Friday, May 8, 2009

Me & My Lil Man

Today definitely didn't go as I had anticipated it to go.....will anything ever go smoothly? It's not that I had alot planned plus Dan & Avrianna had left this morning for Tomahawk so I had thought today was going to be a breeze just me and my lil man. NOT :( I got up early and saw Dan & Avrianna off, I was ready for the day, and Danny was a was my first appt of the day and that put me in raw form, augh. I had my second appt to donate plasma and I was excited to go, but with Dan not being home and me having another appt right after I needed to take Danny along. I called yesterday to let them know what they were in for and to see if they were ok with that, which they were.....until I got there. Then they felt uncomfortable with having Danny there. There were other kids in the nursery so I informed her to make sure no one touches his hands or face (for obvious reasons) and she couldn't guarantee me that it wouldn't happen because of all the children she had. Then I asked if he could just stay by me on the floor while I was donating and again they were not comfortable with that. So Danny and I left....I was so disappointed I was near tears walking out. I could see their reaction like that if I didn't call the day before to give them a heads up, but come on! I felt just instances like this I am very glad Danny doesn't understand cuz what a terrible feeling. Oh well their loss! No plasma from me for them :( Another botched attempt to do a good deed.
After that Danny and I went to the new house......he just LOVES hearing all the BIG "toys" out there. I'm for certain that if he was able he would be climbing all over the machines out there! He would be so proud sitting in one and being "one of the guys". But we all KNOW that isn't going to happen. Just a HUGE reflection day.....things like this morning to SLAP you in the face and put you right into place....SOCIETY SUCKS and how I allowed myself to "go there". What a gorgeous day and I see the neighbor kids (younger then Danny) riding their bikes, running a screaming while playing tag, with their HUGE kool aid mustache. And my heart just aches :(
I sit here typing in tears as I have to reposition his head in his wheelchair as he "pauses" his breath while sleeping and his lips start to turn blue. REALITY SUCKS!! What I would give for him to have what was taken away....MY DREAMS. He is the sweetest thing EVER and what he's been through in his life so far, hell what's in store for him still in his life ..... it's just cruel !!
On a good note ~ Danny had a good PT session today. I got him in his stander and tilted him at more of an upright position to see how he would tolerate it and then PT Dan, when he was here, could look for any issues if Danny had any.
Danny listening to Elmo's the stander :)Danny having a conversation with Elmo :)They were having a real in depth conversation there for awhile, heehee. He is my IncrediBoy today.

Last weekend we were able to see what the head busts look like of the kids. Dan & I were having a local artist, Tim Brunn, do full body statues of the kids for the new house, but I am running out of room, heehee. So we decided to have him just do the kids heads....OMG are they AWESOME and so life like. Now that they are just the heads I can showcase both of them in my living room so I can look at them everyday. Tim, thank you so much for capturing "the moment" in both the kids...I will treasure them ALWAYS! I can't wait to see them finished and be able to show them off.

I still have a weird tingling in my legs and lower back when I pull my head forward... at the end of the month I have a physical so if it doesn't go away I'll let the doc know. I'm sure I tweeked something carrying lil man, sigh. My baby isn't a baby any more.

Well Lil man and I are going to go sit on the deck, cuddle, and finish the day on a GOOD note(yeah I'm going to have a cocktail, too). I LOVE my lil man so much :)

Our walk is on May 30th so ~ Please pledge your donations HERE and sponsor us in our walk for the Fox Valley Sibling Support Network fundraising walk. To read more on the FVSSN.

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1 comment:

WhitneyBooze said...

Hi Lori -
I 'stop by' all the time to check on you guys. I'm sorry for the pinful, and honest, feelings you have about Danny's disabilities. I hate going to Target, because I see lots of preschoolers climbing out of carts,and running around, and driving their mom nuts.... and I always leave crying. Suzy should be running around Target, and eating popcorn, and driving me nuts!! It's NOT FAIR for HER or for ME!! She would be the cutest little toddler in the world!!!!! and I would LOVE EVERY MINUTE OF IT!!!.........................sigh,
Hang in there ( you always do).

p.s. Your house loooks amazing.