Thursday, September 27, 2012

..it's a brutally honest kind of day...

i have a shit ton of stuff to do today, but that went to hell in a hand basket this morning when i opened an email to read that another beautiful baby and her family have joined the heart world.  i made the mistake of reading it at a red light which only led to sobs of tears. it's not fu*%ing fair!! these babies do not deserve this. i am so angry today.  so, so mad at the unfu*%king fairness of it all.  and yes i am cussing like a sailor today because well... because i can and because sometimes adding the f bomb for emphasis helps.  i have been doing pretty good, but today driving home in my mommy minivan i cried like i haven't cried in a very long time.  his birthday is coming up.  i have a lot of emotion pooling in me. and i saw photos of a beautiful baby girl who is fighting the fight, just beginning her journey. i saw a mama just beginning too. learning ropes no mom should ever have to learn.  god i remember every beep and alarm sending me into a full flipping panic in the beginning. i remember the fear and the doubt and one look at those beautiful people in the pictures brought it all back like a goddamn tsunami. i want to spill out all these words to this family and yet i can't so i came home...to do what i always do...write. i am pretty sure the car is still running in the driveway as i sit here because i jumped out to run to my rock...my keyboard. i will write this goddamn book.  what i wanted most this morning was to know that beside  that mommy was a little book, something for her to hold that says i get it. i have been there. i am here.  there are medical books by the dozens but those don't resonate with a mom who's sobbing in fear, in uncertaintly. i needed someone to say it's ok to be fu*%ing scared. it's ok to be mad. it's ok to be overwhelmed by all of the medical jargon. it doesn't exist.  i will not rest until it does.  i am nobody special in this world and i have spent many a nights wondering what my purpose here is and i would like to think that through one little boy who grew in my belly and fought one hell of a fight, who still fights one hell of a fight, that, together, we can help others. that these tears, this fear and this anger are not in vain.  1in 100 births are born with a congenital heart defect and that's just not ok! this is not ok!  today as we all go about our lives, whatever they may hold, i know there are lives standing still in st. petersburg and all around the world, as they watch and wait to see how their journeys will play out. i have seen first hand the good, the bad, the ugly and the freaking beautiful! it hardly seems right to get in my car right now and go to target to get tampons, yes i said tampons, when babies are fighting so hard and families are suffering. but, life does go on.  the world keeps spinning and inside my whole heart i walk around with that knowledge. the suffering; the hope.  there is always, always hope. and as the tears continually flow today i remind myself that no one can take that away from us.  i look at my boy and know that hope sees fruition and i pray from the deepsest part of my being that others are as blessed as i am to know that all of this fight and hurt is for a much, much bigger purpose than we could have ever imagined.



until i know further that it's ok to write about them here, will you please pray specifically for this family that i learned about this morning. this family is currently residing in paxtons old stomping grounds. this family on the first leg of this long journey...



love and heart hugs~
j

Tuesday, September 25, 2012

the hearts gratitude....


it's a word that I do not take lightly.  i have so very much to be thankful for as the years have passed along and i have learned a heightened sense of that for which i now find i was lost without prior. thank you paxton west.
the boy that has brought so many people together in a way that i did not realize was possible. i came to understand through the big blue eyes of my little boy that amongst the chaos this world tends to hold anymore, that people can, will and do slow down to reach out to those in need. those fighting fights they didn't ask to fight, but do anyway.  for that... i am grateful.

thank you.  thank you dear friends who have donated to such a wonderful cause. i have been still in writing this post because sometimes i don't know how to say thank you in a way that expresses how much it means to me, to us.  a simple thank you doesn't do it justice.
1.) that you take timeout of your day to check in on our tiny little corner of the world, namely a boy with half of heart.
2.) that you choose to give your hard earned money to these children who struggle every. single. day, who take medications every single day, who walk around with feeding tubes in their bellies, who have helicopter moms watching their every sneeze, cough or snort for fear it is something they won't be able to fight.

from the depths of my once shattered, but now so incredibly grateful for this journey heart, i thank you. thank you to those who let themselves be known and to those who do not (Scottie To Hottie!!!) for following us on this journey.  he's worth it, of this, i promise you!

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

10 years ago, Paxton would not have lived. they did not have these 3 surgeries that have extended his life, allowing him to grow bigger, allowing us precious time.  funding, research and freaking A-MAZING doctors and surgeons (Stapleton and Chai to name a few!) are what have given Paxton this chance.  can I get a whoot whoot shout out to them!!! 3 open heart surgeries peeps!!! THREE! at one week old, six months old and two and half years old.  it blows my mind every time i write or say that.  it blows my mind even more to go back to those days, those endless, endless days in cvicu. the months, where time seemed to stand still. how i did it, i will never understand and yet i know if it happened again tomorrow i would do it all over again (mommy auto pilot). that said, what did get me through those days was this blog and the ability to spill it out. to cry all over the computer. to slam that mother shut in anger.  only to open it again and find messages from you all

( i interrupt this writing sesh to say that this universe is ohh so wise... i am writing and listening to norah jones radio and michael buble's i wanna go home just came on... oh my heart!!! i remember the exact moment i listened to this in my room at ronald mcdonald house. my one month old baby was across the street fighting for his life. fighting to go home. i remember every. single. thing. about that moment.  "...and i feel like i'm living someone elses life..." i remember hearing that line and rolling over into the fetal position and crying like i've never cried before, alone.  oh but, here i am, at home writing just as i was then, reminded once again that we freaking made it. thank you universe for that gentle reminder; gratitude.)

