Bitter-sweet

It is AMAZING, we survived the run of 6 weeks filled with crazy drama, broken car, long-faced nurse, lack of nurse, technical malfunction and many other disturbances of the force. All sums up to an experience that Deedee will never forget. And we won't either...

As the camp staff and kids did a birthday celebration, I definitively felt touched... I hope we will be back next year if we are still in Newark... But most of all, I hope that Deedee is such an outlier that she will make it one more year, period. So far she's been quite a warrior and there is so much she wants to do... But the reality of it all slaps one in the face while all one can do is swallow hard, hold back the tears and enjoy the precious moments. And precious, oh yes, they are very precious!

I feel so sad that the camp teacher actually heard everything that our day nurse have been saying about her... All in all, she did her job and she is sweet. She was creative and pulled through at the end of the week... plus no one knows what was going on in her personal life. It really saddens me and pisses me off that our nurse simply is a loud mouth and doesn't behave as she should in such a place... I am a strong believer that you can say anything, but it is HOW you say it that makes it an effective comment. Instead of being assertive and happy, our day nurse prefers being aggressive and angry... which doesn't help her case.

All in all, things ran smooth. The only bad thing that happened just once was actually something that could be prevented (you think something is broke, look for the spare part and then inspect... do not pull before having that part... common sense...). The more you put together the small mistakes and the tolerance we have about them, the more it is certain that we need to get new help. I am sorry, but Mondays is an "always late" day... Lately it is almost everyday, as a matter of fact. And the absenses without calling us and the company... Ugh! And then answering phone calls that she shouldn't... And hurrying up when she should take her time. Spills happen because of that, emergencies as well. Not a happy disposition anymore, not a happy face... Then comes the responsibility factor, and the insubordination attitude towards any of her bosses: company and us. It is what it is. We have made the mistake of trying to help someone un-helpable... again.

Anyway... the nurse issues are all ridiculous, and soon will be taken care of. What is important is Deedee went out, met other kids, got to know what other kids do, did what others kid do, and felt the love in the way. She also could see how they were always asking about her, about why she was in a wheelchair, about how they could help her. It is bitter-sweet, but very meaningful.

We hope that one year becomes a reality, that she keeps on being away from the hospital, and that things run smoother s we can actually focus more on her rehab issues and on expanding her cognitive gain. I pray for enlightment, courage and health to do all of the above.