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Karen Lynn Vidra, The Texas Tornado

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Help, Me, Mom'.: Special Needs Parenting 101
By Karen Lynn Vidra, The Texas Tornado
Friday, January 04, 2008

Rated "PG" by the Author.

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A mother deals with her son's serious medical condition on a daily basis.


"Help me, mom".

No matter how often I hear those words issuing from my son's (often blue) lips, I'll never get used to it. Hearing those words causes fear to knife through my chest.

My son, Aber, is thirteen now; that he's lived this long is nothing short of a miracle. When my son was diagnosed at the age of one with cystic fibrosis, he wasn't expected to live beyond the age of four.

Doctors were telling me that my son was going to die.

However, the road has been long, hard, rocky: Aber is in and out of the hospital on a regular basis (he's one of the pediatric ward's "frequent flyers"); all the doctors and nurses at Nashville Children's know him by his first name; he is often remarked as being a favorite of theirs.

It may make him feel good, but it puts me ill at ease. It only reminds me just how sick my son really is. At the age of thirteen, he looks more like eight or nine: Aber's very short in stature, weighs only 70 pounds soaking wet, and is now tethered to an oxygen tank that he takes with him wherever he goes: the disease he has has ravaged his lungs; it makes it hard for him to breathe.

In addition, he has a poor appetite: all the pills he takes has wrecked his appetite. Every day, three times a day, for an hour each time, he must have therapy to loosen secretions from his lungs; he can't do it himself. We do it to keep him alive as long as possible.

Sometimes no matter what we do prevents Aber from getting sick. He often ends up in the hospital. Breathing trouble. Again. There's nothing more terrifying than to be awakened in the middle of the night to the sound of your child struggling, gasping to get a good breath in; sometimes I've found  him in his bed, unconscious, blue in the face.

That's the worst. I think he's already died; but more often than not it's because the damned fluid has blocked his airways again, and he must be suctioned, pounded on again.

There's nothing more scary than to have to call 911, asking them to send an ambulance over, because your kid is sick again.

However, finding your son unconscious or blue in the face is worse. Ten times worse.

I try to put on a brave affront when dealing with my son (he knows he's dying; he can't hide that fact); yet when I am not there with him, I constantly worry because I wonder if this is the day his lungs finally give out, if this is the day he goes home to the Lord. He is terminally ill; he is so weak, so wasted, and it breaks my heart to see him, hear him suffering with this damned CF that he has.

At times I've gotten so stressed out over what he's going through that all I can do is cry. Believe me, I've cried a million tears, no, maybe a billion, maybe even a trillion.

Sometimes Aber's coughed up blood: bright, red, liquid blood, and that's always terrifying. When that happens, he has to go to the hospital, be treated right away. He coughs so hard he busts capillaries/veins in his lungs, and this causes them to bleed. His lungs are shot, and yet somehow he soldiers on--with life-giving oxygen tubing, tank in tow.

Having a child like Aber has aged me. I am only in my mid forties, yet I look sixty. Grey, stringy hair, gaunt, sallow complexion, wasting away just like my son--but only because I don't have the appetite anymore. Too much stress, too much worrying about Aber and what the new day is going to bring, in relation to his health.

If he is going to live another day or go home to meet his Maker.

 
 


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Reviewed by Debbie Bailey 6/18/2008
Tears filled my eyes as I read this. I can't imagine what it must be like to go through what you wrote about. I missed out on being a parent because a serious illness kept me from getting pregnant. My husband and I thought about adopting but it would be hard for me now with my daily struggles. When I read a story like this, I feel that I missed out on so much because the love the mother has for her child is so powerful. There are painful struggles at times but it's all worth it, isn't it?
Thank you for sharing. God bless you. You have a gift.
Reviewed by Michal Maoz 4/22/2008
Cystic Fibrosis is a horrible illness. My son had a good friend with CF and I could see how that beautiful boy struggled every day with so many things. I can only imagine how hard it is for the parents and siblings. Not everyone is aware of what CF is and what it means to those who live with it. Thank you for writing about this and sharing this touching story with us. I think that raising awareness to it is vey important!

Michal
Reviewed by Michelle Kidwell Power In The Pen 1/6/2008
Cystic fibrosis is a horrible disease, I read a book in Highschool called Robin's Book a girl who lived with and died with CF, I have read it several times sense as well it was truly one of the most powerful books I have read and as you know I have read many
God Bless
Michelle~
Reviewed by Joyce Devenish 1/4/2008
Cystic fibrosis is a very bad problem and as yet not much can be done to help. Very sad story. Best wishes...Joyce
Reviewed by Denise Contreras 1/4/2008
My heart goes out you and your son. Your a very strong person. Sending Prayers to you and your family..
Hugs
Reviewed by Tinka Boukes 1/4/2008
Have to ditto Amber here...been down this road before!!

Love Tinka
Reviewed by Amber Moonstone 1/4/2008
I believe that people are given lives that God knows we can handle. This is a remarkable story..Thank you for sharing your words with us.
Peace, love, and light,
Amber "V"
Reviewed by Joyce Bowling 1/4/2008
A write that makes one want to hug their children and grandchildren and say thank you more than I already have for their health. Sad write that draws attention to the heartache that the parents struggle as well as the suffering of both. A touching write my friend, well done!
Blessings,
Joyce B.
Reviewed by Georg Mateos 1/4/2008
It's so right to focus for once on the parents, the sick child suffers and then again, the parents are doing it also but putting a face covered with courage when their souls, inside, are crying.
As always...great!!!
Georg
Reviewed by Felix Perry 1/4/2008
Heart wrreenching story for any parent to read for we all as parents dread the sight of our children hurting or ill.

Fee
Reviewed by Karla Dorman, The StormSpinner 1/4/2008
Karen,

An excellent story...painfully penned reality. Well done!

(((HUGS))) and love, Karla.


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