Louisiana writes of the ups and downs of raising children with special needs, as experienced by her and others like her.
No matter how I may appear to others (calm, confident, in control), I have those days where I wonder if life is worth all this pain, whether I'm being a good enough mother to my children, or worrying about life unraveling right in front of my eyes.
My kids are everything to me, yet I wonder if I did the right thing by adopting them. My kids are not your basic, every day, "normal" kids. oh, they are great kids, don't get me wrong; yet the demands of their phsyical/mental/emotional needs are starting to take a huge toll on me.
It happened again today, just as soon as I woke up. I woke up to the powerful, yet familiar stench of fecal matter. My daughter, Jodie, and son, Todd, both had major accidents in their diapers. It was also all over their beds.
I groaned.
After taking care of that, little Bjorn fell out of bed and hit his head. He wasn't hurt (thank God!), but he was scared; he cried long and long; it took a good while for me to calm him down.
Next, Ronee' fell down the stairs (she got off balance; down she went; again, no serious injuries); she now has a nice goose egg on her forehead from where she rammed her head into the wall. After that, Johnny slammed his finger in the door, taking the end of it slap off. (Bill has since rushed a howling Johnny to the Emergency Room, to have his finger repaired.) Blood everywhere. It was nasty. It was gross. It looked like I had done a real good hatchet job on one of the kids; what kind of mother must I be, if someone saw all...that...blood??
Ronee' took one look at all the blood and promptly fell out in a dead faint. (She can't stand the sight of blood.) Now she's in bed, nursing an upset stomach (not to mention, the goose egg on her forehead!).
NICE.
A mother's work is never done, particularly a mother who happens to be a nurse. Or a mother to children with special needs. *Sigggh*
Roberto had one of his terrible temper tantrums, too, which did not help. He didn't get to go to therapy; his favorite therapist was out, sick. Of course, you can imagine how he reacted. He threw a duck fit. He threw his crutches at me (thank God he missed!), then he head-butted me, nearly knocking me down. I immediately put him in time-out. He reacted by kicking a nice-sized hole in the wall and screaming obscenities at me.
I walked away; I wasn't about to give him the satisfaction or let him know I was bothered by his outburst.; yet when I walked away, I started shaking and crying uncontrollably.
Upon returning home from the hospital, Bill found me leaning against the wall, sobbing heavily. He took me into his strong arms, listened to me as I sobbed out my story about how Roberto behaved. He didn't say a word. He just held me, let me cry, all the while, patting my shoulders, smoothing back my hair back from my damp, tear-stained face.
This is just a small portion of what I, a parent to children with special needs, must face on a daily basis. Raising any child is hard enough; raising a child with special needs or serious medical problems can be even more so, almost to the point of being impossible. So many variables, so many things can go wrong when you least expect them to. I just thank God I have Bill, my husband, in my life, as well as my parents and my wide network of friends. They can help me too whenever I need it.
My children all have health problems (okay, not all, but a goodly portion of them do) that affect their daily lives. Some are so disabled they require 24-hour medical care (Jodie, Todd, Roberto, Johnny, others); othrers rely on aids such as wheelchairs, braces, walkers, crutches, or canes because they can't walk (or don't walk well); still others cannot see or hear--or even speak. Some have serious allergies that can threaten their lives if exposed, and some carry scars from accidents, burns, or surgeries, causing people to stare at them without provocation. Some of my children have serious behavioral problems that cause people to flinch or utter cruel remarks.
Despite all of this, I, as their mother, have learned to see the beauty in all of this. To me, my children are perfect: they are beautiful in my eyes. I have learned to overlook the obvious in all of their situations, see the potential in these kids. They are all unique in their own special way; their disabilities are only a small part of who they are. They have triumphed over all the odds placed upon them by uncaring doctors--or other people in general.
I wish people could see all the things I do: that first smile, hearing their first word spoken by supposedly silent lips, seeing those first, shaky, wavering steps, seeing that fighting spirit in a child lying in a hospital bed, hooked up to tubes and monitoring equipment as they recover from life-threatening surgery, illness, or injury.
I have seen all of this (and much more) in all my children. They are nothing short of incredible, and they are all living, breathing testiments to the power of the human spirit; they are all miracles.
I realize now just how blessed I am to be their mother.
It's a tough call, so very isolating, and you wonder if you will ever have a moment to just treat yourself to even the smallest of niceties, but then, to see them progress, grow, keep on living where they wouldnt of otherwise, becomes that treat, and the rewards are clearly visible...One must always take a little time out though to recharge
Hugs to yah your friend in OZ Ch'erie ( who knows the life)xxxxxx
Reviewed by d. k
6/20/2007
What a wonderful write! Such insight into the world of parents raising children with disabilities. I love how they just love the children and see past all their disabilities! Super work!
Karen, I don't know how you keep this going as you do, so very real, it grips the reader with astonishment at the characters and what they go through! Brava!
I don't know how any mother can raise one child in today's society; compound that with special needs, times sixty........I don't know how Louisiana keeps her sanity!!!!!!! An excellent, illuminating peek into the world of special needs parenting; well done.
(((HUGS))) and love, Karla.
Glad it's her and not meeeeeeeeee..............LOL I'd a gone CRAZY!!!!!!!
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