Monday, May 17, 2010


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 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 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 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 can see where she was happiest!!


  1. My mom fed us cake and twinkies and whatever was laying around the house for breakfast and my sister and I turned out fine! I have fed Anthony hot dogs before at 7:30am :) You are a fabulous mother!!

  2. We live on Fast Food and leftovers (and of course Lil Debbie's cause they are the cheapest). It's our "sick reality". When you take your kids out, it is obvious that they are well taken care of, and very, very loved. That is the sign of a good mother.

    As for Disney. It's like everything else. The reality sucks - it's finding good memories in the crap. Feeding tubes, meds, behavioral issues - they are our reality. You could spend your life trying to "fix it" or you could spend your time loving your child the way they are. I am completely impressed by you for the way you love each of your children for who they are, right then and there. That is amazing. You back each one up, show up for games and practices no matter how bruised, tired, or food deprived, sleep deprived - all with a hug, a kiss, and a look of pride for your child.

    Thank GOD you realize that all the time, energy, and spirit you spend on your kids is to show them how much you love them. That it's not what clothes they wear, what game system they have etc, .. that matters. It's a mom that fights for all of her kids, all of the time that is the gift.

    Keep going Shann. Never apologize for doing your best. You have 4 amazing, wonderful, beautiful children, and that is unheard of in our world. Keep it up, I'll have your back anytime you need it.

    You are amazing, I am so blessed to know you.