... the messages... from you all.  they very literally saved me.  to know that people cared, we're checking in, lifting us up and loving us from near and far was one of the greatest gifts i could have been given.  it seemed whenever i needed a swift kick in the ass, just the right person would come along to give it to me.  or if i needed a hug, another person would send just the right words to remind me that i could do it.  my time in the hospital with paxton was a time in which the internet, texting, cell phones and computers became a thing of praise, because y'alls lives don't stop just because mine did and yet the ability to receive those thoughts and pick me ups at the touch of a button allowed one mama fighting so far from home to feel supported.  so thank you then, for wrapping us in the virtual love and thank you now, for continuing to do so even though the battle has ceased for the moment.  time will tell how this journey will play out. In the mean time it's up to you and me and paxton to keep fighting because 10 years from now when his half of  heart may begin to fail, maybe just maybe, there will have been enough research in that time to prevent, fix or help him.

the battle has ceased, but the fight continues.

i love you all so much and while a simple thank you will never be enough, a thank you it is for now until i send you your heart shirts (designed by mowah!!!) out to you at the end of October.  The virtual love, the virtual hugs, yah they're coming to you all now. Whether you donated, said a prayer, read along silently, or write along in praise!

that's an indescribable love right there... a love that never knew if it would see her son alive or get to hold him, but they put him on my chest and it was all over... all those weeks of wondering...over... i couldn't take it...
(ps that's a shit ton of people, with more out of the cameras eye behind the doctor, ready to step in at any moment...there was NO shame in that room :)

there are no words...none...




with gratitude, love and massive hugs~
j

Tuesday, September 18, 2012

Going there....

I have been toggling back and forth on this post for quite awhile now.... Lately it's been eating at me a lot more than normal. I lay in bed at night and it comes over me.  All you moms of children with life threatening illnesses know what it is that I am speaking of.  It's all consuming.  The it, is that all consuming fear and worry.  One thought leads to another and the next thing you know you have devised a life changing catastrophe in your head.  None of mine have yet to see fruition, but I continue to let that abyss swallow me time and again.  Like a couple of weeks ago, when Paxton, who wanders into my bed every. single. night. of. the. week.  chose to sleep in his own bed all night and I awoke at 6 am reaching for him only to find that he was not there.  I immediately went there in my mind.
It went a little something like this...

...he didn't come into bed with me. something is wrong. is something really wrong jen or are you being dramatic.  is it mothers intuition or is just that deep seeded fear that comes with having a sick child and then the two get totally blended together in a hodge podge of total panic.  today is his cardiology visit. how could this happen today. now you have to go tell dr. s that today of all days he didn't wake up.  how will i make myself walk in there and face this and keep myself together for the other boys...

I was frozen. Sweating. Heart pounding in my bed. Moments flashing through my mind...


THIS.  It never, ever leaves you...

As it turns out, Paxton did not die in his sleep that night.



And he has not chosen to sleep one more solitary night in his own bed. It was a total fluke, but the fog that encompassed me after that morning lingered throughout the day. I remember texting a few friends asking if it will ever go away.

It was only last night that I realized it won't.  It won't go away with Paxton or with my older boys.  I find myself constantly worrying that the ball is going to drop. This can't be true. All three of my boys, home, happy and as healthy as they can be right now.  Why does having one sick child suddenly turn you into this freak of nature...
Mason was buckled over screaming that his belly hurt last night. Over and over. My mind immediately went there. He's sick. He has something. This is going to start all over again.
Part of having a sick child is learning about all of the other sick children.  We unite. We hold each other up when no one else can understand. But with that comes knowing to much sometimes, but me, I can't turn away. I read every word they write and I find it turns out to be a double edged sword. I can see how many people turn away from the hard.  I cannot because if it were me, I wouldn't want everyone to abandon me because it got hard.  Therefore I can't do it to them. So I read and those words turn into my fears.  I read to much and worry to much. It comes with the territory.  I also saw to much in those hospital rooms and I know the worry from that too, comes with the territory.

It's an unending cycle. It's draining, I won't lie.  I had to answer this class questionnaire for school and one of the questions was is there anything about your child that worries you...
My answer: is this a loaded question?  Truly I wrote that because the list goes on with him and them. For all of us. We mothers, bear this burden all day, every day caring for our littles.  Ensuring their safety. Knowing when to much is to much and to little is not enough.  It's a big, bad, scary world out there and I personally, as do most mothers, make it my job to protect them from it, but the reality is there is only so much we can do. We are human. With faults. And good days. And bad days. And strong days and weak days.

