Sunday, March 4, 2012

Squeezing It In

We are down to two weeks and I am milking it. We stayed out way to late last night, did far to much yesterday and I have exhausted kids today. I know it was worth it though because I asked Austin at 6 ahem...o'clock this morning what his favorite part of yesterday was and he said " my new friends".  Mission accomplished.


We went to the Strawberry festival here in town and the boys lit up with excitement. So much so, they panicked at the red light because the car wasn't moving.  I forgot Paxton's shoes and refused to make them wait one more second because man I remember that excitement as a kid. The waiting, oh it was pure torture so I dropped off Daddy and the boys and went back, solo, to get my boys shoes.  We rode ferris wheels and carousels.  All of the things that made me feel young again right along with them.  Oh' yah and we won a fish. Actually we did not win  a fish, the lady felt bad for us and gave us a fish.  We named him "Nemo" and he even went on the ferris wheel with us which was clearly a bad idea because by the time we got home from our cookout last night we had a lost soldier.  Motion sickness from being handled by 3 boys was his demise I presume.


that's papaw west right thar ; )



as you can see, that went over like a lead balloon

And that cookout I mentioned, awesomeness.  My boys were in heaven.  They ran around for hours and I do mean hours with children they had never met before and no one judged and they included everyone and my heart was happy.  Paxton went until he was breathing so hard he scared said friends and she ran off with him to get water .  He likes to scare people. Especially people that haven't been around him when he's all balls to the wall trying to be five years old at two with half of a heart.  Someone said last night at the very end when they found out about Paxton's heart that Dave and I handled it like nothing was even going on, she had no idea until the end.  I thought that was pretty cool, because HLHS does define us right now and  for those that are around us a lot more they see and know that, but those who are just meeting us, they get a virgin view if you will.  We walked up to that cookout like any other couple with three little boys. No one knew any better.  
What I realized last weekend and this, is the burden I am subconsciously carrying around.  I don't know why I feel it's subconscious either because its quite apparent whats impending, but I try to just act like everything is fine and dandy and the truth is it's not. I cry every other day.  I snap on a daily basis, especially to my ever so patient husband.  I am tired.  I just want/need to be on the other side of this last massive hurdle for awhile and know that he is going to be ok.  I love how I think I know what I need and how "once I have a date for surgery I will be fine".  No, I am sick to my stomach just typing this.  Now it's just a massive countdown.  I smother my boys, all three of them, because I am leaving two behind and the other is having his chest cut open and  having a machine take over for him while that is happening.   
I mean that's the reality of it isn't it...  I remember the surgeon saying at our last visit "there is always the risk for the same complications he has had the prior two surgeries such as bleeding, stroke..." and after that I blurred him out. I have done that each and every time. I can't listen. I just turned and started talking to Paxton.  You know why, because I have seen the risk become a reality just beds away from Paxton so while the risk is small, it is a reality and I can't negate that.  I look at my amazing little boy and try to fathom him anything other than what he is right now and it paralyzes me.   So no, I am not ok. That is my baby boy, my life, MY heart and it is killing me. He knows too. He knows something is up. He clings to me and he isn't typically a clingy boy.  He insists I lay with him now until he is completely asleep when he used to be able to put himself to sleep.  He taps his pillow and says "way down mommy"  and you bet your bottom dollar I crawl right in there on my side (and I do have a side) and hold him until he is fast asleep. He also absolutely has to have his hand wrapped around my finger as if he were a newborn again. I swear it's like he remembers being in an isolette when all he could do was hold my finger.  God, if I could make it tomorrow I would, that way I could go into auto pilot and the numbness would take over for the time being. Oh' to be numb for just a little bit. I cried tonight. Like really, really cried.  It was what I like to call a " scared Mommy meltdown". I couldn't breathe, frozen in panic. Fully aware that I could come out on either side of this.  Fully aware that others have come out on the other side of this and I wept in my husbands arms for those who have had to watch that sand slowly fall through their hands.  Oh'  I know people, think positive. I get all of that, but I also cannot disregard those out there that have had to walk to the other side.  The side that I stand just next door to every time my son goes under anesthesia and were it me that had to make that step over, I wouldn't want people to shut me out because of it.  I am kind of  a hot mess right now and not "hot" in a good, sexy, milf kind of way oh' NO siree.  Just the opposite in fact, but hey you know what, my kids love me and oh my if that isn't enough.  So today was a really bad day.  "It happens..."

Tomorrow,  I will squeeze some more in. I will roll that toothpaste tube up some more to get every last bit  out in an effort to spend every last minute with my boys because as far away as it seems, ten days will be over in the blink of an eye and I will be tucking them in one last time before heading to St. Pete for the third go round at this.  THIRD.  Seriously.

"Tomorrow is March 5th.  10 days to go and what happens between now and then is what God has planned. Keep the faith and know that what happens is already planned and you cannot control it.  Take the next 10 days and stay home. No interaction with the outside world. Love on those boys and be happy for the time we have with our kids is so precious. Love you. Mean it!"

P-E-R-F-E-C-T-L-Y said.  I have zero control at this point. In fact,  I never really have.  I have to believe in the depths of my soul God did not bring my boy this far to stop him now.  Oh has he beaten all the odds!  Paxton David West you are a spit fire. You came out wailing and you haven't stopped yet.  Just two weeks ago after your cath, you  came out of anesthesia so wild they had to gork you with another drug to calm you down.  Nothing holds you back, not even your half of a heart.  I never mean to doubt you sweet boy.  I doubt life and how incredibly cruel and unfair it can be at times.  I don't want you to hurt or suffer for one iota of a second and it's going to kill me to stand by and see that. I know you have peeps though.  Really, really good ones, migh-ty pretty ones too that you have won over in that hospital one by one and they will take care of you.  This I know.

Speaking of squeezing it in. I have this....



...beside me in my bed as I type this. I am going to go snuggle the hell out of him while there is still just a little bit left to squeeze in. Ya know before he is all grown up and moving out . On that note I leave you all with this little message I received from a friend recently. It's quite fitting I think even on my "weakest dayyyy..."


Love and hugs~
J

1 comment:

The Farmers said...

You are amazing!!! Our thoughts and prayers are with you all right now. We cannot wait to meet all of you. Hugs and Kisses

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