Wednesday, May 19, 2010


So, did you figure out where she was happiest?? Yep, it was in the pool. Which is where we spent a good deal of our time. That was awesome.

Todays lesson is all about reality.

How so you say?? Well, perfect example happened yesterday. Brigitte gets home PT and OT services since her medical fragility has not allowed her to be in a clinic setting. Thankfully, she has progressed to a point that we are making the transition to outpatient therapies in July. This will allow for more and/or different therapies to take place. It is also an opportunity to take Brigge out of her comfort zone. Currently, she feels very safe at school and very safe at home. We venture to new places and well.....all hell breaks loose. Which is why Disney was a partial disaster! She will have an opportunity to take place in pool therapy and also some animal integrated therapy in which both will help with the sensory issues we are seeing so many problems with.

Part of the problem has been brought on by us. Yes, I said us. Her family. The very people who love and care for her so tremendously. We have created a bit of a brat. I do remember making this prediction a long time has come to fruition ten-fold. We have done everything for her. We also laugh at her bad behavior. I will share a Disney story here.

On our last night before leaving we decided that we had had enough of buffets, characters etc. We spent the afternoon at the pool and were sick of eating "pool food." We were craving good food, but were to exhausted to trek on out and see what we could find. We decided to settle at Il Mulino at the Swan. Easy Peasy. Pasta and wine does wonders for everyone, right?? What kids can't find something they like at an Italian restaurant. It was perfect. Add to the fact that it was EXPENSIVE...that meant there was no need for reservations!!! Most families on property were not eating here, but at the cafeteria. For those of you who know my children, we can really take them everywhere. They are very well behaved and we are always complimented on their behavior. So who would figure this would be a problem?? Not I. Not Bryan. It was apparent that the hostess felt otherwise. Lets just say she wasn't thrilled to see us and it was even more apparent by the table she chose to seat us at. I will add that we were not the only family in the place.....but we were the only family with more than 2 kids. Things started out relatively well. Bread was on the table, kids had drinks, dinner was ordered. No complaints. All I was thinking "I'll show that hostess." Ok, Ok.... I was really thinking "hmmmpfh....I'll show that bitch!!!" Well, Brigitte was about to do it for me. At the top of her lungs Brigitte proved the hostess completely right by screaming "FUCK!"...repeatedly. Yeah, good times. As mortified as I was, all I could do was laugh. The kids laughed even harder. I think Bryan was choking on his breadstick. Good Times.

We are part of the problem. A big part. Brigitte's therapist brought me back to reality yesterday. I was telling him how demanding Brigitte can be. She had me thinking the other day "I can so see why parents shake their children." She drives me to the edge of every cliff, every single day. The kids get sick of hearing her and give her what she wants. Worse though, all of us have given her everything she wants because the majority of her life has been so difficult. We have all done what we could to help her. Make life a little bit easier.....on all of us, honestly. So there I was, feeling responsible for partly creating this monster!! For allowing it to go on even though I fully knew a long time ago what the implications would be. Jon, her PT, reminded me "Shannon, she almost died.....multiple times. None of you know what her future holds and you all do what you can for her to make her difficult life a little bit easier and love her as much as you can. There is no fault in that."

He is absolutely right. I know this. I have thought about it constantly. It is what keeps me up at night. I know the kids think about it. Its hard to know what Bryan thinks about it. If the gray in his hair and his blood sugar told the story....I'm sure it would say it is his biggest worry too. The problem is, nobody talks about it. It is the big white elephant in every room.

So the moral of the story is, don't hide behind your reality.

Here is a picture of our Disney reality. I LOVE it. It is one of my favorites!!

1 comment:

  1. Yes, if THAT isn't a perfect picture... tells a THOUSAND words!