Monday, February 18, 2013

Pretty Distractions

May 21st. MAY TWENTY FIRST! Thats how long we have to wait to see the Mitochondria disorder specialist! On one hand I think, well if they are making us wait that long it must not be urgent right? On the other hand that is a long bleeping time!!!! Every second that I don't know I start to go crazy, and when I try to search for answers I see ORGAN FAILURE, BLINDNESS, DEAFNESS, Life Span- MOST MAKE IT TO ADOLESCENCE, REGRESSION REGRESSION REGRESSION!!!!! I find my self saying " I take it back God I'm fine with Cerebral Palsy she won't get worse with cerebral palsy and autism, I can make those better, there is a bit more certainty in her future, I know she will struggle but she will be alive and healthy. I'm good with that. Can I go back to that PLEASE PLEASE PLEASE?!" I hope I am being dramatic and I will see the specialist and he will tell me that sometimes theres no regression or it will just go away and then I will come home and start a Blog called "Mitochondria disorder: don't panic it's not so" 

Every time I set food in front of Sadie or pack her lunch I wonder if I'm feeding her the right things, will this bagel make her slow or tired? I don't want to change her diet until I talk to the doctor. I have changed her school schedule to a shorter day so she doesn't get so tired, I have lessened the amount of therapy we do each day. I used to want to build up her endurance mentally and physically and now that I know that is not what is healthy for her I find myself looking at her behaviors and everything in a whole different way. She's tired, it's not all weakness, or the spasticity or Autism. She's tired on top of all that. All I can do right now is help her through the day. More snacks. More rest. These little changes have helped her and yet have confirmed that this additional diagnosis is there, in her body and always will be. 

I feel like a breakdown is edging my thoughts. At first it's brushing through my layers like a paleontologist's brush softly getting to the bones. At times I have sat in my room and tried to make myself think through it, get it over with, feel sad, feel sad about what might be. Dig those feelings out, force them out. But before the cold shovel can plunge through, my mind closes. Blank, black nothing starts from the outside and rushes toward the center of all the bad thoughts like turning off an old television set. My mind refuses to go there. I don't know anything. I won't know anything until May 21st.

I have found myself desperately needing a distraction. On a day I was having a rather hard time I found comfort in the new Land of Nod catalog. I know it's silly and superficial but I love design. I crave it. There was a spread on kid friendly adult spaces. I looked around the big formal dining room that wastes the space of half my small home. I blog here and we have our in home therapy in here. It's bare except for the computers and chase lounge I couldn't leave without at an estate sale. The kiddos have named it "The Pretty Couch".  I dove in and started planning and designing. I will fancy up our therapy/blogging room. That is what I will do until May 21st. I will do something I LOVE to do. I will share it with you in my next few posts. You will have to bare with me as I ignore the Disease in my daughter that I can do practically nothing about right now. Instead we are going to have distract ourselves with pretty things. I'm going to focus on making a space we can love to be in. A space practical for us and our situation. This is all I can do to stay sane at the moment and to not be scared all the time. Sadie thinks it's going to be fun. I've let her pick out some artwork for the space I'll be sharing that with you later. So please pretend with me that life is just the crazy normal we have always had, just until I know something, just until May 21st.


  1. I would be going crazy too! Maybe you need some ice cream? That always helps me!:)

  2. I love how candid you are. I appreciate your blog and I appreciate you!


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