>> Monday, June 1, 2015
It doesn't seem to make much difference what the answers are, and if the why's are brought to light. We don't DO anything with the extra information.
He is doing so much better since taking the extra Vitamin D. He had a bad round of one day of 5 seizures when he was getting sick, but aside from that: one seizure a day. Maximum of two. His energy is up, he is more attentive, more persistent and just...better. Thank you Vitamin D.
I have stopped looking for answers to everything. I am tired of talking and talking and getting....nothing. Of getting put off. I went so far as to lay my reputation and time and money on the line and aside from thank you's, we are no closer to being able to solve the why. I admit it, I am jealous of those parents that have answers after writing some letters and visiting a couple of Doctors, I am. What makes Bug's story not worth a happy ending? What have *I* done differently than those other parents? Because, if we are honest, there are very few Doctors that have made finding out what is not working inside of him a priority. Mostly they are reacting to my questions. And while I am good at asking the right questions, I am getting tired. Tired of the answers either being not noteworthy or a shrug of the shoulders and: I don't know what to do with this. And back to the research I go. BUT...At THIS moment, I am really tired.
Don't say burned out. I will cut you. I am not burned out, I am frustrated, feeling like helping Bug will NEVER happen and tired of being wrong for being right.
We have been at this place for 3 years. I have been meeting people, helping people, sharing company information for organizations that may be able to provide an understanding of how his life took this turn. And we get: lost results, our work praised for other people, organizations being valued for the work that *we* have done and people complaining about how we don't do enough for them. How I ruined it.
Here's my response:
Sorry. You can't blame ME for YOUR failure. You will, but I won't take it. I will rise above it and continue on without your blessing. I don't need it. I will continue to help people where I can, looking for something to help my boy in the meantime. I will do those things I KNOW will help the most people and I will not think again on how you think I did something TO you by not lavishing praise on your efforts that are ONLY self-serving. You go ahead and keep taking credit for our work, you go ahead and pretend to be something wonderful, because the people that KNOW, know you are faking it. There is no sincerity in your words.
So, this summer, while he smiles more, and while he stomps and fights with his little brother over who gets the Batman Car this time, I will keep plodding along looking for what the hell he has going on. Tired as I am, there is no one else that loves this little monster like I do, and I will make sure he has every chance to be heard. Even if I am being dismissed, HE won't be.