They're just toys...right???

I've been trying to get rid of some of Gage's toys for some time now. It's so hard though.
Every toy I pick up makes me sad.
I can remember the day we got EVERY SINGLE toy.
I can remember sitting there imaging him playing with it. I couldn't wait for the day.
I remember when we got the little basketball hoop for him...in my mind I saw him first sitting there playing with the balls...trying to figure out how to put them through the hoop. And then I saw him a bit bigger and standing next to daddy while they both played with it.
I remember getting the peek-a-blocks and how excited I was for him to discover them.
I couldn't wait for him to figure out that there was something INSIDE the blocks.
Again...I had it all mapped out in my mind.

Sadly it didn't quite happen that way.

The basketball hoop sat in the corner untouched for months and months.
The peek-a-blocks remained untouched in a box.

And those are just a couple of the toys.

For a long time I left all of Gage's toys spread throughout the house...I think in some strange way it made me feel more like a mommy. It made it easier to pretend things would be ok too.

Eventually I put them all away in a toy box in his room. Having them in a toy box made it easier to pretend as well.

In the beginning I would look at them every once in awhile and some days I'd drag out a couple and try playing with them with Gage...never went over very well.

It's been well over 4 years since I packed them all up into his toy box and sadly I know he will never play with them...I also know it's taking up alot of space that we could use for other things.

I know this.

But I just can't bring myself to get rid of them.
I can't do it.

Why not though???
They're just toys...right???

In a way yes...they are JUST toys...but they are also so much more than that.
They were my hopes for Gage.
My dreams unrealized.

What a week...and it's only TUESDAY...

This week started off with a bang.

Yesterday Gage managed to get himself wrapped up in his cords while he was feeding and as I trying to untangle him his mickey button popped out.

I don't change it...I never have. It makes me ill to even think about it so Kris has always done it. Yesterday it was just lil' man and me at home when it happened and I know that it has to be replaced in a timely matter so as not to close up.

I freaked out for about 10 seconds and then I grabbed the phone and called Kris so he could walk me through it. I've seen him do it enough times that I know how it's done but I also wanted to make sure I didn't miss a step.
Usually Gage is pretty calm when Kris changes it but I think he knew mommy was scared so he decided to kick and bang and move and try to sit up...didn't help at all.
I got it in but when I went to draw back on the syringe nothing was coming back up so I didn't get it in right.
I decided at that point that it was in enough that it wouldn't close up so I wrapped him in an ace bandage so it wouldn't pop out again and left it for Kris.

and then I cried. alot.

When Kris got home he was able to get it in properly but it took him a couple of tries...normally he can get it in right away so it wasn't just me.

I felt a tiny bit better.

Until today...when I went into his bedroom to get him up this morning there was something blocking the door preventing me from opening it up all the way...GAGE.
He somehow managed to kick his side rail open and HE FELL OUT OF BED.
My heart just about stopped.
I made sure he was ok...and he was and is. He actually seems a bit smug about it (that's my boy. lol).
He kicks his side rail all night long so I never really think twice when I hear loud banging from his room.

Anyhow...I gave him tons of hugs and asked him to please not scare mommy like that again.

and then I cried. alot

Seems to be the theme of the week....mommy is an emotional wreck.
Nice.

Is it Friday yet???

Long time no update...

and for that i apologize.

It's been a busy holiday season and things are finally getting back to "normal" so I figured I'd take a moment to update.
We saw the GI specialist last month and Gage's weight went down a bit (YAY) so now he's on a maintain feeding protocol. He was also given a medication called Reglan to help with the nightly vomiting. It seems to be helping somewhat. His Dr. is also referring us to an ENT to see about Botox in his salivary glands to help with choking. That scares me ALOT. And he wants us to see Rehab. Tech at Children's about botox in his legs to help with the tightening.
Man...this botox craze is getting a bit out of hand!!!
Baby botox??
Who woulda thought.
Maybe I can get a voucher to use in a couple years for myself.
HAHA

In other news...Santa was good to Gagey this year....The Gramma's were better but hey...either way he got SPOILED.
He deserves it though.

As for me...I came down with pneumonia on Christmas night. That was a shocker.
Luckily my parent's were able to take Gage for a few nights to prevent him from getting it and to also give me a chance to rest.
Pneumonia is the one thing we've always been scared to death of the kiddo getting.
It could be devastating for him...but so far he seems ok.
Thank god.

And on that note....I wish you all a Happy New Year.
May it be a BLESSED one for all of us.

p.s. I had a FABULOUS picture of Gage to put up but blogger is being a BRAT and not letting me.

One thankful mommy!!!!

I couldn't have asked for a better Thanksgiving. Gage started smiling up a storm around noon yesterday and didn't stop until close to 9pm.
Unheard of!!!
It was so nice to see.
He also had NO seizures at all yesterday and was awake the entire day. Again...unheard of.
I am the happiest, most thankful mom there is.

