Why “Redefining Perfect”?

This post is a re-post from when I first started the blog about why I chose the name of the blog.  It’s been a while since I went over how/why I chose it…and right now I’m drunk on Tylenol w/ codeine after burning the hell out of my fingertip…so copying and pasting is far safer than trying to write anything coherent. It’s aged and not very current, but it’s a good start until I have coherence for deeper thoughts.

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I chose the name of this blog for a reason. One of the things I’ve found my struggling with the most is a very selfish thought…how do I redefine my vision of my children’s “perfect” lives.

When we’re pregnant we all dream of our children’s future. We imagine what they’ll look like. Who they’ll look like. The sports they’ll play, the life they’ll lead. Perfect visions of a perfect future.

Our logical brains tell us not to expect all of our dreams to come true, but it’s fun to imagine.

I, myself, pictured my girls as gymnasts and dancers. I was a dancer, a singer, and I hated sports. I thought my daughter would always be the same. She’d have long hair like I did to play with and do up. I’d be altering her dance costumes as my mother did for me. It would be perfect.

They were born still in the image of perfect. Molly, my older daughter, had a nuchal cord and was blue, but screamed right off the bat and pinked up fast. She was gorgeous. Downy white hair, bright blue eyes, the image of her dad. Kennedy was tiny, four weeks early, my smallest baby yet…but perfect pink and smooth skin. Dark brown hair and deep dark eyes, the image of me. There was no hint of the challenges they would face, and our dreams remained intact.

As they grew and the small differences between Molly’s development and my oldest child’s started becoming prominent. She was frighteningly skinny, and she was not talking…at all. Then she was, but still so few words. We fought it, but eventually gave in to realize there was something different and we had to deal with it. It was our first, and we thought last, foray into the world of special needs. Speech Therapy, Occupational Therapy, Nutritionists. Our head was spinning. Today we face a future of a mild form of autism for her. It will affect her future, no matter how much therapy we do now. She will face challenges unique to her, and will struggle to join her world with ours. We will help her with this…but it’s not an easy road.

Kennedy’s first symptoms appeared at a young age, but we easily dismissed them. She had torticollis, but managed to overcome it when she started belly time and with some exercises with us. After that, we thought we were in the clear. Then the ‘airplane’ reflex in her arms persisted…and so we began therapy with her. But she wasn’t done there. She started coughing in February, continued for two months straight with intermittent fevers. We finally ended up with a diagnosis of CF, and then were referred to a neurologist because of her severe hypotonia. We’ve also detected a leg-length discrepancy. Her left side is also weaker than her right. She has been in the hospital seeing more specialists and having more tests then I ever thought my children would face.

So now I struggle with redefining perfect futures for my children. Do I think their limitations will restrict them in the long run? Maybe. Sometimes. I know that with determination they can overcome anything…but I have to face that none of these goals will come without bigger struggles just to attain ‘normal’, much less get beyond. That’s the part that pains me. Knowing that their struggles are greater. That their search is for ‘normal’ first, then beyond.

I will still have dreams for my children. I still believe that they each have the fire to achieve whatever they dream. But I’ve redefined perfect…and dream solely of them being happy, strong, patient, and kind…and hope that I can give them those important virtues.

About….

About…

Me
My name is Sadie. I’m a 29+2 mother of three. I have a son, DC that is 10 and 2 girls – M (3) and K (2). I was pregnant at my 21st birthday and have been a mom since. I’ve been a dancer, a dance teacher, a dance major…I’ve been a singer, an actress. I’m a craft-o-holic – I sew, knit, crochet, cross-stitch, make jewelry and decorate (my house when I can afford to). I’m currently just a mom and wife…oh, yes…and a writer. Nothing published yet, but I’m searching for an agent for my first novel, and writing my second.

This Blog
I started this blog in 2007 to unravel my travels as a mom to two special needs childrens. I vent, I moan, I whine…I run down my list of doctor’s, try to keep appointments…oh, yes…and still mom my 10 year old and wife my husband. In the meantime I also occassionally remember to educate. In November I began “Terminology Tuesday”, which will be reintroduced in 2008 (Christmas got the better of me). I’m also a HUGE supporter of state Early Intervention Programs. So this blog is a little bit of mishmosh…with a lot of mom and a little education thrown in.

The Fam
My hubby, E, is my biggest supporter. No matter what I take on he supports me in it in every way he possibly can.
DC is my 10 year old science geek. He’s brilliant in math, and not so shabby in science. He dreams of working for NASA. We support him in that dream because he’ll need to be rolling in the big bucks to take care of us in our old age.
M is my 3 year old. She has mild autism and RSS (both diagnoses also include ADHD…and boy is she ever). She’s the most intelligent little girl I’ve ever known and I love that she is learning how to communicate now.
K is my 2 year old. She has been diagnosed with Cystic Fibrosis. She also has severe truncal hypotonia, dysphagia, and sleep apnea. Despite her struggles to simply eat and walk every day…she is a ray of sunshine in our lives. She has the biggest brattiest attitude ever…but she can turn the world on with her smile (yes, I’m being corny and stealing lines…but it’s true).
We have no pets because I have severe allergies to cats and have begun to manifest a dog allergy…but we still wish for a dog…and a bigger house to hold such a creature.

Why?
Simply – I’m an attention hound. I’ll admit it. I love being the center of attention…hence my dancing/singing/acting/writing…
But seriously, I also needed a place to vent my daily struggles. Some days aren’t such a struggle, but some days are. A blog seemed like the perfect place…and it’s become a great fit for me!!