My normal

Sometimes life throws us in different directions, sets us on a path we never even considered taking. For me the game changer  was Sophie, my precious little girl, born with Cri du Chat Syndrome. I’ve talked about how hard it has been to adjust to my new life as a mother to a child with special needs and about my struggle to find my balance. It wasn’t until recently when I began the journey of finding my true self, without the mom or wife in me that I began to understand myself better. There were changes I began to make that would lead me to the place that I am now.

Letting go of the fear that my daughter can die was probably the hardest part of my emotional growth and one of the hardest fears I had to overcome, and although those fears are still somewhat present they no longer consume me. And in the process of letting go of those fears I found that I needed to pull away from certain connections, and so I did.

I found that being reminded that my child has a disability, constantly, was not healthy for me. Sharing her journey is important because through her I have had the privilege of helping others come to terms with acceptance of a loved one with special needs, and also because of her medical complexities she is a superstar in the medical field. There may one day be answers to questions that today go unanswered because of Sophie.

All that being said I don’t want to turn on the computer and see “SPECIAL NEEDS” plastered everywhere. Yes I want to raise awareness but I’m tired of the labels. I’m sick of doctors appointments and constant reminders of what my daughter can’t or is not supposed to do.

Instead I just want to live “My” normal life, I want to watch my daughter laugh and play and learn without the reminders that society does not deem her as an equal to those of us considered “typical”. Especially when the reality is she is stronger and has more determination and dedication than most of us. She fights to live and learn everyday despite how hard her body tries to shut it all down. I don’t want to think about how portions of her brain do not function, instead I only want to focus on the fact that is learning more and more each day.  I don’t care if it has taken three years to reach a milestone, the important and most valuable lesson is that despite the odds SHE DID IT and IS DOING IT!

All I want to think about is how beautifully she IS flourishing,  her brain is working. She knows enough to stand on her tip toes and try to look through a hole. She can use her hands to respond to you if you ask her if she wants something. She can hold your hand and take you to an item she wants. She can tilt her head back when asked in the bath tub when her hair is being washed. She can give you hugs, kisses and holds your hand, waves bye and will call me momma if she wants me. She will run and stand by the door at the first sight of me grabbing my shoes, keys or purse just waiting because she wants to go with me. There is truly so much I would love to brag about right now because I am so proud and because I see Sophie  for who she is, my daughter. But this would be a post with no end so I will keep it short. She is here, she is present, she is growing and learning. That’s enough.

At first I felt a little bit of guilt when I realized how much at piece I was without all the reminders, I felt bad thinking I wasn’t doing my part on raising awareness but I am. I am my daughters voice, I have this blog and I educate anyone whom I have the opportunity of educating. I may not stand up in front of thousands but I do enough and wanting the privacy and disconnect to move on to a better place is ok. If I am at peace and happy I can be a better mother, and that is my ultimate goal.

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2 thoughts on “My normal

  1. Tommie

    Sophie is beautiful and so much more than her diagnosis, just as my Olivia is more than just a child with 5p- syndrome. Good for you for moving beyond the labels and living your ‘normal.’ It’s what we all need to do in order to truly live these amazing lives with which we’ve been blessed.

    Reply
    1. My Dance in the Rain Post author

      Thank you Tommie. After these last few years I think it just takes time for each of us to find the right path that will be beneficial for us and our families. I know you have always allowed Olivia to be herself and not completely focused yourself on the syndrome. That is huge when you want to move on. But, only my experiences have been able to teach me that.

      Reply

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