Sunday, December 9, 2012

"real life"

i was driving down the road the other day after having dropped off two sets of kids only to return a couple hours later to pick up said kids thinking holy hell i am a serious taxi driver at the moment... my mind then wandered back to this day in the hospital...my friend was sitting beside me, this friend is the friend...you know the one that is always there. silent and f ing strong even though she may not be on the inside.  her name is morgan and i am willing to bet she has stayed with me at the hospital every. single. solitary. time that paxton has.  it started off a bit rocky when the sight of him at one week old post open heart surgery had her woozy, but from then on she was never not there for that boy or me for that matter.... anyway on one of the many stays i was crying to her that " i just want to get back to real life." she looked at me in her calm, quiet way and said "jen, this is real life..."

i will never forget those words, because what i hadn't stopped to realize is she was right, i was living real life.  sometimes real life involves being a taxi driver 5 days a week and others it involves standing vigil by your sons side in the hospital, but one or the other doesn't have more "real life" to it and if there had to be one that did, lets be honest, it would be the latter. it took me awhile to realize that real life isn't a place to be or get to.  "real life" is wherever you are in the present moment.  what i needed to learn was to BE in the present moment.  this is a work in progress, maybe it is for all of us, but i have to reign myself in and just beeee. not think about tomorrow or next week or when paxtons heart will fail or worry that i will be alive long enough to see my boys grow up, but rather just be...here...now.

 it's not easy, of this i know. i am worrier by nature and if i have learned anything from paxtons journey it's that i don't control shit.  i can live under the illusion that i can control things, but it is just that...an illusion and the control freak in me will never win. my house is spotless because that i can control, but beyond that i am screwed... i remind myself daily, sometimes hourly, that i can enjoy today or waste it worrying about tomorrow.  in truth, i waste a lot of time worrying about tomorrow, but i am not perfect and i am learning and trying and growing and isn't that all one can ask of themselves. so while "real life" might be a lot of different things to different people i think i have figured out what mine is...  and i have figured out that my real life isn't the life i asked for sometimes, but it's mine and if i allow myself to be present in it, i can choose to grow from it... just like paxton being sick wasn't the real life i envisioned, but it is very real and it too, is mine and once i learned to be present in it.... i learned paxton being sick was one hell of a blessing in disguise.

...his concentration slays me...

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this time of year gets people all hot and bothered and that pisses me off because aren't the holidays supposed to rally folks together.  come on people...don't make me run the streets on my goddamn soap box.  and trust me i have SO done it...this one time...at publix... it was just after paxton and i had returned from an all to long hospital stay... and my big mouth couldn't stay shut one more iota of a second...lets just say she will never complain in the deli line again... honestly the deli...when "real life" is happening...

and its happening for each and every one of us if we allow ourselves to honor it...

...thank you morgs, ten years my junior, for teaching me the most valuable lesson of all on this journey, "jen, this is real life"

i love you, nugget loves you.



and here's where i say peace out, see you on the flip side, holla atcha, deuces...nyquil calls my name... and yes i still take it to sleep...don't judge me...it's all i medicate myself with...that and champagne...lots and lots of champagne ; )

~night all from west siiiide


ps~

only in florida on 12/9 will you see this....




Tuesday, December 4, 2012

in light of my last post, i would like to say thank you to the overwhelming love and support that rolled in from it. i spent a great deal of time going back and forth on whether i should write about that. in the month that i was absent from my sanctuary here, i realized there was only one reason i hadn't stopped to write... i don't come here to paint this perfect picture of my life or life in general.  oh' don't get me wrong, it. is. a. crazy. freaking. beautiful. life. no. doubt. but that is not to say there aren't major roadblocks along the way and if i skirted around those road blocks and poured glitter all over them and instagram'd them then they wouldn't be the real thing now would they.  (ps it should be noted that i am ALL for "thinstagram" and "hotstagram" just not in my writing)
ten years from now i want to look back on my posts when i read them and think. oh yah! yep! i remember exactly what i felt like in that moment because my words were true and not glossed over.  life sucks ass sometimes. its just the gods honest truth.  it sucked ass when i lived in a hospital with paxton for months on end, but, but, but i look back now on those rock bottom posts that i wrote and do a little jig because i know how i was feeling when i "uglywrote" while doing the "uglycry" and i stand on the other side of that proud! proud that i was brave enough to be honest and proud that i survived.  so, when i chose to post last week i chose to post in honesty.  so, thank you to those of you who reached out.  who sent emails, texts and uplifting messages. you will never know how much they meant to me in a time of self doubt.

