A life less lived

Autumn has been asking for a Wii. We see the commercial for Wii fit often. I'd love one but they are expensive.Here is how the conversation went....
Autumn:Mom can I get a Wii
Me:Well they are very expensive, I don't have the money.
Autumn:How much do they cost
Me:With all the added stuff probably $300
Autumn:Wow that is alot. I know how we can get one for free!
Me:You do?
Autumn:We'll ask Santa!!
Got to love kids.

I've been searching for something lately and I just realized what. The people I am acquainted with here are small minded. I don't claim to be a genius or superior in anyway..... Let me explain. I spent all day in the hospital Tuesday while Aiden was poked, sedated probed etc. Watching sick kids walking past, seeing parents wringing there hands waiting to hear about the status of their child in surgery. Wednesday the parents I most associate with from Autumns dance class just made me feel like an alien from a foreign planet. I have known them for three years and I guess this was just the last pickle in the jar I needed to make me lose it. One mom was ranting and raving about a clerk at the coffee shop. She was on her feet pacing,redfaced, waving her hands in the dance studio because the coffee girl forgot to punch her coffee card for a free coffee. The other moms joined in to the freak show egging her on about a free cup of coffee that was due. I sat there wondering how she would cope with a child with a disability, how she would handle all the doctor visits and therapy sessions. How would she have handled her seven month old baby laying in a hospital bed after open heart surgery? A Free Coffee? That is what she was up in arms about. I sat there and watched the show. Sad that this was the fight she found so important to fight. How my life has changed. Nothing else is that important. The health and happiness of my kids, my relationship with my husband, my parents . These are the things worth fighting the fight for. All else seems small and silly. I don't think I would be this aware or awake without a child with Williams. It really did change me to the core. Two weeks ago I had a heart to heart with a grocery store check out woman. An older woman I see in the store often. She was so upset and complaining loudly because her last customer told her how to bag the groceries. Are you kidding me. Well I listened as long as I could and then as it approached my turn at the register i explained that other people should not upset her like that. Not to let this ruin her day and to think of the things she is grateful for. I then told her about Aiden and our journey with WS and heart surgery. Her jaw dropped, her eyes glassed over and she said you are right. I shouldn't let something like that get to me. I don't really know why I chose to tell her our story . I guess I just found the issue so silly. Wake up lady, there are much worse things in life. I feel the need to find a grounded friend. My two best friends live an hour and one and a half hours away. We talk on the phone but don't have that daily support. Maybe I'm still in a state of depression or is it enlightenment? What would Buddah do? I'm still reeling with the idea of my mother going in for cancer surgery. That will be my Tuesday this week. I wish fighting about a punched coffee cup was the highlight of my week. Silly silly ladies. I find myself joining in less on the conversations because it is harder and harder to feign interest. For now they serve a purpose, I go out to dinners, my kids go to their kids parties and it is at the very least topic for a very long blog.

Wow it was easier than I thought it would be. My very first slideshow!! I love my babies.

The TriState Fundraiser was amazing. My inlaws and sister inlaw came up from North Carolina. My parents attended as well. I was so impressed by the size of the turn out. Six hundred and fifty people. The auction was great and I danced for the first time in I don't know how long. My Dad cried the entire night. The most sensitive construction worker I've ever seen.It was kind of strange seeing Aiden's picture come up on the screen during the slide show. He has WS and we were surrounded by family and friends that understand. I cried during Rob's speech. He mentioned the therapy sessions and doctor appointments that Julia and Jill have to deal with and it just hit me hard. They get it! I left there with a smile, the food was great, the evening was fun and so much money was raised to help the WSA.

Aiden's much loved cardiologist is leaving Schneider's hospital and going to CHOP. We met with a new Dr. from the cardiology department last week. Aiden cried the entire time we were there. After a very unsuccessful echo she recommended doing a sedated echo. This will be our first and I'm a wreck. The cardiology visits are hard enough and now we have to be admitted, have him fast, and then the ordeal of finding a vein for the I.V. The last time they tried to place an I.V. they had to stick him ten times (three people tried and failed) . My poor little guy. To make matters worse I went online and read about all the complications, rare as they might be, that are associated with the type of sedation they use. Some days I feel like we have a normal family and then days like today kick me in the butt. I had to schedule the sedated echo, reschedule our endocrinology appointment and ran into his OT in a local store. I took him to our very first mommy and me class on Tuesday. He did so great. Played with all the toys, sat through most of circle time, ate his snack at the table with the other kids. I really had to fight hard not to cry . I was so overwhelmed by how far he has come and how much he has had to go through. the other parents have no clue how hard my little guy has worked to be sitting at that snack table with there kids. Hopefully the class will continue to be a big hit with him. The sedated echo is on the same day as our class (tuesdays). I will have to pull him out before snack time on that day to drive to the hospital and have the procedure done. How many of the other moms will ever have to do that?  All in all I take what is thrown my way as it comes. Each day we love Aiden for Aiden and Autumn for Autumn. Looking forward to meeting the other families at the fundraiser this week and my much needed ,greatly earned birthday weekend away from the kids next week.