Thursday, December 22, 2011


8 years ago I wasn't prepared for .............. for what was about to happen to our family, the next day. I could have never been prepared for how devastated we would be and how fast our lives would spin in a tailspin. How can one be?? I was so clueless! Our family would NEVER be the same. I was prepared to bring my sweet baby boy into this world happy, healthy, SAFE!! IF only........ I had a crystal ball.
I stare at this picture more then I care to admit ~ This is the last picture I have with my baby boy healthy n safe and I can't even see him. But I know he's in there with everything working like it's suppose to... all his fingers n toes are wiggling, he's sucking his thumb, his brain is functioning, he's moving and kicking around in that small area (he's moving more in there then he ever will out in the BIG world). I was so excited and happy I couldn't wait to see my bundle of joy.
This is MY day that I set aside for myself! The day before Danny's birthday is My day to get it all out! To grieve for all the lost dreams that I had for my son and family. Everything that was taken away... in an instant it was ALL GONE. And once the damage was done there was NOTHING I could do to get it back or make it better! Today is the day where I can be ANGRY!! Angry that this happened, angry how it playing out, angry there is a world out there that my son will NEVER participate in, angry that he has to go through life in fear and pain, angry I will NEVER hear him say "I love you Mom"!! Angry that Avrianna will not have a "normal" relationship with her brother, angry that she has to worry about her brother more then she should!! Angry that I have to keep in the back of today the day? The day where I will see his baby blue eyes looking back at me for the last time. Angry that I have to keep this fear bottled up inside me EVERYDAY!! Today I pop the cork and let myself be sad. I GET to be SAD!!
Don't get me wrong I LOVE my son more then words can express and I would give anything for him. But I just wish he has what every parent dreams for their child .......... DREAMS! The dreams that he doesn't know exists :( I need to let it all out to be able to start a new, wipe the slate clean, a "new year's resolution in a way.
I did EVERYTHING right! So WHY!?! Where's the logic? Where's innocence? Where's the life I dreamed for my SON!!
This picture is the first I have of Danny, out in the Big Hard Cruel world! Fighting the ultimate fight~ one that no infant should ~ there was NOTHING I could do but hope n pray. This is Total helplessness! This Lil boy you see here will never be the same as he is forever broken. He was brought into this world and taken away injured and never fully repaired..... As you see the brain can NOT be fixed.
This picture has such raw emotions for me.............You can't even imagine! I am reaching out touching my precious Lil boy with only my finger tips wondering if that will be the last time he will ever feel my touch. Does he feel me? Does he know I'm there? Does he know I'm sorry? Sorry just doesn't seem to fit but that's all I could say, is sorry ~ Sorry my precious boy you may not make it through the night .........sorry you will never have what I wanted for you, sorry I will never know who you truly were. Amazing how all that can run through your mind in a matter of moments. How does one ever recover after something like this? Do they??
I wasn't able to hold him, talk to him, Kiss him, let him know Mommy loves him. All I was able to due was Just touch him with my finger tips....Will he continue to fight? Why would he, I'm sure he was scared, cold, and all he knows is pain. He isn't even breathing on his own, will he ever breathe? Then you sit and wait and wait it's so quiet, it's so alone, it's so helpless. I remember after getting the grim prognosis just crying out "OH my sweet boy".
After the dust settles you just want to scream WHAT THE HELL HAPPENED?!?! As it's goes by like a flash but will leave a lasting impression you just can't shake. I am forever scar'd. How terrible is that, on the day of your sons birth and even though he's here.....there is nothing nice to say? Traumatizing !!! Guilt!!! I too am broken :(
I look back at his 8 years of life and the Lil Man he's become. It's all at a very hard and painful cost, over n over n over again he's overcame diversity and medical prognosis'. We've fought the fight and we'll keep on fighting! I was trying to figure out how many times he has had surgeries (I should have kept better track of them) but I think this last one was 37. AMAZING!! What a road it's been and I'm grateful and thankful I am able to walk the road with him. I've learned so much from him and I've met some pretty amazing people along the way.


Tomorrow I will celebrate your birth, your life, your accomplishments, our New Dreams!
Danny ~ You ARE AMAZING Lil Man and my hero....I LOVE You and will ALWAYS be there for you Danny ~ Mommy
I know you know different.....I just wish you didn't have too You are my Inspiration!!

So now onto some updating ~
Danny's new wheels :0) We got it yesterday, just in time for his Birthday! He's only sat in it for a few minutes and I've had it in the house for less then a day, BUT this chair (so far) seems to be IT! All the little bells in whistles that Danny needs, but in a fun and functioning version. It's got everything plus it folds (somewhat) and is light weight! Not to mention the awesome color, heehe.
It's a Convaid Rodeo Tilt n recline :)
Thanks to Peter from Walking and Wheeling (Danny's Private PT) for setting us up with this sweet new ride :) I hope to put many miles on it
Yesterday Danny also got his staples taken out. The incision looks good. The area around it is alil angry as I believe he is reacting to the ointment we were putting on it. So we've changed to a cream in hopes that will help. He heals so well....I just wish his system would bounce back as fast. He continues to dance a fine line but we are able to control him at home. We still are making strides to recovery but it's 2 steps ahead and 1 back....but it's still forward :)
We did some labs on Danny at the clinic and all of them have chilled out and are reasonably back to "normal". We were able to discontinue the TPN and Danny has been tolerating his formula at full strength now we just have to work back up to his usual routines. That might take awhile but we will be working towards it each in every day.
I've been every busy working at the school with all the holiday festivities going on. Tomorrow is Avrianna's last day before winter break. I know she's excited about that as they are having alil pizza party and then no school for a week. Too bad we have no snow yet for the kids to play in over break :( It's going to be a brown Christmas over here. I am officially done with buying gifts and even the wrapping so let the Holidays BEGIN!! I do have to say I was sweating it a bit as I'm usually done long before this so I'm relieved to know I was able to finish WITH some time to spare.
Dan is busy building another laundry in Oshkosh on top of finishing his certification for Firefighting. He is hoping to have the laundry up and running near the beginning of February, but we'll have to see. My garages are FULL of laundry equipment, but don't worry I still have a parking stall inside :) And you guys say I'm the crazy one......I beg to differ, LOL. So he's not to disappointed that there is no snow from him to remove throughout the day.
I'm sad that our lifestyle just won't be fair for us to adopt. A few month back Dan and I had looked into the process again, but with the recent events around here that helped refresh me with previous events's just not fair to our family to add to our craziness. Nor even fair to a child that we would add to our family with all the hospitalizations that I'm pulled away for. It wouldn't be so difficult if we weren't inpatient so much but we are so unfortunately we are not going to pursue adoption now. See it as selfishness or selflessness as with this one I'm not so sure which way of the spectrum it lies. Our lifestyle isn't easy....but it's US!
Thanks for stopping by to check on us! You are my saving grace, my outlet. If it wasn't for you guys and the support I get I would be even more crazier then I already am, heehee
Merry Christmas & Happy Holiday

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