Sunday, May 1, 2011

I'll Take Stream Of Consiousness For $100 Alex

If life would allow me, I would be on this blog every day.  It's been one heck of a couple of days.  Friday was Paxton's cardiology appointment.  The entire two hour drive there was a full blown anxiety attack. Not only was it monsooning out, but I was terrified of what news we might receive.

My BFF met me up there for support and she was waiting in the office for me calm as a cucumber while Pax and I blew in there 30 minutes late, disheveled and out of breath from lugging him across the parking garage and through the hospital because naturally I forgot the damn stroller . CC did what best friends do and calmed me just by her presence!  Love you ever infinity no take backs CC, thank you for always being there.  Looks like we might be walking the next leg of this journey around the same time.... Heaven help us. 



So Pax kept me entertained or maybe vice versa while we waited in between tests and for the doctor.  He thinks he's a big shot now that he walks and romped around all bad ass while I tried to remain calm.
  


Y'all don't understand, well some of you might, how the mere sight of the Sunshine Skyway Bridge (for my Facebook friends that's the bridge I always say I am going to jump off of when I am melting. PLEASE NOTE: I am not really going to jump off a bridge) it all comes back!



Remembering how I felt the very first time I saw that bridge 33 weeks pregnant in route to find out if my son was going to live or die.  The hundreds upon hundreds of times I have driven over that bridge while separated from my other two children, living in another city for months on end while my son healed.  I HATE St. Pete.  Like with a passion.  My glass is typically always half full and if I could get it right, I would refocus myself and say I love St. Pete for saving my son. And I do.  But that town holds far to many memories of sheer terror, loneliness and sadness. St. Pete will always be a part of my life and I have come to terms with that, in fact I am ok with that because it means Pax is still here with us. It does not mean though, that I have to like it.

Pax did what he does best and sucked it up buttercup, flirting with every.single.woman to grace his presence.  He showed them his new walking moves, batted those baby blues and side smiled as if he had practiced for years. The ooh's, ahh's, the he's so bigs, those eyes comments just kept on a comin! Pax drank it in like there was no tomorrow and I grinned from ear to ear that he was mine.  He screamed the entire time during his echo and we only got what we needed thanks to my acting like a complete idiot to entertain him.  I am not sure if he was laughing at what I was doing or the fact that he actually got me to be so ridiculous.
That echo he fought so hard against showed that he is in fact outgrowing his Glenn shunt.  This is why he is turning blue more and needing O support at times.  We are going to keep monitoring him closely. Our "goal" is to get him to next April, However we (we as in, his doctor) do not think in actuality that will happen. IF we can, it would be ideal to get him to April because October, which is when we are thinking he will be ready, is height of RSV and flu season.  We do not want to put him at anymore risk than open heart surgery itself, but if he can't hold out until April we go ahead with the surgery around his second birthday and pray he avoids catching anything.  If anyone thinks I am a germ freak now, watch the frig out!
So after two hours of testing and consults, the two of us wilted and tired, headed for home.  Lets just say the anxiety of this appointment was all to much for me.   Which in turn had my brain and mind straight up jacked.  To prove this I headed the wrong way on the interstate for about an hour.  To which I finally pulled over and cried my eyes out at some random gas station somewhere heading away from home. I was some kind of pissed at myself to which I proceeded to call my husband and go off like a sailor.  Screaming that I just wanted something to go my way for once. It was one of those toddler tantrums I talk of.  Were I not surrounded by strangers I may have even gotten on the ground and started kicking too.

In the end we made it home.  Quite quickly in fact at around ohhhh SIX pm that evening.  Ugh!  I was done and done. I bathed Pax, loved on my boys and drank what may be one of the strongest cocktails ever. Sometimes a girl just needs a little three olives to take the edge off.  I needed a shower, but hey that requires way more effort than I had, so I plopped myself into my chair and checked my emails.  As per usual God works in mysterious ways.  Another Dad that reads my blog sent me the sweetest, kindest email.   As I continued reading I felt the harshness of the day begin to fade.  He and his wife get it.  They understand when I am real on this blog. When I lay it all out there dirty, ugly, thrilling, happy and sad.  There are so many emotions that go along with this journey and from day one I have always wanted to be real about them.  Their blog too, is real.  They both write on it (which I think is beyond cool)  and when I read their entries I know I am not alone.  He wrote that the one thing we can give each other in this is the "comfort in knowing we are not alone in this".  It is true.  Just hearing that people read makes me feel like this is not in vein.  That sitting here at nearly 11 o clock at night is not in vein because
 "it's helpful to know that there are others who know something about it. I find your blog does this for me more than most, so thank you."  No longer did the day and it's jagged little digs hurt nearly as badly.  After all, had the day been peaches and cream then this journey wouldn't be real.  There would be nothing to write and a whole lot less to appreciate.  

It never ceases to amaze me when that gel to skin and probe pulls up my sons heart on a screen.  His half of a heart. His broken, single ventricle of a heart.  It works hard, that little heart and it does not give up.  That heart rests inside the happiest baby I know.  The kid is the epitome of happy!   He teaches me every day to quit my bitchin because if he can go through this life the way that he does then there is pretty much nothing for me to complain about.  