my fellow heart mom, angela emailed me this:

"Reading your honest words brought out a lot of emotion, because I can feel the pain and emotion in your words.  You write what I sometimes don't have the words, or courage to put into writing (or on screen).  I feel for you guys and the pain you are carrying.  I freaking love your blog, I love your constant swearing, and how you strive to be genuine and honest."

and i knew i had done the right thing.  for those who are on this journey with us and for me. this is hard and it doesn't come without its sacrifices and hardships.  



oh' and the swearing...yah that was somehow a package deal with this journey. i became a bit of a potty mouth from all the anger and fear. as i told angela,  sometimes just throwing in the damn f bomb adds the emphasis that isn't able to be heard through writing.  sorry dad ; )

****************
so we carry on...we've been carrying on actually and i am behind on pics. my boys are truly a slice of heaven on earth.  they keep me grounded and make me crazy all at the same time. sometimes around 8 o'clock at night when the house finally quiets and i silently walk around cleaning up the remnants they have left in their wake, i wonder about life without children...i can't imagine it. i know its an extremely personal decision, but to me, i don't know what else there is to life and as crazy as that day may or may not have been i find myself giving bounties of thanks. 

speaking of thanks...




we had a lovely thanksgiving here and in spite of all the changes in our lives, the gratitude flowed just the same.  we had feasts to attend, pilgrims to praise and a lovely homemade feast prepared by none other than meeee...oh' wait, i meant whole foods.  i don't do turkeys, won't touch them, can barely look at them with their little legs all tied back.  so, i paid whole food to do the honors and guess what it was freaking good AND cheaper believe it or not.

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

and since i skipped a holiday in there i had to share this halloween picture...pretty priceless right...


i was asked quite a few times where "fighterman" came from and it was a name given to pax in the hospital by a friend of mine ( she's actually one of my biggest cheerleaders too) anyway, her son couldn't say spiderman correctly as a young boy and i fell in love with it when she told us the story in the hospital because well... pax pretty much is a "fighterman" and so it stuck. thank you erin for sharing.

****************
during my break we also had the american heart association heart walk in tampa. and my oh' my how times flies... it never ceases to amaze me how far he has come.



i think it's apparent that pax may be taller than me in no time.  in the blink of an eye he went from our ringlet, chubby toddler to a tall, chatty little boy.  i always get sentimental at these events because i am reminded of the gravity of the situation. there shouldn't be children at these events. there just shouldn't be and yet there are. all around and it's truly bittersweet...


but with that bittersweet comes the gift of eating it up. of knowing just how quickly it could all be taken away and i find that to be a blessing.  every moment with him is that much sweeter and i find that crosses over into all the other moments of my life...


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


Christmas is among us already. i can't even believe it.  we've got trees up and "elfie" in da house.  mommy loves him because he is fabulous bribery. we have a very, very special christmas celebration coming our way in a matter of weeks. our families know, but the suspense will have to keep until it gets a little closer.  lets just say it will be like nothing our boys have ever experienced and it will be celebrating a little boys fight to live in the most magical way.  oh and that "uglycry" it will be present loud and proud.




and a little sneak peek at our Christmas card.....


suits us  dontcha think...

