Posted by: Sarah : Category:
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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. Donna, 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. Kacie 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 Donna’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.
Our youngest Kacie’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.
Hi! I'm Sarah, of Casa de Perfect.
