Tuesday, February 22, 2011

Holy Stream Of Consiousness

This post has been a long time coming and I apologize.  My life is crazy.  I stop a lot and wonder how it got like this.  When did the pace pick up to lightening speed.  Where evenings end with me sitting on the couch "whewing!" the day away.  In all honesty I thrive on it I suppose, but I do wish there were more hours in the day. Time to stop for the things I love.  Like writing, that is easily put to the wayside when other things wait in line.
Paxton is home. We have been home for nearly two weeks now.  In that time I have been to a 13 month old HLHS babies funeral, spent many a nights crying over the unfairness of it all, run a race that led to a personal record.

 (my cousin amy, my sissy, me, my girl charity and kimmie)

I have spent time with my babies in the backyard and gotten a "hypoallergenic/dander free" puppy to accomodate Paxtons allergies yet allows the older two the dog they so desperately beg for.




Oh' life you are wild.  You are crazy.  But I love you.  I am kind of like life~wild and crazy I've been told.  I just keep going. Don't stop cause if you stop you'll have to think. So I drive here and there, run to and fro, plan this and that all to keep the pace that I sit and wonder about.  
I need to write thank you cards, need to pay bills, need to make appointments need need need.
So I stopped today. Stopped to breathe and reach out to my peeps.  To let you all know that my baby boy is home.  He is a fighter.  He said hell to the no about spending the weekend in a hospital so they released us and we came home to brothers and hung out at the park while other parents stared at the rash all over his body as if he were some contagious freak and my mama bear instinct eyed them down like a hawk.  No it's not contagious folks, he has half a heart and can barely fight the common cold so F you!
Yah sometimes I get a little touchy about it.  I get defensive. He's had enough to fight without others passing judgement on a 16 month old baby.





I want to shout to the world, have you no idea what's important!  Have you no idea how precious this life is.  It should be a rule that everybody spend time in the ICU at a Children's hospital.  Every person to grace this Earth should be required to endure that because this world would be ever so much kinder, calmer, grateful.

I have a race this weekend. I am psyched. The pavement is the only place I feel whole. Where I am doing good and right.  My girl who fights this same fight along side me will be there running it with me. This is our outlet where no judgement is passed. No expectations held. We just rock it.  We leave it in the dust behind us because we are ONE BAD MOTHER RUNNERS and if all we have is each other and our babies in the end then well, we did one thing right.

(thanks C for my car magnet, i am in love with it!)

Yah it's a crappy post. Don't have a lot of inspiration to give today. Only that I wouldn't change it for the world.  There are highs and lows to this just as with anything else in life. Sometimes word vomit helps.  Sometimes it doesn't. Today I am giving it a shot. Taking this weight on my body and throwing it onto the keys of this computer hoping for some release. Sweet release!!!

And now it's time to go walk this new puppy (cause really what I needed in life was a damn puppy, but if him sleeping in bed beside me doesn't tell you that I already love him I don't know what does) get the car cleaned, pick up the boys, haircuts, lunch, naps, somewhere in there workout, play outside, dinner baths, bed and a big fat "whew!" at the end of it all.
And when I am old and gray I will still be doing the same thing. I know without a doubt I will still live life at lightening speed.  It's how I am. It's in my blood (thanks Dad ;)


Some days I wish for a slower pace, but mostly I just wish for peace in my heart.  Peace so that I am able to allow myself slower days where thinking isn't avoided.  Where memories can filter in and out without hurt or sadness or fear surrounding them.  I'll get there.  One day at a time.  


Love
~J

Wednesday, February 9, 2011

Heavy heavy heart

I learned last night that another HLHS baby has gained his wings.  Kian Moss fought for every day that he was present on this earth. When I pull up his blog and see that radiant smile, I simply cannot believe he is not here anymore.  I spent a great deal of yesterday vacillating between the unfairness of it all, feeling guilty and feeling the pain, but not actually knowing one ounce of it.  It is my biggest fear no doubt and as I sat rocking my own hlhs son in the hospital rocking chair (yes we are in the hospital) I felt like I couldn't breathe. Couldn't hold him enough. Smell him enough. Squeeze him enough.
This entire unit is full. Full of sick cardiac babies and yet I know there will never be answers, even though my heart seeks them at a time like this.

