Monday, April 30, 2012

Moments and Music

I can be having the most unimportant day driving along and a song will come on and suddenly I am transformed to another time... Moments past, present and future.  Music, lyrics, rhythms and the beats all move me from the ground up.  As you know I am not much of a tv girl, but music...now that I love.  I listen to it all I guess. I love me some 80's, rap, soft rock and most of all country.  My pandora is forever set to a steady stream of country. All of which has the potential to have me in a heap of tears at any given moment.  Country and I are like fire and gasoline, but that doesn't stop me from losing myself in a song that takes me wherever I feel the need to go in that moment.  Songs for me are like streams of an old 8mm movie, each one, each genre, taking me instantly back to wherever I was at that time in my life.  Goo Goo Dolls...oh dear sweet high school when I thought I knew what love was; when the world was my oyster... To this day I can still meet up with my Dads cross country team for a run and simply running the same loop I did in high school has my mind wandering that old beaten path of young love, when I worked two jobs to stay afloat, when I had not one tiny inkling that I would be where I am today.  Not one tiny inkling where that beaten path would take me.  Crazy sh*% peeps!

So I dreamt I was pregnant last night. Good thing that can't happen since I have an IUD, but man alive did it stir me up.  Stirred up all of the things I missed. It has been nearly 4 years since I have had a new baby to hold.  I missed that with Paxton.  There was so much more surrounding his birth and homecoming that I never got to enjoy it like we all imagine.  The last thing we need is a baby, regardless of what the hubs says, but man to smell that new baby smell again and spend early mornings snuggled in a warm bed with a wee one would be heaven.  It feels like ions since life like that was present.  Bittersweet yet again. So much happened when Paxton was born, so much took place, so much came and so much went.  It's mind blowing.  I sit here listening to Lady A, who happens to be one of my all time favorites E.V.E.R. and I am dumbfounded at my minds ability to still constantly swirl over the last two and a half years of my life. Then I remind myself that we have just seen the light at the end of this 2 1/2 year tunnel and the swirling will continue for a bit.  I think of last year at this time and sometimes can't breathe.  But life does that. Drops your ass in this moment that tests you beyond anything you could ever imagine and leaves you struggling to keep your head above water.  It hurts. So hard and so good. As I have said before, there would be no beauty in the struggle without those nails dragging the cement of life trying to hold on moments.  They leave you reeling no doubt, but they also leave you superheroish.  Suddenly there comes a day when you realize in the words of Sara Evans that months have gone by and you haven't cried.  That you've got this no matter how hard it is, was or will be.  I don't know how this journey will play out. I know its dropped me to my knees, leaves me sitting at my desk right now with the rain pouring outside the window behind me, chin up, proud, knowing I kept my head above that water.  I am still paddling, you know, working my way through the tangle of life. Forever a work in progress eh... What I know beyond a shadow of a doubt is that each hurdle jumped is another lesson gained and I am worth a crap load of knowledge today.  So I kinda find the beauty in music and it's ability to remind me of that... you know~ where I have been.  It rips the scabs off those wounds and makes them fresh again for those 6 minutes or it glosses over some of the best moments in my life putting me right back in the thick of it for just a short time. Like a dream can do. Or closing your eyes in the dead of night.

Paxton got the all clear on Friday and I have cleary spent every moment since in some sort of nostalgic trance.  It's over.  For now, it's over.  Head above water.  Nubs for nails. Movie reel flapping.

On to the next... Please God let there be some smooth sailing for awhile~






































Love and hugs~
j

Thursday, April 26, 2012

Balance...