**********************

The email also said:
"we love the way you never lose sight of the severeity of HLHS yet embrace life and your incredible kid.  I hope you'll be given back the outlet of running soon. You talk about a toughness you have seen in yourself and I agree.  The determination to try and live a normal life, exercise, love your kids and go out on the boat with friends is an act of defiance of sorts. You aren't running from the scary reality, but also not letting it steal a disproportionate share beyond what it already has." 

I guess I never realized that defiance, but ultimately that is what it is.  I acknowledge this for what it is, but damn if it's going to bring us down.  I used to feel guilty for doing things for myself such as running or going out without the kids.   In fact, until I read that email, I felt guilty.  I no longer do.  He is right in that keeping some semblance of a normal life is healthy.  That amongst the oxygen tanks, boxes of medical supplies being delivered, syringes and pharmacy runs is life waiting to be snatched up.  I am snatching the crap out of this life people!  It is a gift.  I see that through Paxton and while there are days I do want to jump off the SSB because the fear and reality of it all seems to be to much. I also know that it always lessens,  that tomorrow brings a new day and with it a renewed sense of hope.  While Pax can never be "fixed"  I can choose to drown myself in it or pull myself up by my flip flops and carry on  ; ) 
Besides, one can only be sad for so long when the view is this good:



He will always know his Mama as the silly, crazy acting, big smile, belly laughing mama that I am and when I melt I will allow myself to step aside, throw a tantrum at the unfairness of it all and then return to what he needs me to be~HAPPY!

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Speaking of boating, Saturday was Paxton's very first time!  The other two boys have been boating since they were in carriers.  It's all they ever knew, but I have just been to terrified to take Pax. 
However,  in typical Paxton fashion he handled it like a trooper.  Shocking, I know.





His favorite thing to do was throw sand at his Mimi and her reaction made it all the more funny.

( Mimi getting her tan on)

(Pax laughing at Mimi)

We were on the water from 11 am to 4 pm. When Pax got tired we put him in his stroller, Nanny Max and I rocked him back and forth until he fell asleep all salty and sweaty.




In the end South Florida brought afternoon storms with it and we got pummeled with rain on the way home.  I, like any Mom would do, barricaded myself around the older two boys and Max took a beating in order to keep Pax covered in his stroller. Quite frankly it was the most comical scene ever.  Taking shotgun was my super type A step mom just getting beat up.  Me backwards hovering over my boys trying not to fall with each wave we hit.



 Nanny Max bringing up the rear and yes, she is always this funny!



We all shivered for like an hour afterward (except Pax who completely shielded in his stroller), but it was so much fun.  I asked the boys today if it rained on the boat yesterday and Masons response was "it was fa-reezing (whilst fake shivering) but you kept us covered in your pink jacket Mommy".  Kid is to smart for his own good.   I didn't even remember I had a jacket on, let alone the color. 

Today I had a migraine to top all migraines but hey same story different day right.  Gave myself two shots in the thigh, vom'd all morning and rallied around 3 pm.  Sunday fun-day,  erh or not.... Thank you Max for taking care of me! I <3 You!

I am headed out of town next week.  Will be the first time I travel alone, like ever.  Gonna go visit my girl Nikki in NC who just had her first baby boy, Jackson.  I am kind of excited to have me time.  Course I will surely be xanax'd out come D day because the anxiety of leaving my babies and flying will send me into a frenzy!  Truly though I am not a suicidal bridge jumping alcoholic druggie.  Lord if I haven't made myself out to be one in this post ; )  Guess like I always say: gotta keep my wits about me!


It is now nearing 11:30 here.  Tomorrow I will be kicking myself for staying up this late. I have a long list of honey do's for myself.  No rest for the weary though!

To all of my readers near and far, thank you for reaching out to me. It means more than you will ever know. It motivates me to press on in finishing Paxton's book and in continuing to write here on this blog.  I wonder where we will be next year at this time.... wonder where this journey is going to lead us.   I trust in it and y'all should too.  I have met some of the most amazing people through Paxton. Many that I will cherish forever. Big heart hugs to all the heart families "limping along with the Wests" (thank you Rolf, love that!)  I will continue to limp on for my son and for all of the others traveling this same path.  

That is a stream of consiousness post!  Now if you will excuse me I have a baby to go medicate and pull out of his crib onto my chest to smell, kiss and rock.

I will leave you with some more pictures from our boat day!


 (Nice hand placement there Mae!)







(mamas from west virginia, can you tell.... ; )



 (cross fit what...)




(My boys working their mojo with the ladies)





Night all
~J

2 comments:

Our Family of Four said...

My thoughts and prayers are with you and your family as always. Paxton is such a strong little boy and I know you are one of the bestest mommies out there. Please keep us updated on his progress. BTW, you look pretty dang good in that bikini. You go girl! ;)

Gretchen said...

How funny you mention Rolf... You HAVE to be talking about Rudy's dad! They live so close to us and I have followed their blog for a LONG time too!

Praying always for your family and gergeous Pax!

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