Out of sight and out of mind

Earlier this week while in the radiology waiting room as Sophie and I waited to be called back for her swallow study a woman walked in with a beautiful little girl. I was drawn to her like a magnet, her beautiful golden blonde hair with fluffy curls on her perfectly round head. She smiled and asked her mommy to play a ballerina video on her tablet, she giggled and stared into her mothers eyes with so much adoration, her words so clear and appropriate. She could not have been much older than my Sophie, a little chunkier and taller but right around the same age. I looked at her and looked at my beautiful girl and could not help but feel my heart sink and with it a sadness crept over me. I noticed the girl’s mother staring at my little big girl. I wondered was she wondering why she was curled up in my arms like a baby, or why she was laughing uncontrollably for no apparent reason or why she only made humming sounds instead of speaking. Just the thought of it all made a knot in my stomach. I had begun to allow those overwhelming feelings of sadness creep over me. By the time we walked back to the procedure room I snapped back into my reality and reprogrammed myself to be in control again.

On my drive home it was all I could think about. I don’t get out much because of Sophie’s health, we pretty much live in our home to limit exposure to bacteria. I rarely take her out which also limits my exposure to society. I think the last time I was with other typical toddlers other than my Tristan was at the kid’s birthday party last year in April, that was ten months ago!

The more I think about it I have come to realize I just don’t think about where Sophie would be developmentally if she was a typical child. Because, she is not a typical child therefore it would not be fair to her or myself to compare her to any other child. I have come to accept her just as she is and her delays and sensory needs are “our” normal. I believe my separation from society have helped me move forward with acceptance and have helped me not dwell on her delays. Sophie is a toddler in many aspects but she is not a typical toddler by any means and that’s completely fine. But to be reminded of where she should be developmentally is very painful to imagine especially if I have to be reminded all the time.

I don’t want to compare her because she deserves better than that. In that moment when I saw that beautiful little girl I admit I wondered what my daughter would be like if  she had been born complete with all of her chromosomes. I wondered what her head would look like and how it would feel if she didn’t have microcephaly, would she have thick curly hair like her sister if she was healthy. How would she sound without  the high pitch? Would she have a lisp like some of her siblings as she began to put her words together. How would she experience the world if she could hear it the way most of us do. Would she like to watch ballerina videos or would she be more of a tomboy? Like a flood all the what if’s began filling my mind and soul. It’s a paralyzing feeling, it’s almost uncontrollable, it’s unbearable and the feeling of helplessness is the worst. Why must I experience those moments of what if…….

Even now as I am writing this post I am feeling the pain of the what if’s, with every tear that rolls down my face the pain falls deeper into my soul. In moments like these I am grateful that I don’t have to be out there in the everyday world that I am hidden away from all the reminders of where Sophie should be. I don’t know if I would be strong enough to cope if I would have to face that everyday. Out of sight and out of mind and that is exactly what I need. Living in my normal helps me focus on what Sophie can do and who she is rather than where she is supposed to be developmentally or who she could have been. Sophie is who she was born to be, my child. My amazing daughter that strives to live and touches more lives than any of us can imagine.

Even now just two months shy of Sophie’s fourth birthday the pain is so relevant, keeping it locked away does not make it easier and the truth is I believe I will always mourn the child she could have been. I love her more than words can describe but my truth is her existence will always bring me heartache. Her existence also has a balance, Sophie also brings us so much joy. She has taught me the true meaning of life, love, compassion, humility and happiness.  She is stronger than anyone I know, she is determined and brave, she is my hero.

Out of sight and out of mind is what keeps me strong right now. Even after almost four years of this life with my amazing girl I will admit I am not ready to deal with the world when it comes to my child with special needs. It’s not fear for her its fear for myself, I am not ready to deal with ignorant people, I’m afraid I will snap.  I am blessed that she will never understand the concept of ignorance or cruelty, she is just to pure for that.

 

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