Griefhaven has been a great source for conversing with other grieving families for me .
https://www.griefhaven.org
Saturday, February 14, 2009
Thursday, February 12, 2009
How am I ?
Speaking for all of us
The world hasn't stopped turning because we are hurting...
Life goes on all around us as ours feels as though it has come to a halt.
Sometimes people don't realize that asking how you're doing just opens the floodgates.
I want to scream and say I'm not alright and I won't be alright, but I know that will make me sound like a lunatic. But , it's how I feel most days. The days pass slowly and the nights slower , when you've lost a child. You go to sleep hoping it's all a nightmare and wake up wishing it was , only to go through the same day over and over. The constant thoughts of what should have been and what could have been are consuming. Always wanting to snuggle him , watch him sleeping, hear him laughing,watch him enjoy a cookie and thinking of what he would sound like if he could talk...wishing things were different .
To be able to change things for my daughter, his mommy. To have words that would make things better like mom's are supposed to be able to do. I don't have the right words , there are no right words. I don't have the answers, somebody , please , tell me what the answers are!
Wishing the doctor would have given more thought to Elijah than to whatever could have been on his mind that day.
Rage, pain and grief... nothing can change it now.
I MISS ELIJAH CALL
The world hasn't stopped turning because we are hurting...
Life goes on all around us as ours feels as though it has come to a halt.
Sometimes people don't realize that asking how you're doing just opens the floodgates.
I want to scream and say I'm not alright and I won't be alright, but I know that will make me sound like a lunatic. But , it's how I feel most days. The days pass slowly and the nights slower , when you've lost a child. You go to sleep hoping it's all a nightmare and wake up wishing it was , only to go through the same day over and over. The constant thoughts of what should have been and what could have been are consuming. Always wanting to snuggle him , watch him sleeping, hear him laughing,watch him enjoy a cookie and thinking of what he would sound like if he could talk...wishing things were different .
To be able to change things for my daughter, his mommy. To have words that would make things better like mom's are supposed to be able to do. I don't have the right words , there are no right words. I don't have the answers, somebody , please , tell me what the answers are!
Wishing the doctor would have given more thought to Elijah than to whatever could have been on his mind that day.
Rage, pain and grief... nothing can change it now.
I MISS ELIJAH CALL
Tuesday, February 10, 2009
Elijah Call and Uncle Jacob
One of the best pictures as said by all...
Today has been so hard , Angel, we miss you more than sunshine.
We will not give up searching for your answers.
You are permanently engraved in our hearts, eyes and minds...
Love you more each moment,
FOREVER YOURS
GRAMMIE
Monday, February 9, 2009
Sunday, February 1, 2009
40 year old man diagnosed with DiGeorge...
More and more, I am finding information that justifies my thoughts that there NEEDS to be more education in the medical profession about 22q deletions , DiGeorge, and all other genetic disorders. Education IS key. If more doctors understood, more can be done.
Please help me educate them...
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2222674
Please help me educate them...
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2222674
Saturday, January 31, 2009
More useful information
Thanks to Lindsay for providing this link ....
It has very useful information for families of children with genetic deletions.
www.vcfsef.org/articles/en/pdf/Factsheet
It has very useful information for families of children with genetic deletions.
www.vcfsef.org/articles/en/pdf/Factsheet
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