Mothers of Special Needs Children

bex Red cast Heidi Ferrer

Bex and Mommy Christmas '09

Feeling a little melancholy this week and trying to be patient with myself and think of what I can do right, what I can give.

A wave of tiredness came over me a few days ago and sometimes I have to actively remember not to beat myself up for having “feelings” about my son’s ongoing severe health condition, progressive infantile scoliosis.

edf mehta method castThe mourning and feelings will always be there, a psychic wound on our souls, but my son is so very happy most of the time and life carries on.

There is joy and there is laughter and there is green grass and there are California blue skies most days above our heads.

We’re lucky.

Bex asks me to crawl on the grass like a gorilla and I oblige and he climbs on my back and I don’t even care if I’ll pay for it when I am old.

Bex is ornery this morning and I’m pretty sure it’s because he knows there’s no school today or maybe he senses the rain is coming, a danger in the air, blustery chill winds and overcast skies.

bex iphone hospital

Bex on a Shriners hospital trip.

I worry. I worry he is ornery because he is mad at me or damaged in some way that I can’t fix, that he is or will be emotionally affected by these years of treatments, that I am failing him as a mother somehow. I carry guilt like I carry my son on my back like a baby gorilla.

Then again, maybe I’m wrong. Maybe I’m just tired. Maybe it’s just the rain coming.

I was reminded of this poem/essay by the incredible, amazing writer Erma Bombeck about mothering (parenting) a disabled or special needs child.

Mehta method edf cast

Mehta Method EDF cast

I don’t consider my son disabled at all, but he’s worn these body/torso casts for over two years of his young life, from age 19 months to age 3.5 and surely will beyond 4.

To be clear, I don’t think this poem is about or refers to me, but I KNOW it is about so many mothers I have become friends with as a result of this journey so far.

Thinking of them this morning, especially Connie, Antonio’s Mom. Antonio is getting spinal fusion surgery next week. Antonio is 12, he’s a big brother and he loves the band The Black Eyed Peas.

Please send Antonio your prayers, love and good vibes for safe surgery and healing, he’s a wonderful boy with an incredible, joyful spirit.

For Connie and my CAST Mom friends, and anyone else this speaks to today:

Mothers of Special Needs Children –


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 these 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…give her Gerard.  He’s used to profanity”

Finally he passes a name to an angel and smiles.  “Give her a blind child.”

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

“Exactly.” says God.  “Could I give a child with a handicap 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.”

“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 the 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 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, pen poised in midair.

God smiles.  “A mirror will suffice.”

Erma Bombeck

Erma Bombeck

~ Erma Bombeck published this column on May 11, 1980.

Love,

-Heidi

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2 Responses to Mothers of Special Needs Children

  1. Connie Viana says:

    I’ve been reading through your blog this morning and came across this one again. Ugh the tears. Thanks Heidi………
    You are amazing and will get through this time….
    Love you!
    Connie

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