To say that I have been clingy lately would be an understatement. There is no rhyme or reason to it. Pax and I have been home for a good amount of time now, but I am smothering my boys in some serious love.  Every time I leave the house I just want to turn right back around.  Home is our haven.  It's safe and for now it houses 3 healthy little boys and maybe in my mind going out into the world might change that.  Maybe, as I know I have previously written, the dust has begun to settle.  Only this time we aren't talking dust from one surgery or a heart catheterization. We are talking dust from nearly 3 solid years of living in fear and preparing for whatever impending procedure was next. We are talking approximately 10 heart caths, 3 open heart surgeries, 4 feeding tube surgeries, 2 emergency ambulance rides two hours North, numerous hospitalizations from UTI's or viruses caught, thousands (literally) of pokes and prods to my boy, hundreds of echos, ekg's and doctors visits. But mostly, nearly 3 years of living in limbo. Watching his color, freaking out if he gets a cold, stalking people to wash their hands, checking profusion, running him outside when he got to cold and started shunting, not sleeping for constant fear I would not find him alive in the morning, preparing to hand him over for another surgery. Watching him grow into this amazing little boy and worrying how long I would have him. I still worry, every day actually how long I will have him.  I cry when I tuck him in at night, still.  I stroke his hair as if it were my last time. I still savor every. last. drop of him because in all actuality he still has half of a heart. The surgeries did not fix him, they bought us time, they are palliative.  I still worry constantly, but the dust is beginning to settle... I am allowing it to millimeter by millimeter. I still live in the mindset that if I let it all go, the bottom will fall out from under us. So I continue the battle of letting go and holding on. I always will I presume.  I still battle leaving him.  Battle being gone for to long. Not being there when he calls out for me.  I never want him to not have me there when he needs me, if he has learned anything over his young life, it is that I am there.... through it all. So allowing him to learn to be a big boy is hard for me. We have begun to wean the paci and are starting to let/force him put himself to sleep on his own and it is pure torture.  "Pwease Mommy, pwease!", he screams through the tears and off I go. I crawl into bed with him whispering "Mommy is here, Mommy is here!" I don't know who I am saying it for more, him or me, but nonetheless I say it. And when he does fall asleep, it is never long before I find him like this in the doorway to our room, to which he is immediately brought into our bed.  Who can say no to that...




























My heart, my whole heart, is so swollen with love over these boys.  It is such a gift that I now understand how astoundingly fragile life is, but I am still learning to balance that gift, for it tends to make me cling.  Hard.





























































































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I let him live though.  I let him play in the rain on his scooter, even though inside I worry he will get to cold or sick.  I let him wrestle gently with his brothers even though I want to scoop him up and scold my husband for being referee.  I let him play on playgrounds and run a bit without my begging him to slow down for fear he will fall on that fragile chest of his.  He is a typical almost 3 year old, getting into trouble, being sassy, throwing food, testing the waters, screaming when he doesn't get his way, going to time out for spitting water everywhere~just for fun.  He tests me and the fact that he is able to test me makes my heart soar, because that means he is doing well.

that's his I didn't do it face...note the water all over his shirt...






































Summer is rolling up on us quite quickly and I am loosening the reigns. Preparing myself to let these 3 amazing boys of mine grow up. I am already having panic attacks about Austin going to kindergarten. I want to keep him at his preschool forever where they treat him/us like family and watch out for my boys. I don't want to send him into the big bad world just yet.  I lay in bed at night and remind myself to breathe because I don't know when my first born became an almost 6 year old.


Just as I do with Pax, I have to let him live. I have to teach him how to live in this big, big world.  It is my greatest hope that I send them into it with a sense of kindness and compassion, yet be able to stand strong enough to never let anyone take advantage of them.  Those two also play a delicate balance.
Tis' life though isn't it... Finding a balance in it all.  As a Mother, that is without a doubt, the hardest work in progress I have ever known.  The letting go and holding on. I will be on my death bed still trying to figure that one out.
In the interim though I am beginning to enjoy our sense of normalcy.  I am letting it filter in, brew for a bit and letting it go.  We are making memories. Silly little memories that we will talk about years from now. Like Austin telling me he wanted to marry me like Daddy did or waking up in the wee hours surrounded by three little boys, all of whom snuck into my bed like preying panthers.





































Mason asking me if tomorrow was our date night because one day of every weekend is date night with my boys in this house.  Memories.  The words, that make up our little novel.  Ahh but it is SO big to me. One of those thick, can't put down, stay up way to late novels.








































That cup..... it has runneth over....