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

im signing off for tonight folks. remember the reason for the season. remember what really matters. that amongst the chaos. peoples worlds are standing still as they say good bye, say hello, struggle to make ends meet and find themselves living in hospitals.  be kind, for every person has a story.....

borrowed from facebook

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

~night all from west siiiide






Tuesday, November 20, 2012

houston...we have a situation


Paxton is ok...he is healthy...although because of his continued health that little naggy  its been to good for to long feeling has begun uh’ creepin... I have been MIA and unless you are my FB friend you were probably wondering wtf...let’s be real... it’s been months...

And this is where houston and the situation come in. In an effort to be as “real” as I have always been here in my sanctuary I will tell this the best that I know how given the circumstances. 

We have a very sick child.  No surgery at this point can fix that.  We have lived 3 excruciatingly hard years since his arrival.  As I have said before, HLHS ran us over, backed up and ran over us again. No one can prepare to dance so closely with your child and death that many times over.  But, we did.  We had no choice. And that doesn’t happen and not change a person. A family. A marriage.  
Without going into details via the internet there has been trouble in paradise shall we say. And hey lets be real, any marriage that doesn’t encounter that under these circumstances is well.... the shit in my eyes.  Because this hasn’t been easy. Can anyone really look at the boy below and say this wouldn't change everything... Not once, not twice, but three times...



***********************
I married a mans man.  One who might as well have been living in the 50’s. He works, he provides for his family and he protects them. But, he could not protect us from HLHS.  That killed him. And when a man can’t fix something, we all know it isn’t going to be pretty.  If you want details, just swing by Naples, the mere mention of our name will get you all the juicy dets, but here in the sanctuary we will leave it at letting go.  Letting go of the last three years.  Letting go of the tremendous burden that has enveloped us in that time. Letting go of the exhaustion. Just.    letting.    it.     go.  

And sometimes to do that a person needs to step outside the box.  Into the freezing cold air... ok 62 degree air...and let it radiate the heart and lungs, clean them out so to speak.  So we’ve stepped outside the box, we are cleaning house. We are moving things around. We are reevaluating what we stand for. What matters the most.  Where we’ve been and where in the ever living hell we are going.  Tis better than to sit stagnant for the rest of our lives...wouldn’t you all agree.  No,no, we need help.  The freaking mothaload of help and “we ain’t to proud to beg”.  We’ve got peeps on all sides of us guiding and advising and moving and shifting. We’ve battended down the hatches.  Focusing only on our four corners and those that bring us good and wise.  And what a perfect time of year to do so... 

I know beyond the shadow of a doubt and so does Dave now, that this Thanksgiving and the 3 prior to this could have been far, far worse than anything we are enduring right now.  Whatever that little boy brings or leaves in his wake is a battle we are willing to take on and fight because that means he is alive.  It means HLHS didn’t win, yet, and hopefully not for a long, long time.  So we take the good with the bad. The hard with the freaking unbearable. The joy with the tears.  The knocked on your ass’s with the getting back up’s middle finger in air.  The stepping outside the box with stepping back in someday.  The letting it seep with the. lettinggggg.  it.    go.  

I have been MIA because I have been busy. So, so busy.  Living in the moment.  Waxing and waning between the truth and what society thinks we should be.  And I say fu*k society because we are who we are and we are not without faults.  Not any one of us, so guess what...it’s hard. There’s hurt. We need help.  We are seeking it.  We are not hiding behind it (well some of us are working on that part with a little help, ahem...dave ;) because either way haters gonna hate, judgers will judge, but those that truly love us will silence the gossip and wrap us in love . We will never move through this if we don’t acknowledge right where we are this very moment and all the moments forward.  So here we stand vulnerable as fu*k, but we stand in truth and hope and forgiveness.  For them....




May you all have THE MOST blessed Thanksgiving. I have spent priors in the hospital and it will move your soul.  Remember the millions who aren’t as lucky to be home gathered around the family table this year, but rather eating cafeteria food and fighting the fight.  

