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Monday, September 21, 2009

ode to special needs mothers

Last night was absolutely horrible as far as mommy moments go.  It was a difficult night for Pickleboy whom has Cerebral Palsy (mild) of course but still has it and the pain he was in just about broke my heart.

He had a very busy day as days go at our house.  We did some running around, going to Costco to take some things back and then Wallymart (Wal-mart) to do some food shopping.  LOTS and LOTS of walking and then we headed over to this woman's house to pick up a pair of roller skates.

Roller Skates for a kid who sometimes has trouble walking?

Well of course.  Why not?  Sure sometimes his legs give out and it takes him longer to learn things other kids take for granted like bike riding, climbing and jumping.  Why not?

So there he was all smiles on his skates, blading around the van and holding daddy's hand.  The world a whole new playground for him.  He skated and skated, grinning from ear to ear and showing everyone his new toy.

It was truly amazing and wonderful to watch his determination after each fall, get up and try again.  A great mommy moment.

Then night fell.

He woke up at one in the morning, crying hard. His legs were hurting.  I rubbed them and it allowed him some rest but he was anxious.  He tossed and turned while I held him, crying.

He refused a bath.

He refused medication to help ease pain in his legs.

Instead he wanted to walk.  And so there we were holding hands at one o'clock, darkness in our home because the light makes him sensitive and we walked the floor.

We went up and down the stairs several times and along the hardwood in the hall until finally my little guy was ready to go back to bed.  He laid down, snuggling himself between his dad and myself.  And wouldn't you know it...

Now I couldn't sleep!!!!

I had a hard time dealing with the feelings rolling around inside of me, the emotions that came through me for my son.  So grabbing my blackberry I punched in (MY CHILD HAS MILD CEREBRAL PALSY) not sure what I was hoping to find, some connection to other mothers who know what it's like to have a special needs child with needs nobody can see?  Maybe I wanted to be told he wasn't the only child like this because most children with Cerebral Palsy that we've met are severe and not (ordinary) so to speak when you look at them.

I searched through the first several links until I came across a chat room and that's where I suddenly found this... and then I started to cry.  Bawl more like it because let's face it I have no control over my emotions this early in the morning when my child has been weeping due to pain I cannot help him with.

PB immediatetly sat up and said: "Mama why are you crying?"

I wiped my tears and told him I was reading something and it made me sad but happy to read.  He asked me to read it to him and so I did.  This is what I read:

Ode to Special Moms

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

Finally, he passes a name to an angel and smiles, "Give her a handicapped

The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped 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 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 midair.

God smiles. "A mirror will suffice."

- Erma Bombeck, May, 1980 

It's true, every word.  There are good days and bad when you love a child with special needs especially if those needs are not visible to everyone else. I know I need to have faith in myself.  God gave my son (Trace) using his real name now because I am breaking my rule because I guess he figures I am worthy.  Most days I feel unworthy and as though I'm failing but then I see that smile, that look of not giving up when he tries to achieve something and I push forward.

I laid down beside my baby.  We held hands and finally we both fell alseep.  Tomorrow is another day, another adventure and another day filled with glorious challenges to face.  And we will do it together but never alone.


A.Marie on September 22, 2009 at 3:32 AM said...

Oh my goodness...such a beautifully written post! I am also a mother of a child who has Fetal Alcohol Syndrome. She was first our foster daughter, then we were able to adopt her. Life is never dull with Special Needs children, but it can be filled with sorrow and heartache, at times. But, then God will give us Mothers renewed strength and courage, and we face yet another day! :)

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