Love and hugs~
j

Monday, April 16, 2012

Thank You's To Paxtons Warriors

Life is seemingly back to normal.  I spent last week running errands, taking the children to the various places they needed to be, cooked dinner and found myself just above the pile of ever mounting laundry that is a constant in this house.  To some this may be boring, to me, it is perfection.  Others are just beginning this journey and some are in the thick of it as I write this. I am not going to lie, I don't want to be there again.  I want to be here at home going to teacher conferences this week and chasing my kids around the house until they finally get their grubby boy selves in the shower. Why is it that boys despise getting clean anyway....











































































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My point is that it doesn't have to be huge to be amazing.  One of the best lessons I have learned living the hospital life.  A lesson I am reminded of daily as I follow my other special needs families still fighting the fight.  My heart aches for them in the midst of their daily battles because I know how deeply they want to be where I am at this moment. It is reading their posts and their updates that often make me wonder why it has to be hard for so many, but easy isn't awesome now is it.  Easy doesn't teach us to grow and blossom in ways we never knew we could. Easy doesn't teach us in two years what some never learn in a lifetime. If you take nothing from this lil ole' blog of mine, it is that!

Which leads me to this post I have been mulling over since the pictures and prayers started coming in.  Today tested me.  Today we woke up to find out that our company had been broken into over the weekend and all of our equipment had been stolen. The company my husband worked his ass off to build and keep alive in this ever competitive market.  It was not just us, apparently these people were going big and got 12 other companies as well.  I was angry and bitter and could only think how shi*%y people can be. I wondered if these so called people had known what this family had just been through would it have changed things, but I also know people like that don't care either.  Just as most people are doing in these times, we are just trying to get ahead. To put away for college, pay off medical debt up to our ears, save to build a pool for our boys to frolick in all Summer.  (and while I know a pool is a luxury, it is also a luxury that would be well used in a house with a little boy who tires easily and can't be out and about but for small chunks of time. It would allow the older two boys to continue to play and burn off all their energy while Paxton rests, just in case anyone wanted to lecture me ;)  Today all of that was put on hold and I wanted a moment with those people that robbed my husbands hard work and the food out of our families mouths.  I found myself for just a moment being angry at people, like really angry.  Then I walked into the living room and saw my boy playing with his cars and I was reminded how last month at this time he was one day post op. I remembered the people that we're pounding on God's door for our family.  I remembered those picking up my kids, feeding them, bringing them home, picking up groceries for us. I remembered the people, some we don't even know making meals for our family.  Those wearing Praying for Paxton bracelets.  I remembered the GOOD that is still left in the world.  Those bad people... while they may put us back for quite some time, they will not break us.  So we will still have medical bills and we won't be getting our pool, but we have Paxton and friends surrounding us in droves and that is more than they will ever have.

I found it quite coincidental that as this thank you post was on my To Do list for today that we woke up and found out what we did.  It made the gratefulness that much stronger. It made those two words, thank you, not really seem like enough, then again I have said that all along.  There aren't words to express the gratitude that fills your heart when people drop everything to help when your family is at stake.  But thank you will have to do, for as viced as I am with words, I have none powerful enough to express all that we felt in those weeks leading up to and during Paxton's surgery.






























































































It's breathtaking to me.  How one little boy can change so many. The letters, emails, texts and comments I received not only reiterated this for me, but kept me afloat in the weakest times. Prior to Paxton, I did not know how to ask for help, to allow people in, to trust in the journey.  Today I have allowed myself to  become less sheltered and to let those amazing people in my life to remind me that I can do this when I doubt myself, to take care of my family when it needs some TLC and to love on my boys when I can't be there to do so.

So thank you all.  I could list people all day long, but for fear of forgetting someone I am just going to leave it with~ you know who you are.

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I received a gift the other day from an old prayer warrior and new friend.  What she wrote meant so very much to me as we end this journey and hopefully head into a brand new one....






