Much, much love to you all.  
j

Monday, October 8, 2012

...three years strong...

video




(written yesterday)
i took a nap today because the man of the hour as you all know still wakes me up every night. i laid there trying to quiet my mind.  it was an old movie reel flapping turning and turning through the memories. 3 years ago today, i had said good bye to my oldest two babies and was en route to st. pete for a morning induction as i write this.  a mirage of feelings were rolling through my very pregnant body and i didn't know what to expect of the hours and days that lay ahead of me... it was more emotion that any human can prepare for.
he arrived.  he fought. fought hard enough for mommy to be given the chance to hold him and kiss him and to tell him to be strong.  yah...hardest words i have ever uttered.  this screaming, beautiful, pink baby boy in no way appeared sick, but oh' was he ever.  i knew the facts, so the tears poured as i thanked the lord almighty that i was given the gift of holding him. for i had been told most likely not. i watched them wheel him away in his isolette where i would not lay eyes on him for nearly 8 hours. i was livid. mama bear freaking her freak that something had gone awry. when i was finally allowed to see him that screaming, pink baby boy was no more.  in it's place was a blue, covered from head to toe in monitors, iv's, central lines, now quiet yet even more utterly beautiful baby boy.  a baby boy that at the time i didn't realize was saying quietly from his warming bed "bring it hlhs!"



paxton west BROUGHT. IT!!!!! in the 3 years since his birth, the boy has endured and survived three open heart surgeries, 3 feeding tube surgeries, multiple heart caths, multiple hospitalizations for uti's, decreased heart function and hand mouth and foot.  he did it with a fierceness to get the f out as soon as possible, with a strength i envy and with a smile that lit up that entire place.  i am so. freaking. proud to call him my son.  he is literally the epitome of strength and he is mine.

tomorrow paxton turns 3.  it feels like we have lived many lifetimes in those 3 years.  this disease does not come into a life without turning it upside down and inside out.  it crushed us, ran us over, moved forward then backed up and ran us over again, but i'll be damned if we ever gave up.  i was his strength when he couldn't fight anymore whether it be the 8th time trying to get a line in and me stomping my once ultra shy ass out to the head nurse and nixing them touching him one more solitary time because he had cried so hard and so long he couldn't cry anymore or a day where i couldn't stop the tears and he would go so far as to get his vent pulled or be d/c'd off milrinone so i could be reminded to celebrate instead of cry. we saved each other the two of us.

...kangaroo care...
it has been a freaking crazy/beautiful ride and if i was asked to trade it for anything, all the pain, and uncertainty, the uncertainty that still remains, the fear, the sadness, the suffering, all of it. my answer would be 100%, NO!
i am a changed person because of my boy. he has taught me and i believe all of you more than any book ever could.   in three seemingly long, but really blink of an eye years, he has transformed his mom and many others along the way.  if only i could do amazing things like that, but having my son do it instead trumps me anyway ; )
today, paxton goes to preschool (with the most amazing, patient, ever so watchful teacher) and he loves it!  he gets to be a big boy now "cause he's not a babyyy!" he is working on potty training, but is behind the eight ball on that for obvious reasons.  he has the vocabulary of 20 year old. in fact, the other day he told me to "zip it lock it put it in my pocket", to which i inadvertantly did because i was blown away that he could say all of that to begin with.  he looooooves his brothers something fierce.  he copies everything they do and is definitely the "scooch" of the family.  he doesn't eat much, but eats enough to not use his feeding tube.  gogurts and yogurt shakes are a staple and i was asked to please send in two every day to school so he has one for snack and lunch~ he apparently was snatching other kids if he didn't have one.  he can count to 10 missing one here and there. knows his alphabet. knows his name, age, my phone number, knows he is sick, has a boo boo and a "button" (feeding tube). still says "no hospital" if we get on I-75.  looves bubble guppies, going to target (ahem...), playing outside on his tractor and his scooter.  loves his mommy with a passion.  doesn't love swimming, but loves the beach.  loves parties and presents.  loves life.... he really, really does. it's a beautiful thing to witness.

