So, today is my day off, I don't have to babysit my grandson. I was able to sleep in which felt wonderful and then get up and read the paper and have coffee while trying to plot out my day. My 17 year old daughter has work today and my 14 year old son will be leaving for a birthday party/scavenger hunt. That will leave my ten year old daughter home with me and my sweetie.
She can prove to be a real challenge. With her diagnosis of Mitochondrial disease, we kind of let her become both a brat and too attached to us. When she was born she was very sick and I went through a lot with her. As I said before, dad couldn't really handle it so I was the one to walk the journey with her. It took two grueling years to get to her diagnosis. Those two years consisted of constant hospitalizations, multiple surgeries, feeding tubes and scares of losing her. One scare in particular was one of the worst days of my life as I stood there alone and they told me they didn't know if she would make it......and then rushed her into emergency surgery.
She had to have a muscle biopsy to receive her diagnosis and that left two 2 inch scars on each thigh. She was only two years old when it was done and it was so painful that she couldn't move. She just laid on the couch for over two weeks while I fed her and gently changed her diaper. The day I was given her diagnosis I was; as usual, alone. It was devastating as the doctor explained that there was no cure and at the time very little research. It was explained to me that she would be globally delayed, which she was and then she would level off but never at the same platitude as other children and then she would lose all her skills. I was told that there was no way to give me any time table because of the lack of research. In the beginning Abby went to physical, occupational and speech therapies for quite awhile. She was non verbal for two years and didn't even cry. We taught her sign language! Eventually over time she learned to walk and talk and feed and dress herself. Now at ten years old, she appears normal to most outsiders. She still can't do many things that most children can.
She suffers from chronic migraines, muscle weakness and pain, chronic fatigue, heat and cold intolerance, GI distress, high blood pressure, allergies, weakened immune system, respiratory issues, heart issues and she is very small for her age. She's smart though. It has not impaired her cognitive abilities yet. With the knowledge in the back of my mind that I would out live her, I have celebrated every birthday on a grand scale and as if it were her last and I have spoiled the hell out of her, therefore creating a cute little monster!!! Now I am having to undo what I have created, explaining to her that having this disease does not excuse her from being a pain in the butt!! She's getting a little better. I have always been honest with her about her disease and she can explain it fairly well to others. She understands now that if she does things like goes to a peers house for a play date, she will pay for it later with fatigue and body pain. The only thing that I have not come out and said to her is that it will probably kill her before we go.
She was granted a Make A Wish a few years back and the family was able to go to Disney. She loved it and got to meet every princess which was her goal !!! She is a special little girl. I believe that because of what she has endured in her short ten years, she is a much more compassionate kid than most ten year olds. She is having a hard time right now with her brother being in jail and with my limited time for her because of having my grandson 40 hours a week but I am working on doing special things with her and for her. I have also put her in therapy and she really likes her therapist which is great. I just felt that she really needed that outlet......like I do !!! Well, I better go play Easy Bake Oven with her. Peace and Love
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