One year, two years and today marks three years. Three years…three years…it has been three years. I try to focus on the positive and the fact that Dani is still here with us, but the whole situation wears on you.
Then the “what if’s” start. What if I just called the ambulance that night, what if I was more vocal in the ER room and insisted they use an oxygen bag on her instead of right away sticking that tube down her throat? What if I went to the ER right away instead of waiting 2 hours? You see these what if’s eat at me and they always will. I normally have them buried so deep, but they surface, especially for milestones such as today. I carry this guilt that will never go away. I want to know if that doctor feels like this, is there any remorse, does this day affect her as much as it does to us?
Dani had many improvements since last year at this time. Down 5, count that 5 seizure medications, in addition to many other medication that various doctors have prescribed during the last three years. Even though she has regressed with tolerating her feeds, she continues to gain weight.
Many people ask how we do it? My best answer, you don’t think about it, you keep rolling with the punches because the minute you stop, everything hits you. You try not to daydream Dani playing with Abby or the Tank because it hurts too much. Why do you think I keep so busy, work, school and the girls’ sports? Because when I stop, Dani’s situation hits me. No, it’s not denial, because I am first to admit that Dani has medical problems, it’s just the way I cope with the situation.
I know most doctors are amazed that Dani is still alive despite her struggles, I have to admit that I am too. She has been in three different comas, seizures plague her on a daily basis, 5 surgeries, numerous hospital stays, medications and invasive procedures. She has been through so much and keeps going. If I went through everything she has, I would have given up long ago. And yet, she somehow still has a will to survive.
I thought that 2009 was going to be her year, but she is already running into roadblocks. For example, her neurologist moving to California, having to change medical supply companies and the possibility that she may be starting to go thru puberty. Why should I be surprised that things are not going her way? It is always an uphill battle that we consistently get knocked backwards. When does this little girl get a break or good news, because she is due some…
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