dear sweet, brave, pax~there just really aren't words that mommy has for the love that swallows me whole over you. i have spent the majority of today in my own solitude, tears easily flowing as the journey we have traveled together plays over and over in my mind.  you have taught me to seek the good, screw the bad, relish today and fight like hell for tomorrow because we never really know how long we've got.  for all the messes you have made, the tantrums that you throw (and they are frequent), for all of the colored walls, the getting into the cleaning products (which is why i use method ones) and smearing them all over, the pooping in the bath tub, puking on mommy, waking her up every single  night 3 years after your birth, the endless gray hairs i now have but never did before you. for all the fear and the worry, the heartache and the hope, i know without a doubt how goddamn lucky we are that you were one of the lucky ones!  you made it pax.  and while there is no guarantee how long we will have you, you have given me the gift of knowing how to relish every single day I DO have.  i will always worry. my mind will always run away with itself, but i know that when i look at you, you are a true hero. mommy's hero and i am forever changed by you. every day that you see me walk through the door of your classroom and catch a glimpse of me screeching "mommyyyyyyyyy!" for all to hear, my heart overflows that you are here to do so after all you have endured!
happy third birthday to the bravest, cutest, funniest, most heroic boy i have been given the honor of raising. i hope i make you as proud as you make me every single day paxton. i hope the years keep on coming and i hope they are easy for you because you deserve easy.  i love, Love, LOVE, LOVE you.
may all your dreams come true....



love~
mommy

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

Sunday, August 26, 2012

Commence Back To School

We have been busy little bees around here to say the least. So grab a cup of joe, or diet coke, or wine and settle in for a bit. It's a longy but goody ;)  We spent the last few weeks of Summer squeezing in what fun we could...ok and maybe I was a little manic counting down the days until I could squeeze in an hour of freedom.  Three, wild boys all Summer long definitely took it's toll on me. I am getting old after all. Come days end, I was s.p.e.n.t.

We did a lot of swimming in our new pool and in true West fashion we go all out even then ; )


We are now into card and board games big time and as depicted below, I get very into it as well!


We spend days outside running the property. Riding tractors, flying on our scooters. Getting boo boo's and jumping right back up so as not to miss a moment.  What I know for sure about this move from "Suburbia" to property is it is one of the single best choices we have made. It was a spur of the moment, one to many cocktail nights together between Dave and I to put the old house on the market and the next thing you know it sold and here we are.  There was a higher power (and one bada*# realtor) that allowed all of these cards to line up.  We are never inside. The boys play from sun up to sun down. They come traipsing through the house with sweaty faces, black feet and big smiles.  My mother would go into cardiac arrest if she saw these boys come days end, but I know and often remind her it's nothing that can't be washed ; )

...who needs shoes or shorts for that matter... 

We went to the zoo to see the animals, or should I say sweat our as*#es off!  (The Florida heat is scorching right now)  While we there I could remember bringing just the two older boys and being in panic mode when they insisted on going on the monkey boat.  This time, the four of us piled on the boat, sat like angels and listened to the whole tour.  They are growing up and it is so incredibly bittersweet....





i did not make out in this deal... heavy boys right thar ; )

And the best for last...

check out that reddish hair!

I stared at him in awe the entire time as he watched, discovered and learned.  I am still blown away by how far this baby has come...I don't know why I expect that to go away. Ever.

**********************
We started preparing for back to school.  Stocking up on those yummy smelling school supplies, and yes you read that right. I love the smell of new crayons and pencils. I remember being little and loving when I opened that pink box residing in my desk all smelling of my new digs.  Apparently things haven't changed and apparently I passed that on to Mason who smells EVERYthing! The boys got haircuts, Pax included who screamed "don't touch me" the entire time through tears. He hates to be touched by anyone other than those close to him, gee...I don't know why that would be. But, JCPenney girl wasn't phased in the least. Girlfriend shared her gum with him and ran around telling anyone who would listen how amazing he was.  She got to see his boo boo because he had so much hair on his shirt we had to take it off.  Thus the story began and thus she got a client for life because she was so patient and kind with him.