I have an ending now.... Let's move on to the next chapter....

Love and hugs~
J

Wednesday, April 11, 2012

I think it's time for a stream of consciousness post....

So we are closing in on about 4 months since I have been able to get my "hurr did" and let me tell you how nappy my roots we're getting.  Point of my story being that I came home with gorgeous, can only be that gorgeous unless a stylist does them locks today and my boys start to full blown panic about "where I was going and would I tuck them in?", it didn't occur to me until later as to why.  My hair was down and pretty and not wrapped up in a messy bun on the top of my head, therefore I had to have been heading out. Which led me to think that maybe I should try to pull myself together a bit more once in awhile.







































I'm sexy and I know it :0

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Then I remembered where I spent my day yesterday and that I would no sooner want to "pull myself together" if someone offered me money.  I spent the majority of it in a car heading back to.... yep you guessed it~ All Children's Hospital.  Paxton's incision, that I mentioned in the last post, got exceedingly worse.  Like kinda really bad looking.  So I packed our bags, fully prepared to be admitted. I can say it looked admittedworthy too.






































I spent the night before preparing myself to not come home, to sleep on that ole' vinyl couch, to watch my son get poked some more and to be separated from my older two babies again.






































I drove there, Pax sound asleep in the backseat, contemplating the world.  Contemplating this journey I was unwillingly handed, but would graciously accept a million times over to have the little boy that I do today.






































Have I mentioned how massive this kids mouth is... seriously a tennis ball could fit in there.  Apple doesn't fall far I suppose... Dave and I like to call this pic the "peace out ACH shot"!  Priceless!!!!
Clearly we were not admitted. I have now decided that if I fully prepare and pack a bunch of sh*%, that I can sort of jinx the situation and we would not have to stay.  Alas, that was the case this time.  Paxton had a reaction to the suture in his incision. Because he was afebrile and had no drainage they agreed to send us home on oral antibiotics instead of admitting for iv ones.  I wanted to jump into the cardiologist and surgical pa's arms screaming thank you thank you!!! I refrained. Just this once ;)


That's my boy~ LEAVING!!!!


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What I didn't prepare myself for in all that preparation I did was that I would walk back into ACH and see this adorable pregnant woman with her husband on several different occasions. They had welcome packets in their arms (as if there is any sort of welcome happening at a children's hospital)  and coincidentally they checked in right at the cardiologists office Pax and I were waiting to be seen at.  A few moments later one of the nurses came out to give them "the tour".  They were smiling and making small talk. I knew what they were feeling inside.  I knew the smiles were fake and I knew that once they made their way 3 stories higher to the CVICU that she would more than likely wind up in tears just as I did on my tour.  They were just beginning this journey.  They are spending every night on bended knee until their baby arrives.  I wondered if it was their first.  I wondered what the defect was.  I wanted to talk to them.  Me, the once ultra shy girl wanted to sit down and talk for hours with them.  I  wanted to have the book I long to find time to write in my arms to hand them.  For her to go home and read~mother to mother~ about the road that is being laid out for them.  Not that our journey can make theirs easier, but at the very least they might be able to read ours and have some sliver of insight on what lies ahead. What I would have given 2 1/2 years ago for that....

Speaking of wanting to talk to that presh couple, I am still amazed at how much I have evolved over the years.  Part of it is due to my husband and his ability to talk to the lamp post beside him. Truly, the guy makes friends with e.v.e.r.y.one.  A trait I was always enviable of because 5 years ago I would rather slit my wrists than try to make small talk with someone I don't know.  Then Pax came along and I had to learn to make serious small talk for hours with nurses and other hospital parents I didn't know.  It was a good life lesson because I would have to learn to do that in the coming years~ a lot! I had to find my  voice and be an advocate for my son.  While I am still learning to do that for sure, I have come so, so far! Just another thing I can add to Paxton's list of things that boy has taught me.  Who knew a newborn baby would teach me more than I had ever learned the 30 years prior....

