at times this just makes sense.
You know that you have it rough when somehow Cerebral Palsy, Down Syndrome, deletions, duplications, translocations, arthogyposis, g-tubes, trachs, niessen wraps, micrognatia, hypotonia, or hypertonia are just part of your daily vocabulary, suddenly it's not "scary" anymore and it becomes just as familiar as someone else saying: Pass the salt.
It's tough when you pray that your excess or lack of amniotic fluid or this club foot or cleft palate, or polidactilia, or what have you is just an isolated issue, an not a symptom of a larger picture.
You know is rough when even the most well intended comments from family or friends just clash, sound ignorant, unnecessary, when they are themselves at a loss for words and as much as you want to cut them some slack, you just feel stabbed in the stomach every time that someone wants to give you some "advice".
You know how hard this is when you just can't possibly go on, but suddenly you get a letter, or e-mail from someone saying: I have no idea what you're going through, I can't even imagine, but I'm here for you, I'm on my knees praying to the God of Gods for you. Then you open the door and there's food or flowers or a card in your front porch from someone that you barely know, and you're humbled, grateful with tears in your eyes and your face in the ground and all you have left to do is praise God.
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