Seriously, they don't get anymore gorgeous than that!  I am so, so, SO blessed with three of the most amazing, kind boys ever.  They blow me away with their compassion for others. Now for each other...that's a whole different story ; ) although when nip comes to tuck they will protect each other like nothing I have ever seen. Mason especially would take me down protecting them if he really wanted to.  If one is in trouble and getting reamed, the others will gang up on me and scream, literally, "leave my brother alone!' and my heart... oh' it melts.  They will always have each other and man does that comfort me.

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

So, ya'll know running is in the Sommer genes, so it should come surprise that as soon as Dad started 5 am practices again, when it was early enough for me to go before the kids wake up that I began to run again. I wonder if I will ever stop, no matter where life takes me it's something I always gravitate back to.  It makes me happy to join his team, motivates me and best of all keeps me in constant contact with my family. I get to see my Dads "horsey smile"  every morning, my brother in his spandex cheering me on always starts my day off right and of course my sister who, like me, was not blessed with the fast "running gene" is the perfect partner. We gossip and complain and sometimes almost fall and then we laugh. Then later that day I will get an email from sister telling me how important I am in her life with a list of all our inside jokes which is endless. Sisters got the memory of an elephant! And I know that those are the moments....

Which led us to Dads annual Fast Cat road race that he holds every year to raise money for his team.  It was stifling out. Like pretty sure my O2 saturation's would have alarmed any medical personnel that  checked them.  I ran. The family ran. The boys ran! And we made more moments.

austin may have gotten "the gene" just sayin...look at that stride!

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

It seems we did a lot of napping too and nothing melts my heart more than a sleeping child/baby so I snapped away...







Please take a moment to look at those PINK piggies. I know, big deal right.  Not with Pax. For 2 1/2 years of life he had purple feet. There was no blood flow to the lower half of his body until all of his surgeries were completed. Today he is pink and that is a sight to behold. I still check them daily. I did it for so long I don't know that I will ever stop.  He is a walking miracle. His doctors~the miracle workers.  I watched NY Med last week with the cardiac baby born with his heart in the wrong place and I wept with that Mother in the truest form because I knew EXACTLY how she felt in that moment. It came rushing back to me like it was yesterday. That little baby had a " complete repair" and I won't lie I was wicked jealous, but as Paxton grows and thrives I fall more in love with him every day.  For some reason every day I wait for that ball to drop.  It's to good to be true.  I think at the end of the day I feel like I have to think that way to guard myself should something lie ahead. If I always carry that, I won't be blown away should it come. It's no way to live, I know, but I don't know any other way. 

**********************
Before I knew it, the day had come.  My babies were headed off to school. Mason to VPK 4, Paxton to blended 3's and my Austin bear was headed into Kindergarten.  Seriously kindergarten!!!!!

From this:


To this:


From this:




From this:

before there were any scars, surgeries, feeding tubes or owies.... ;,,,,,/

To this:


In the blink of an eye....






yes, I stalked through the window on the door : )

A week into school at this point and my boys...oh they are rocking it. Austin gets dropped off in car line and picked up in car line. He walks himself to class and waves good bye just before doing so. I tear up still at that little wave.  Paxton LOVES his class and his teacher. I am told he has impeccable manners and insists that no one sit in his seat even though there are no assigned seats. Mason is adjusting. He is my little actor and puts a bit of a scene on every morning clinging to my leg, but does amazing once I am gone.  I am told that he is quite the sweet talker which is no surprise to me at all ;)

...These are the moments... I thank God that I'm alive. These are the moments I'll remember all my life...

Love and hugs,
j

ps~ stay safe Naples, St. Pete, Tampa peeps!


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