I have decided that chubby cheeks, bright eyes and radiant smiles are all pre reqs for hlhs. Every baby that I meet with hlhs has these qualities and they tell their story through features instead of words.  Some days, I have decided words would never be enough anyway.


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Paxton is back in the hospital. He came down with a virus that has really kicked his butt.  We were admitted Tuesday night and were hoping to make it a short stay, but the virus has gotten worse since we have been here. Clearly I brought him in just as it was beginning and it still had to run it's course.  He started with 103 fever and has since gained a full body rash with welt like blisters all over.  He is on iv fluids and antibiotics because he is refusing to eat or drink.  While his fever has broken we have set up shop here until we see that his symptoms are subsiding instead of worsening.  Typically I am in this mad rush to get the hell out of here and while I am still desperate to be home with my other two boys, I remind myself of how much worse it could be and to relish all of the moments.  Even ones we would just assume not have such as sitting in the hospital.


Or having to say good bye to one of the favorite people in my life and explain to him as he cupped my face in his hands saying "but I want you Mommy" that I promise I would be home soon. All whilst not crying my face off.


And when he was out of sight,  I lost it. I miss them so deeply when I can't be with them.  I stood in the tunnel looking out the window as they drove under sobbing and waving like a lost puppy. It was a long walk back to the room. The big, hospital hallways seemed extra large and empty with my meager self walking through them. I, of course, pulled it together by the time I opened the door to Paxtons room, because it's what we do here. Because it could be so much worse...

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It's still hlhs awareness week and before I had to jump ship and head to St. Pete I had put together a slide show. I would  like to share it with you all. It meant so much when I put it together, but man if it doesn't mean the world to me now as I sit here mourning the loss of one of Paxtons heart brothers.


(turn off blog music at the bottom so you can hear slideshow)



video


This journey never ceases to rock me to my core...

"I never feel more alive than when I am in great pain, struggling against insurmountable odds and untold adversity.  Hardship? Suffering? Bring it! I've said it before and I've come to believe it: there is magic in misery."

~Dean Karnazes

Love

~J

Thursday, February 3, 2011

a little of this and a little of that...

February proves to be a busy month this year.  Iam going away this weekend and next weekend for a baby shower.  I am heavy hearted at the moment over this because as crazy as it gets around here, I never want to be away from my kids for extended periods of time.  I panic and think of all the things that could go wrong. Once I am physically away for a couple of hours, I do seem to adjust, but the initial departure kills me.  Especially next weekend when I get on a plane.  There's no quick return and that freaks me out.  With that said, I know they are in good hands so I will try to enjoy the alone time as best I can.

This month is also CHD Awareness month.  For obvious reasons this cause is very near and dear to my heart.  I have walked heart walks with pax, alongside dear friends in hopes of raising money for this cause. I run in honor of my little heart hero's every time I pound the pavement.  The sad thing is, and I fully admit until it struck me personally, that i did not know that congenital heart defects kill more children and babies than all childhood cancers combined.  It is most certainly a cause that needs far more awareness.  I know of St. Jude and all of the cancers among children, but what I did not know about was just how large the heart world was, especially among children.  When I walked into the cvicu 9 months pregnant I was astounded at it's size and how full they were. I literally had to be held up because I could not believe this would be home in a matter of weeks.  I sadly and shamefully admit that I did not know.  When I was told my son only had half of a heart in utero, I can remember thinking "I'm sorry, what?"  You just don't know much about it until it smacks you dead in the face.  Today I know with a clarity that brings me to tears.  Wearing red tomorrow in support of CHD Awareness will bring me to tears.  Pax brings me to tears. sad ones and good ones.  He knows no better, but I sure do.  His journey is far from over and so many of his friends are fighting this same fight. It's scary. Every. single. day. is scary.  Every single day is meds and checking profusion and color.   Panicking if he gets a simple bout of diarrhea because if he gets dehydrated we are outta here.  Receiving boxes in the mail with pulse ox probes and oxygen tubing.  It's day to day for us, it becomes a normal, but the fear that gets pushed down is never pushed away, just down.  So I ask anyone who reads this to look at this face:


and wear red tomorrow in his honor. to support the fight that he fights every day of his life.  From the moment he made his entrance into this world he had to fight.  Within an hour he was poked and prodded in more ways than will ever be fair and that was only the beginning of his journey. While it's easy to look at the pictures I post of him in the hospital and feel it in your hearts, those images fade and the deceitfulness of HLHS comes into play.  It's easy to forget the gravity of it all when someone sees that gorgeous smile, or hears the shrieks he can belt out with the best of them.  So many don't know how many babies lose this fight daily.  I know.  I always remember because sadly at any given time that could be us.  There are no guarantees how long we have these miracle babies with us and I never lose sight of that. I can simply look at him and dissolve into puddles. 

