May 13, 2023 |by Tabitha Orth, IAES President 

Honoring Mother’s in the Autoimmune Encephalitis Community:

Happy Mother’s Day from International Autoimmune Encephalitis Society!

—-

How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart.  Our son Matthew is now 32 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partners in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.

On this weekend, I was to give a presentation. A break was scheduled right afterward. So, people got up to mingle after my presentation. The room was packed with a few hundred people milling about. As I stepped off the stage, I noticed a woman weaving her way through the crowd toward me.  She wore a brown hat and was about a foot shorter than my 5’4”, I vividly recall.  She came up to me and handed me a piece of paper, smiled, nodded her head to gesture that she was pleased and that she had completed her task, and then wordlessly turned around and wove her way back through the crowd. I remember following that hat with my eyes wondering at her silent retreat.

Then I looked down at the paper she had given me and saw its age. Three of the edges were dusty brown with the remainder a greyish white that told me it had been kept in a book smaller than the size of the page for many years. The paper itself was from an old-fashioned mimeograph machine from the 1960’s. The texture had that slick feel I recalled from my days in elementary school. This dated the paper back more than thirty years. The crisp edges had worn away years ago as they were now softened, curled and brittle enough with cracked tears in the mimeograph paper all a witness to its age.  The print was faded with wavy lined sentences from the imprecise printing of the drum of the machine.

This is what it said.

Choosing “Special” Mothers 

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 660,000 women will become mothers of a child with a disability.  Did you ever wonder how mothers of children with disabilities 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: Cecilia.”

“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 disabled Child.”  The angel is curious.  “Why this one, God?  She’s so happy.”

“Exactly,” smiles God.  “Could I give a disabled child to 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 wear off, she’ll handle it.”

“I watched her today.  She has that feeling of self and independence that is so rare and so necessary in a mother.  You see, the child I’m going to give her has his own world.  She has to make it 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 separate herself from the child occasionally, she’ll never survive.  Yes, here is a woman whom I will bless with a child less than 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 what a sunset makes her feel like to her 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 these.  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 by my side.”

“And what about her Paton Saint?” asks the angel, his pen poised in midair.

God smiles.  “A mirror will suffice.”

By: Erma Bombeck

Your generous Donations allow IAES to continue our important work and save lives! 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

May 9, 2021 |by Tabitha Orth, IAES President 

Honoring Mother’s in the Autoimmune Encephalitis Community:

Happy Mother’s Day from International Autoimmune Encephalitis Society!

—-

How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart.  Our son Matthew is now 30 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partners in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.

On this weekend, I was to give a presentation. A break was scheduled right afterward. So, people got up to mingle after my presentation. The room was packed with a few hundred people milling about. As I stepped off the stage, I noticed a woman weaving her way through the crowd toward me.  She wore a brown hat and was about a foot shorter than my 5’4”, I vividly recall.  She came up to me and handed me a piece of paper, smiled, nodded her head to gesture that she was pleased and that she had completed her task, and then wordlessly turned around and wove her way back through the crowd. I remember following that hat with my eyes wondering at her silent retreat.

Then I looked down at the paper she had given me and saw its age. Three of the edges were dusty brown with the remainder a greyish white that told me it had been kept in a book smaller than the size of the page for many years. The paper itself was from an old-fashioned mimeograph machine from the 1960’s. The texture had that slick feel I recalled from my days in elementary school. This dated the paper back more than thirty years. The crisp edges had worn away years ago as they were now softened, curled and brittle enough with cracked tears in the mimeograph paper all a witness to its age.  The print was faded with wavy lined sentences from the imprecise printing of the drum of the machine.

This is what it said.

Choosing “Special” Mothers 

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 660,000 women will become mothers of a child with a disability.  Did you ever wonder how mothers of children with disabilities 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: Cecilia.”

“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 disabled Child.”  The angel is curious.  “Why this one, God?  She’s so happy.”

“Exactly,” smiles God.  “Could I give a disabled child to 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 wear off, she’ll handle it.”

“I watched her today.  She has that feeling of self and independence that is so rare and so necessary in a mother.  You see, the child I’m going to give her has his own world.  She has to make it 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 separate herself from the child occasionally, she’ll never survive.  Yes, here is a woman whom I will bless with a child less than 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 what a sunset makes her feel like to her 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 these.  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 by my side.”

“And what about her Paton Saint?” asks the angel, his pen poised in midair.

God smiles.  “A mirror will suffice.”

By: Erma Bombeck

Your generous Donations allow IAES to continue our important work and save lives! 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.