Reality.....

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 ago.....it 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!!

Honesty.......

Todays lesson is all about honesty. So with that being said, it has always been my intention that this blog will tell it all like it is, no mincing words or fake pictures!! Just real life. Our life. Which hasn't been all that easy on so many levels. I promise to not sugarcoat things.....or people. Keep in mind though, these are my feelings. MINE. Not anyone elses. I will not apologize for them. They may change with the weather. I may feel something today, and tomorrow could be just the opposite. I can guarantee that someone will read into what I say too literally and take offense. Just remember this blog is not about you...it is about me and about Brigitte and how I am surviving trying to raise my 3 older kids and keep her alive all at the same time. If you feel "guilty" about something I may say or do...thats on you!! I might even lose a few friends or even family members along the way. Again, nothing new...it happens. I'm over it. I'm done apologizing for my life and how I live it. I've done it for far to long...and I always seem to be the one apologizing even when I haven't done anything wrong. Not doing it anymore!! I have a job to do. It's mothering my four children the best way I see fit. Trust me....sometimes I really suck at it. I fed them cake for breakfast every day last week because I didn't have the energy to go to the grocery store. Your probably wondering what they ate for dinner then?!?!?!? That would be McDonalds, Burger King, Wendy's, and Dunkin Donuts. I did manage to get a salad in them on Friday at the Pizza Wars. BONUS!!! Me, I don't eat that stuff. Lg. Diet Coke was sufficient for my 3 squares a day. I went shopping yesterday, so don't go reporting me yet. Last nights dinner was steak tips, zuchini and summer squash and they even ate rice cakes for snack. Brigitte's even had about 6 strawberries today!!! Whoot!!! Whoot!!!! When I'm on, I'm on!! When I'm off, I'm waaaaay off. They'll live. I hope. I'm sure there will come a day when they are forwarding me the bills from their therapist. It all gets blamed on the mother anyways. I will feel ok telling them "I did the best I could and I loved you," even if I was feeding you cake for a week!

My intention when I started this blog a few weeks back was to update you live from Disney. Welllllll, we all know that didn't happen for a myriad of reasons. The biggest being the computer issues we had, but the other being that this "wish trip" wasn't all we thought it would be....or all I thought it would be. I am settling in back at home....slowly. I think they call it Post Disney Depression...even though when we were in Disney, I wanted nothing more than to be back home. GO FIGURE!!!!

I spent months planning for this trip. That was probably my biggest mistake. I had heard so many wonderful things that happened for Wish Families on their trip.....none of which happened for us. I don't want this to come across as complaining. Really, I'm not. Just consider it a lesson for all who go after us. Wish family or not. Let it happen.

Brigitte had been having alot of issues prior to us leaving. Things we have always seen, but haven't been able to deal with because all of her medical issues have been front and center for so long. These are behavioral in nature, and things that we won't be able to fix..... but will just make tolerable. She is having a hard time with noise. Loud and soft. She hates crowds. She bangs her head on the floor and hits herself now. Lots of "hand flapping" with over stimulation. Word retrieval....bigtime problem!!! Had we been focusing on these issues all along, maybe the trip wouldn't have been so bad....maybe we wouldn't have encouraged it to be a wish at all. Not beating myself up about it. Again, I do the best I can!! We are at a point where not alot can be done medically unless we make some major, major decisions...so lets focus on the things we can help right now. Neuro issues taking center stage! For those of you following over from the CarePage, if your wondering where her weight is, its down.....waaaaay down. 11.9 kilos at last glance. Ummmmmm...haven't we been there for about 2 years??? Yeah, I thought so too!! I know, I know. She'll get there. She will. When she is ready!

In a nutshell, despite all of the "issues" we experienced.....we really did enjoy ourselves. After figuring out what worked and what didn't. There was more of the "didn'ts" than the "dids"....but when it did, it really did!! Those are the memories I will keep in my heart. The others, not to be forgotten, just hidden away with alot of the other unpleasantries that come with "Saving Brigitte."

More updates to come. Soon. I PROMISE!!! It just has to wait until my dog stops puking and having diarrhea. Thats what I woke up to at 5am. If its not the kids its the dog. If its not the dog, its the husband.


I leave you with a few pictures...you can see where she was happiest!!