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And that is exactly what I told my hairdresser Jen today.  A little baby has taught me more in two years than a lifetime without him ever would.  Speaking of a baby teaching people things.... stay tuned because Paxton West is making headlines ; )






















Love and hugs~
J

big, BIG heart hugs out to Zoey and her family as they embark on their Fontan journey two days from now.  I know the knots that have risen as the hours wind closer. I am thinking of you all daily!

Sunday, April 8, 2012

Easter 2012



The Easter bunny came and went. He "left trails in our house!"  





























Trails that led to buckets of video games and bubbles for my baby boy.

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We hunted eggs several times and Pax found the golden egg both hunts!  He got a toys r us gift card and "$5000 dollars" according to Mason. It was in actuality, only $5, but I love the enthusiasm and a guy can dream right. ; )










































































And if anything fills me up, it's seeing their excitement.  The Easter bunny didn't put candy in the eggs, but rather the ever so popular squinkies.  They are perfect for my ocd, hoarding boys.  


















































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In Fontan, HLHS, Mommy never stops worrying news. Paxtons incision is all of a sudden very red and swollen.  I am terrified its getting infected and we are going to wind up right where we just came from. Quite frankly, if I didn't have nurse peeps to calm my Mommy heart, we would have probably spent Easter in the ACH emergency room.  But, there are i phones that send pictures and friends I have made along the way that ground me when I freak my freak.  Thank you, you know who you are.  Prayers that whatever this is at this point, gets better in the next day or two on its own.  My hope is that he bumped into something and pissed off that ultra fragile area at the moment.  I want him home, I don't want him poked or prodded anymore. I want him to know normal again because all his little mind knows right now is that the sight of a syringe makes him run off, the drive on I-75 has him pleading "no hospital, no hospital" and you cannot so much as even lift his shirt an inch before he then freaks his freak in an attempt to hide his boo boo's from any and all prying eyes.  Bless his heart, literally. Pun intended.

He loves him some Mommy right now. Won't let me out of his sight. Won't let anyone change his diaper, clothes or move him without screaming for me.  We have bonded, the two of us, in ways I never wish we had to, but ways that formed a trust and love beyond measure.






























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Happy Easter dear friends! I hope that you were able to enjoy each other. I know we did.   Separation always looming over our heads tends to make every moment all the more precious.



























That's good, good stuff right there....


Love and hugs~
J

Wednesday, April 4, 2012

Silly Stuff...

Last week when we were admitted for 24 hours, I had one child man down with the flu.  Well now, I have one all better and it has moved on to the next.  So far, fingers crossed, knock on wood, Paxton has avoided it.  The funny thing I keep reminding my husband, you know the husband who is more than ready to add "just one more" to the brood, that if we had another one there would be even less time for him.  Poor dude has slept in his 5 year olds bed all week. Every ounce of energy I have,  has been running back and forth between the quarantined child in my room to the healthy ones trashing the joint. I keep saying there just isn't enough of me to go around, but he seems to know that this too shall pass. So, he continues to push for another baby and I continue to remind him of all that we have just been through and to go get his head checked. Speaking of having another baby (which I said I would only do if my Nanny Max comes back so he better go talk to the people that be in England) wait...speaking of NOT having another baby, the awesome hubs did a little wheeling and dealing and got me a personal trainer (at my request, not his implications and no we are not loaded, he happens to be hubs friend and that's where bartering comes in ;) to make sure I am able to get my workouts in. Those have all but gone to the wayside in the last year, with life, family and impending surgery taking over. Even just getting out of the house for an hour is next to impossible these days without at least one child in tow. I cannot put Pax in child care at a gym and I refuse to be gone in the evenings for bedtimes, so first thing in the mornings I get my a*% kicked.  He does boxing. Heart moms take notes: boxing/kickboxing is incredibly therapeutic!  I punch like I never knew I could. All those days in the hospital, all that pent up fear and tension comes out when I put those gloves on and use them.  Working out isn't all about the perfect body (although lets be real, it is a fab benefit) it is so, so much more about getting rid of stress for me.  My Dad taught me that a long time ago and I am convinced that is why he runs with such a fervent dedication to this day.  So while I gimp around like an 70 year old woman from the soreness, I am also carrying a much lighter load these days and let me tell you how incredible it feels.


