In A Perfect World

In a perfect world, I could afford all the therapies that Seraphina needs. She would take water therapy, music therapy, hippotherapy, have an OT come to the house, work with a BCBA on ABA therapy and have endless hours of speech therapy. In this "perfect" world I would still have time for my other 4 kids, for my husband, for my house and somewhere in there for me to be who I am supposed to be in this world.

This world however is not perfect. We have no therapy outside school and that BCBA hasn't even finished her analysis of Seraphina so ABA therapy in or out of school is non-existent. Each day that slips by I wonder what I am missing and how I could prepare her for the world she will one day step into. While fighting on the phone with insurance trying to make appointments with the school and keep up with the other kids, I am up at night wondering what will happen one day when I am gone? I wonder how this world will work with assimilating my child into it.

This weekend I was shocked when adults cast dagger eyes on my child whom God created and felt her presence was not welcome at the church we attend. Since that day things have hurt just a little more. On Monday when I picked up my Girl Scouts, one child asked if Seraphina would be there. When I said "no" thinking she would be disappointed she exclaimed "good she's annoying". Let me tell you I never chose this life. I did not choose to have a child that would take all my time from my other kids to be ridden with guilt that I cannot get out from under no matter how hard I try.  Like the video I watched yesterday said "I was drafted" just like every other special needs parent.

This isn't a perfect world. I don't pretend for a moment this world was made for Seraphina but what I do know is Seraphina was made for me.

I may not ever be able to afford art, music, hippo therapy or ever get an ABA Therapist in my house but I will work every day of my life to make her life just a little better. I will work to make sure that she knows she has value and is loved.

Seraphina is nothing what I imagined. Just today a friend asked what I wanted for Christmas. If I could have anything, it would be having a typical child like the rest of my kids but I know that isn't possible so instead, I ask for people to take a moment and pause. I ask people be more gentle and kind to others and I ask others not to judge and if you have a little time, to take a moment to watch this video because then you will get a glimpse into our world and daily life....and now my friends back to the popcorn eating junkie who is insistent on wearing "jammas" all day today.


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