Posted by: debstake | July 24, 2008

An Old Post from my website


The following post is one that is three years old but still very much how I feel (most of the time that is). I hope it gives hope to those just starting this walk. If you would like to see the post in its original format click here.

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The background of this page is called peace and hope. Two things I wish (like most parents) for my children. There have been days when hope is all I have had to sustain me and there have been other days when hope is all I have needed. My son has without any doubt in my mind taught me that hope is by far the most powerful of all. Hope for him to get well, hope for the future of him and all children; hope that what we as parents (of ANY children regardless of any issues) have in order to make things just. To do the right thing by this planets most precious assets.

Five years ago my son JR was diagnosed with what I perceived then as a “sentence” much like that of a  convicted criminal. A sentence of pain, both physical and emotional, a sentence of exclusion, a sentence of no hope. Over the course of these past three years I have learned that autism isn’t a sentence; but more like a revelation. A revelation into the human spirit, into the fortitude it takes to over come adversity, negativism, and despair. A revelation of hope.

We as a family here in PA and as a community on the internet have learned this lesson I believe collectively  and individually. It’s a never ending process, there is always new hope for new things. My hope in the beginning was for JR to talk someday. Well after eight years of speech therapy and little results to show for it; we have opted on an AT device (Dynavox 5) that will speak for him. I moved the emphasis off of talking and onto effective communication and he is doing very well with his AT after only 5 months.

For those whose children have been newly diagnosed with any kind of challenge my suggestion is cling to that element of hope. For it is hope that drives a person on their quest for knowledge, treatment and change. It is hope that we swing as a sword to impale adversity and despair.

I wake up every morning saying a little prayer of thanks for giving me my life, the people in it and most importantly the ability to grasp at hope for a better day, a better way and happiness. I have finally found my personal peace with the trials and tribulations that autism has presented to me. I marvel at every new milestone that BOTH my children make. I take nothing for granted and that of course is the primary lesson when, as a parent you have a child with a challenge. I can honestly say I thank God for all of his gifts but in particular the gift of HOPE. For when you take away the motivations for why we do what we do, all anyone really has is hope! And so with my thoughts put to this page I would like to share the following:

 

PATRON SAINT

(also known as The Chosen Mothers)

by

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, 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 handicapped child.” The angel is curious. “Why this one, God?  She’ 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 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 `Mommy’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset 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 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 mid-air. God smiles, “A mirror will suffice.”

 

 

 

I hold this particular passage near to my heart for I truly believe that God does select us to do his work. To right the injustices of an unjust world, to educate the masses, to work for change. For that I am grateful and undeserving of such an honor. But I will do the best I can by my children and all the children of this world.  I wouldn’t be the woman I am today if not for the experiences I have had.

I know it’s difficult some days to look at the glass as being half full, however I know that if I don’t keep a positive outlook the ones who pay the heftiest price will be the  children. Mine as well as yours. 

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