I called AGAIN yesterday and FINALLY got an appt. for Sammy for Mass General Hospital for a total feeding eval and ear nose and throat eval! I am psyched ! They got us in for next Tuesday, the 4th! WOW! It is really hard to get an appt. there and to get one so soon, I feel like God is watching over us! :) I am really excited about this appt. We can finally be ok with whatever the outcome for the g tube is after this....If they agree, then I think I can accept it. Poor guy doesn't want to drink a bottle for the woman who watches him 2 days a week after his school, which is not good, because yesterday he was having what looked like his myoclonic seizures, I figured probably because he was getting dehydrated. Some days he does well with drinking the bottle and other days like at the bedtime one he chokes like a madman. I just want answers for what is best for him in the end....I will update later on that...
We are also going to visit what sounds like a great K-1-2 classroom for Sammy next week. I have heard awesome things about it...they also include them at points during the day as well in the regular ed rooms, which is nice. We'll see how it is...
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God Chooses A Mom for A Disabled Childby Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
About Me
- ellen :)
- MA
- I'm a wife of 8 years, a mom of 2 gorgeous boys, one who has CP, and a lover of turtles! :)
5 comments:
Audriannas partial seizures increase when she doesnt eat or drink much.
I am so glad you got that appointment, and I totally know how you feel. You need clear cut evidence for the need, and then you can handle it. I can't believe you got an appointment that fast either. WOW! I am curious to see how the visit to the K-12 thing goes. Keep us post.
I am so glad too that ya'll are talking about the food and drink and seizure thing. Emma's have been up lately, and you know I wondered about the eating drinking thing myself. I am thinking she needs more water lately, especially with her allergies and the increase in temperatures lately. Emma's are up roght now, and I have been so frustrated. It's like you all are confirming what I was thinking. Thanks I could hug you Ellen--and you too, Jenny.
Hey, Jenny, or Ellen, if I could get Jenny's e-mail, I could invite her to Emma's blog. I am going to check out Audrianna's blog right now.
Great news on getting the appointment so quickly! I hope you get the answers you need, finally! Keep us posted on everything!
thanks for the well wishes ladies. I will definitely update when we go!
Amy, I am glad we could help! The weird thing is that we haven't had any in years, and Sammy was giggling after each one..Better that than crying I guess!
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