Sophia – Spring 2016

The little human in the image above is named Sophia, and she is my youngest daughter. She was born with a rare disorder known as Turner Syndrome which you can read all about here if you want to know more. All you really need to know about this image is that Sophia was four years of age at the time of this sketch. Due to her condition, however, she looks as if she were only a toddler. She cannot walk, her hair barely grows, she is extremely short, and she has never spoken a word, but she can scream and cry quite well.

I could say some BS about how enriched my life has become with a disabled child, but I’ll be honest, this shit sucks. It’s hard work and it never stops. You never get a break. You don’t get a life outside of home anymore. You can’t take her anywhere. Last time we did go out we went to a pizza place. She threw a small packet of ranch sauce at the man next to us. It exploded on him, we left. Like I said, it’s hard.

With all of that said, however, I love this kid to death. She drives me up the wall every day with her antics… but when she gives me that goofy smile you see in the sketch above… I melt every time. She is the epitome of innocence and sometimes I envy that about her. She will never have to understand how scary this world really is. She just keeps doing her own thing, marching to her own beat while the rest of us keep pretending we know how to adult the right way. I want to be more like her honestly, just hit you with a sauce packet and scream in your face…

7 thoughts on “Sophia

      1. Thank you. I have been working with children for ages and It seems like I think I am still at work trying to figure out something. There is a method called “Marte Meo” where you take a video of small every day situations and the therapist then finds the small sequences where you see the quality contact situation and the family gets help to put the right words in the situations to help the child understand what’s going on. At least it’s a very positive way to make small progresses in the difficulties

        Liked by 1 person

      2. I’ll have to check hat out. Right now she attends physical therapy three times a week and speech once a week. I don’t have much hope for her speech development. After all this time she still mostly uses the same few noises that she learned early on while at home, but her ability to walk one day looks promising. little things like a new noise are huge in our house. Always a cause for celebrations.

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  1. I’ve come across many humans I’d like to throw a packet of ranch sauce at… 🙂

    The drawing of your daughter is adorable! I’m sorry to read that she has been cursed with this difficult disorder. I hope you continue to create many more happy memories with her! By conquering this together, you’ll always have a very special bond with each other.

    Liked by 2 people

    1. Thank you for the kind words. Her condition sucks but we have gotten used to it for the most part. She is healthy so far as anyone can tell so at least things aren’t as bad as they could be.

      Liked by 1 person

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