Today's Funeral

smitty_p

smitty_p

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As mentioned in another thread, a vocalist friend of mine, with whom I was in a band for awhile, lost his daughter last week, at the age of 17. She had Aicardi-Goutieres Syndrome (AGS). The visitation and funeral were today.

Her name was Abby Weinberg.

He used to bring her to our practices now and then with his wife Stephanie. She was such a joy. Though she couldn't talk, she could smile...and smile big!

I always felt like it was a good practice session or concert when we made Abby smile!

For those who don't know about AGS, here's a link to the AGS Americas website. At this link, Abby is shown with her mother, Stephanie Weinberg, who is also the President of AGS Americas.

I spoke a bit with Stephanie today, and talked for quite awhile with Abby's dad, Dave.

Take some time to peruse the website and learn a little about this rare disease.


www.agsamericas.org

About the AGSAA — AGS Advocacy Association

About the AGSAA.
www.agsamericas.org www.agsamericas.org
 
Smitty sorry for your loss as well as your friends-- to lose a child is the worst I can imagine--agreed Chas far surpassing a friend--even a parent-- as we are "programmed" to be "prepared" for their loss even if its far too early sometimes-but a child-- especially a teenager or younger - is a far deeper blow than i can imagine and hope I never do.

To any who have experienced this my deepest respect, and condolences.
 
eSGEe said:
Smitty sorry for your loss as well as your friends-- to lose a child is the worst I can imagine--agreed Chas far surpassing a friend--even a parent-- as we are "programmed" to be "prepared" for their loss even if its far too early sometimes-but a child-- especially a teenager or younger - is a far deeper blow than i can imagine and hope I never do.

To any who have experienced this my deepest respect, and condolences.
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Do you wanna know something? Those of us who have severely disabled kids want only one thing.

As the father of a disabled child, myself, I spoke at length with Dave....Abby’s father. It fascinates me to see how similar we all are.

We don’t sympathy. We know our kid’s aren’t “normal”. And, we don’t want anyone to pretend they are.

But we all seem to energetically and aggressively defend our children’s dignity.

By the way...does anyone know what it means to come home to a human being who loves unconditionally?

I do.

My non-conversant, severely autistic son just wants me to build Legos with him when I come home.

He is 22.

I am blessed beyond measure!
 
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smitty_p said:
Do you wanna know something? Those of us who have severely disabled kids want only one thing.

As the father of a disabled child, myself, I spoke at length with Dave....Abby’s father. It fascinates me to see how similar we all are.

We don’t sympathy. We know our kid’s aren’t “normal”. And, we don’t want anyone to pretend they are.

But we all seem to energetically and aggressively defend our children’s dignity.

By the way...does anyone know what it means to come home to a human being who loves unconditionally?

I do.

My non-conversant, severely autistic son just wants me to build Legos with him when I come home.

He is 22.

I am blessed beyond measure!
Click to expand...

Brother Smitty, I cannot even fathom how parents with 100% healthy kids do it, let alone ones with special needs children. As you and I have touched upon things such as this, I think of my high school friend who has 2 autistic kids. Her son is 19 and daughter 21. Her daughter is much like your son. Non-conversant. How she does it as a single/divorced mom, is beyond me. SO glad your kids have you and your wonderful wife as parents. As always, you are a great friend and even greater dad.

May peace and healing be with the family and friends of Abby. The world was blessed with an angel.
 
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