We had an amazing time at Kris' parents yesterday. There was 8 of us for dinner and Kris' mom did a GREAT job with the meal. Everything was wonderful.
All in all a fabulous day!!!!
Kris' dad took pictures of our grinning, goofy kiddo and as soon as I get them I'll post them for you all to see.
Hope you all had a great day too!!

Wills and other thoughts...

Tonight I was watching Jon and Kate plus 8...you know the couple with twins and sextuplets??? Anyhow...they had a guy come over and work on making a will with them and when they were talking to the guy about the people they chose to raise the kid's they said their reasoning was that they were the only people who would agree to take all 8 children without splitting them up. The mom then made a remark about them being the only ones crazy enough to do it.
It got me thinking...eventually Kris and I are going to need to work on a will but who would want to take our son??? To us he's wonderful and perfect and charming but does anyone else see that?? Is there anyone who sees past all the medicine and tubes and developmental delays and wheelchair and yada yada yada to see what an amazing child he is???
One of my greatest fears is Gage being left alone in this world and spending his life in a home. If there is anything I can do to prevent that I will...but how do you go about asking someone to take on a responsibility like this???
I know my parents and Kris' parents will do whatever they can but face it...they're all getting up there in age and truth be told we will probably be around longer than they will.
So how do we do this??? How do we "pick" someone without being an imposition????

In other news...Gage missed school today. He threw up his breakfast about 20 minutes before the bus was to come. Fun.
He also has the rest of the week off.
The good news is we can sleep in a bit longer than normal...the bad news is mommy is stuck in the house all week long while daddy is at work.
No bagels or latte's for me.
This is definitely one of the harder parts of being Gage's mom...i can't just pick up and go when I want.
Oh well...less than a week until he goes back and I can get my yummy bagel.
Can hardly wait.

A blog as THERAPY??

In the short time since I've created this little blog I've come to realize that I have been holding a hell of a lot inside. Anytime people would ask me how I deal with all of this I'd always give the answer of "I don't know any different" OR "I just do it...you deal with what you have" and blah blah blah. Seemed like good answers to give...right???
Good answers for who??
The people who asked them....or ME???
Seems maybe I did for me more than anyone else. You see...in giving answers like that I could convince myself that that was how I felt.

Buuuuut....here's the truth....alot of time this REALLY fucking sucks.
I mean...think about it...who would want this???
Noone.
And if you say to yourself that you would...then you're a bigger liar then I.
Obviously it's not all bad of course...few things in life are...but instead of glossing over the truth when people ask me things like how I do it maybe I should just be honest.

This blog has also made me realize that I spent FAR too much money on therapy and that this serves me better then they did...and it's FREE.
sweet.

Lord knows nothing else in my life is.

Purpose of this blog today...hmmmm...I suppose there really is none.
But hey...this is MY blog and it can be as deep and meaningful or not as I want it to be.
So there.

colds and other fun...

I know I said that I would finish Gage's story but to be honest I found it a bit too draining at the moment. I would start and stop and then start again....it's alot harder then it seems reliving all those days and moments that to be honest I DON'T want to relive. I love my child with all of my being but those days were some of the most painful, hard and guilt inducing days of my life. Does this mean I won't ever finish his story??
No way. I will finish it ONE day....just not today.

Anyhow...it seems that winter is upon us. Great.
I know most people aren't fans of winter because of the cold and snow and icky slush but for me and Kris winter brings out the worst for Gage. He seems to have a new cold every month or so and each one lasts just a bit longer and seems to take more and more out of him. He has a hard time bouncing back from each cold and I hold my breath each time that he will come back from it. He's already some colds this year...thankfully none too bad. I think if he was a healthy, "normal" child they may not have been colds at all but just brief bouts of the sniffles. His "brief" bout lasted almost 2 weeks and caused him to miss his Halloween party at the school and Trick or Treating with mommy and daddy. It's sad to think about all of the things he and us as a family miss out on...I try not to dwell on it too much but some days I can't help but think "how unfair."
I'm not one too sugar-coat things with Gagey...sometimes things absolutely suck. Do I love him any less on those days???
Absolutely not. If anything...I love him and appreciate him more because he just keeps on chugging along. Those days when I'm ready to throw in the towel I look at him and know that as hard as it is for Kris and I it has to be 10x as hard for lil' man and it helps to put things back into perspective.
But there are days when I am angry...so angry. Not at Gage of course...just at the world in general. It seems unfair and screwed up on those days that my child is sick and that there are parents out there that don't appreciate their happy, healthy children. But then I wonder if Gage was healthy would I be one of those parents?? Would I be someone who took their child's smile and laugh for granted???
I think to some extent all parents do because until you're in a situation like this you never know what you're missing.

This blog kind of took on a life of it's own today. I guess I had things on my mind that I didn't know about until I started typing. Someone sent me a message today about this blog and it being self healing in a way and I think she was absolutely right. It feels good to get these things out.