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

I ran this race two weeks ago that kind of reminds me of life.  It was called the Dirty Foot Adventure and as I wrote the last sentence in the paragraph above, the race popped into my head.  It was a 6.4 mile run through mud and slop and a series of 31 obstacles. It. kicked. my. ass.  It took 2 1/2 hours to complete the course, but in that time I kept going. Kind of like lately with my worries. You let em' soak, like my feet in that mud, then I pulled and pushed forward and kept going.



 Or standing on top of that 20 foot tall rock wall with only a rope to climb down, scared to death.  There was only one way to conquer that mother and after much persuasion I did it.  I climbed down. Just like I climb down these mountains of worry that consume me at times.


I finished and that silly little medal around my neck means so so much more than just finishing the race itself....
And today , I am teetering on the top of one of those damn mountains, but just as I write through tears at this moment, I know that tomorrow really will bring a renewed strength.  It never lasts long. It's thick and heavy in the moment, but passes quickly and for that I am thankful. I remind myself that I don't want to live my life in fear. Consumed and missing the present.  Sometimes hourly I remind myself of this.  I think we all do.  And that is ok.




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

I was at this moms dinner a couple of months ago and one of the moms said does anyone else have these hell hole days where you want to pull your hair out and lie on the floor in the fetal position in tears? Oh the comments that ensued!!!

After listening for quite some time that moms reply was: "well the next time when one of you are having one of those days, let me know so I know that I am not the only one."  Hey S, I have those days a lot! You are NOT the only one.  In fact, those who don't have those days quite frankly make me wonder.


To my heart moms, past and present I get you. I hear you. I understand.  To moms in general. Just moms living the dream, raising babies, doing the best they know how one day at a time. I SO get you. I hear you. I understand.  Just keep hanging on ladies...



Love and hugs~
j

birthday post coming soon...it was pretty freaking amazing...

Wednesday, September 5, 2012

Near and Dear

Hearts...hearts of all kinds, healthy, whole, broken, fixed, new and old are very near and dear to me.  I never really spent a lot of time studying just how freaking amazing that organ is until I had no choice. My baby boy...he's got a broken one.  Even three open  heart surgeries later, it's still broken, BUT it's still beating.   He is still here with us just about to turn 3 years old.  As with every birthday of his (and my other boys for that matter) I drop to my knees in gratitude for that. There were many days I didn't know that we would ever make it this far... There are many that don't make it this far.  I still spend many nights wondering why us...how does he choose...  My whole healthy heart is drawn to other families going through this journey and I feel the stories,  their gains and their losses to my very core. I silently cry for them, many that I don't even know personally, only through the heart community. That community I speak of, it's huge!

So there's this association called the American Heart Association, ever heard of them ;) Well, they are one of many and one of the biggest to bring awareness to hearts.  Heart disease, heart defects and the like.  Every year Pax and all his heart brothers (and their parents)  join the big American Heart Association Heart Walk to join in the fight. And lets be real, if anyone can melt peoples hearts, its these guys.  They should be the poster children for them because who can say no to those faces!

~heart brothers and mamas united~

~fighting the fight together~

~big brothers surrounding and supporting baby brother~

They hold this massive event to help bring awareness to those that aren't versed in hearts, just like I wasn't prior to Pax.
Awareness to facts like heart disease doesn't just affect older people! It affects 1 in 100 births! Pax being one of those 100.
Read some more statistics below.... It's mind blowing...

I look at this face then read below and it makes me want to fight for more! Fight for all of the children like Paxton.  This is lifelong for these children.




  • Congenital Heart Defects are the #1 birth defect worldwide
  • Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide
  • About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
  • Each year worldwide 100,000 babies (under one year old) will not live to celebrate their first birthday
  • Each year in the United States approximately 4,000 babies (under one year old) will not live to celebrate their first birthday
  • The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research.
  • Though research is ongoing, at least 35 defects have now been identified
  • Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood
  • It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

(borrowed from itsmyheart.org)



SO....where am I going with this you ask.... well we're going on a walk.  A heart walk. And we hope to raise money which will be used to raise awareness and fund more research into heart disease/defects.  I know... I know... everyone asks for money for this or that.  I hear you. I get it.  But I am just a mama, keeping a promise to her boy.  So I am asking all of you who have prayed for Pax to clean out the couch and donate your change. Check under the seats of your car. Forego your morning Starbucks run~ I will even forego my morning diet coke and you all know how hard that will be for me.  Any and everything helps. I know these are tough times, but I also know there are children around the world that need our help.  As a mom, that statement alone moves me.  It is due to organizations like AHA that allow this research to happen,  that push for more knowledge to be gained, leading to more lives saved.



Do it for this boy. For all those who have gone before him, for all of those who continue fighting the long, hard fight and for those yet to begin.

To help, click HERE.

Find our name at the bottom and help however you can. No amount is to small.  From my Mommy heart to yours..... thank you. Thank you in advance for loving my boy and all of these children that fight harder than you or I could ever imagine possible.

We love you...


Love and hugs~
J and P

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