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Pax continues to thrive here at home. He has returned to his normal, incredibly spoiled self. He is a typical two year old. Correction: he is a typical two year old who has spent a great part of his life in hospitals and doctors offices and therefore learned very early on, that he kinda gets what he wants.  Which is now leading to pretty impressive tantrums here at home when he learns "no it is not ok to pour ice all over the couch like you did in the hospital just to entertain yourself".  He no likey!

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Today we had a recheck in St. Pete with that second opinion doctor I talked about in my previous post. Let me tell you all the ways that we liked him. He silenced any fears I was harboring and reassured me in every area I was doubting. He was incredibly happy with how Paxton looks and I, once again, glowed with Mommy pride. We talked about how Paxton has quite frankly rocked this entire HLHS journey.  There are so many things that could have happened along the way. So many that I was warned about and prepared for and 99% of them never happened ( and I know I used and 4 times in a single sentence, but I don't care ;)
As I walked to the bathroom today while waiting for said doctor to see us, Pax and I turned the corner and saw a little boy who was clearly at the cardiology office for his heart, but was also bald from the chemo he had been receiving. He had tubes and wires coming out of several spots and I was once again reminded of how incredibly blessed we are.  I was all to conscious in that moment how this journey could have turned out.  We drove home and Paxton is out of the woods. We played silly string in the backyard tonight and I smiled so deep that we were all home, flu or otherwise, and playing in the backyard at dusk when so many other dusks were spent gazing out the window of a hospital room.  Oh' life is good. Eat it up good! 

this is called~ having big brothers!






































































































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

So I wanted to talk about something that's been on my mind lately. It started before Paxton's surgery and has been brewing for about a month now.  Just as we were preparing to leave and endure round three,  I seemed to be getting a lot of comments from friends telling me how their child was going through this or that.  They would then say to me, "here your son is about to have open heart surgery and my son/daughter is just having this or this done, I should really learn to suck it up."
Man do I dislike those comments.  I remember when Austin was born, a mere mosquito bite would send me over the edge. I would avoid giving anything, even Tylenol, at all costs. Now I give Triamenic if it's needed because I have seen a newborn on more hard core drugs than anyone can wrap their head around and guess what...he's fine and he's freaking smart.  Now don't go run out, drug up your kids and then come back to sue me, I am just saying I remember before. I still have before~two of them you know. I remember Austin getting tubes in his ears and I needed a paper bag to function.  Of course, open heart surgery is going to trump most everything, but it's not about trumping and here's what I texted my one friend: "this isn't about sucking anything up.  It's just us Mommies worried about our babies, doing the best the best we know how." Isn't that what it really is... There is no comparing because if that were the case I could sit here and say what the hell have I been worried about all of this time when not only could Paxton have HLHS, but he could have cancer on top of that, like the little boy I saw in the hallway today.  No.  We are each battling the ups and downs of parenthood however big or insignificant they may be.  These children are our hearts walking around in little human forms and skinning a knee stops my heart to this day, always has, always will.  

We wouldn't be Mommy's if all of the things in between healthy and hospitalized didn't send us helicoptering over them.  So please to all of my peeps that read this, know that I most certainly never expect any "sucking up", all I want is for you to know that I get it. I get it in a way I never knew I would. The day my first baby boy entered the world changed it all. 

I digress...

I am going to say night night for now and go watch some Mad Men ( my new favorite show, thank you Jaime) I could so live in that era and if you need some mindless mojo, itunes that sh*%.  Even though I am not a big tv fan, it has been lovely to be able to check out every once in awhile. 


Night all~ and watch yo' backs ; )






































Love and hugs~
j

ps heart hugs out to little Zoey who is preparing for her Fontan and having her heart cath this Friday.  Pax sends you knuckles and says you got this girl!

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