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

2 comments:

cici said...

As grotesque as I look in red, I will wear it proudly tomorrow for my hero, Little Pax... xoxo

Neha said...

I read it a day late :(.

Pax is adorable! And you are inspiring! I hope you are able to compile it in a book soon. That way your story will reach so many others who can find strength and solace in your words!

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