 It's surreal this journey.  It's a crapshoot. It's eye opening. It's life changing.  It's forever, for however long that is.  It's something I would never, ever change.  I don't believe pax would have the spirit he has had he not had his struggle.  Every.single. hlhs baby I know has a spirit that words can't seem to define. They, just get it.  They rock it because they fought the fight.  They're still fighting the fight. It's like they just know.  If even half the world had their spirits, it'd by far be a much better place.

February~the month of hearts and of love.  There could not be a better month to group CHD Awareness into.
The month of love and of hearts, broken, fixed, repaired and in heaven to be celebrated, honored and made more aware of today than ever before.

CONGENITAL HEART DEFECTS KILL MORE CHILDREN AND BABIES THAN ALL CHILDHOOD CANCERS COMBINED.  LET'S RAISE AWARENESS AND HELP SAVE MORE LIVES FOR THESE AMAZING LITTLE SPIRITS THAT FIGHT MORE EVERY DAY THAN WE WILL OUR WHOLE LIVES.


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So I have this bucket list and it's been there awhile. some things on it, a long while, others fairly recent.  But I finally took the plunge and picked a full marathon (26.2) miles and registered.  It's the chicago marathon on October 10, 2011.  That would be the day after Paxtons second birthday.  It was my sign.  My motivation to do it. Because on that day two years prior Paxton will have been two days away from undergoing his first open heart surgery at 4 days old.  It never leaves me I tell you. The dates never go away.  So I figure if not now, when... I am in the best shape of my life and it's always been on my bucket list.  I will do it for him.  I will get to the breaking point and it will be then that I will turn to him for strength because there is no pain like having your chest cut open, being put on bypass,  being left open to allow for swelling with a ventilator down your throat, medically paralyzed for days.

While I don't want the details to be forefront forever, right now they still are. Last year was beyond a whirlwind as I was knee deep in it.  There were hundreds of hours and days that I could do nothing, but stand by helpless.  What I would have given to take it all away, to release it all somehow.  That pain. That pain of not being able to do anything is still so raw and I will be releasing on the streets of Chicago in just over 8 months. Hell to the yah!  Thank you paxton for pushing me to my limits. For showing me that I can do things I never thought I could do.  My how we have been such inspirations to each other.  I know I help him when I simply put him on my chest at night and he wraps his arms around me and falls into a soft, comfy sleep. He would stay there all night if I let him and there will be days that I do.

Bucket list item #2: to write a book.

I have always wanted to, have always been a writer.  never found an outlet such as this until we lost our third baby and then found out about Paxton. So many people tell me to compile this. To make it into a book to help others.  That it's real and true and raw.  It's not sugar coated. There  are days I didn't know how to continue on and I wrote just as it felt.  I look back on those today and man if I'm not proud.  Man am I glad I told it like it was because it allows me to really, really be on the other side of it all and celebrate.
Whether I ever accomplish this bucket list item is yet to be determined, but if I did, it would be because of Paxton. Unbeknownst to him, he is my strength, my driving force.

The list goes on....  and those I will share with you more in the coming weeks.  For now I am working on two of them. I am excited and hopeful.  If nothing but to inspire just one other person to do something they never thought they could do or to help someone else trudging this same journey.

Yep, I have found my purpose and while it caught me by complete and utter surprise. While it rocked me to my core. Had me hanging on literally by a thread. It is the most powerful, special, insanely fulfilling purpose I can think of and when I look into those deep blue eyes I know I am home, just like his brothers, they are my home.

It's pretty awesome to think that I  helped to make that amazing little man. That little fighter and that's all the purpose I need.

Happy Weekend My Friends!!!

WEAR RED TOMORROW!  Do it for blue eyes and all of his bff's!!!!


Love
~J

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