Posted by: Joan Graves | September 5, 2013

More Or Less

Everybody knows how hard parenting is. We grow up hearing about from our parents but don’t understand until we turn into them. After having my first son I thought, “Pffft. What are people talking about? This parenting thing is a breeze. What a bunch of whiners.” Of course, I didn’t know my child was autistic. When the doctors told me, I had little light bulb moment. “Ohhhhhh.” I thought about how quiet he was, how he preferred to play alone and how he never got into stuff. I looked at the doctor and said, “Yeah, see I just thought I was raising a great kid. Totally missed that autism bit.”

 

Raising special needs kids is so far removed from regular parenting it should have an entirely different title. I’m ra

 

ther fond of Superwoman or Odds Defyer. The problem is rarely do I ever fell I live up to such a title. Now, before you go, “Awww”, and feel sorry for me, I’m not saying I’m a crappy parent. It is just that with special kids there is ALWAYS something more to be done, said, thought, yelled about, or cried over.

 

I’ve always thought it odd how some people look at special needs kids and see less while the parents of the kid see only more – more doctor visits, more therapy sessions, more stress and more pain. Most of the time our pain is emotional, but when it is physical it is game changing. How am I supposed to help my kid be more when all I have is less?

 

In my lower back, I have a tarlov cyst, at least 2 bulging discs and spinal stenosis. As the spinal stenosis continues to narrow my spinal column, pain is referred to other areas such as my side. Now, all the moves I have perfected to avoid back pain have to be rethought to avoid side pain.

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Too many times getting to a standing position causes pain so intense sweat breaks out on my forehead and literally sucks the air from my lungs causing me to feel faint. I’ve had episodes of standing up only to have a massive pain wave drop me to my knees. Some days are better than others are but I cannot recall the last time I had a day without pain.

 

For a girl who was once extremely active and independent it is hard to accept my limitations. Emotional pain adds to the physical when I’m forced to cancel, give up, or leave something I enjoy. It takes the will of God to make me sit or lie down while others do things for me.

 

It’s easy to give in to fear and despair, thinking the days ahead will only be worse. Yet, when I feel I’m drowning in a sea of hopeless, unending pain and think my quality of life is in a four-alarm nose-dive, I remember one simple truth. There is someone, somewhere on this earth who is actually praying to have a life such as mine. I need look no further than the next room to see that proverbial wisdom become reality.

 

My son DJ cannot speak or chew. He walks with a quirky gait but doesn’t come close to running. He is not potty trained and needs assistance with every part of his life. I would imagine he would like to have the ability to move that I do. I am sure those suffering from paralysis or limbs would trade places with me. When I get depressed about the things I am missing with my kids, I imagine how parents who have lost a child would celebrate just knowing their child walked the earth.

 

When I tally up the end of each day, my mind reminds me that I am giving less to more and more things. A desire to do, be and say more nearly overcomes me as I think my dreams of life need more of me. I have to stop the more-less debate and remind myself that my life is nowhere close to what I’d like it to be but it certainly isn’t as hard as it could be. Moreover, when I look into the sparkling eyes of my special needs little boy I see how less is so much more.

 

 

 

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Responses

  1. Reblogged this on The Joan Zone and commented:

    This is a post from the P3 blog but fits still fits The Joan Zone

  2. Google “Spoon Theory” if you haven’t yet. When people “don’t get it” quote them the spoon theory.

    Decide which tasks are essential, do those, the heck with the others unless you are able.

    Huggz

    • I hadn’t Googled “Spoon Theory” but did. Cool. Thanks for the tip. 🙂

      • You are very welcome. Living with disabilities is hard especially when everyone says you don’t look sick.


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