Thursday, August 26, 2010

Not Ok Today

Remember this post....

Oh my heart. It hurts so bad as I begin to relive those days. It is so unbelievably hard to wrap my head around the fact that it has been a year since we found out something was terribly wrong with our baby.  At this time last year I still didn't know if the baby was a boy or a girl.  At this time last year on this day I was in a heap waiting to get to our specialist appointment tomorrow.  Why must I remember...
I guess because this past year has changed me forever.  I had no idea how far I would fall and how strong I would become getting back up.
I had no idea if my little baby was going to live or die and that feeling of hanging in limbo, dangit, it never leaves you.  I would be spending this night in the undecorated nursery praying for a miracle. I did not decorate the baby's nursery because of the previous miscarriage and I would sit in that room and wonder if this was the real reason I didn't decorate it.

I am cranky. I am sad. I am grateful beyond measure. I am full of tears. I am so many things right now and I don't know what to do with them all. Damn the tears, they won't stop. Hot and heavy.

I want to go in and wake my baby to hold him. To have him squeeze my face and smile at me and blow raspberries on me. To hold him and sob for all that he has been through and all that he has to go through still. He is so strong. So much stronger than I am.

I guess I still have grief for all that we missed. For all the time I spent bonding with him through the bedrails of his hospital bed instead of nursing him in my own.  I hate it all for him and yet "it all" is one of the most surreal, life altering, hang on by a thread, fall down, get back up, soul searching experiences I have ever experienced and I know in the end it will make him so wickedly strong. It hurts though to be his mom and not be able to fix it. To not be able to take his place. To endure the endless pokes, meds, check ups and what nots for him.

I spent this morning scheduling more doctors appointments.  Planning more trips to Tampa. Trying to coordinate. I spent yesterday morning running downtown to the compounding pharmacy to pick up his medications.  He was blue today and I realized I didn't panic. I simply went and got his oxygen monitor and did what I know to do.  It's normal...for us.  And I damn sure wouldn't change it for the world.  If I have him to show for it then I will do it everyday all day, but that doesn't mean that I don't grieve for what I dreamed it to be.

I realize now that Paxtons diagnosis is every Mothers worst nightmare and yet it is one of the biggest blessings our family has experienced all at the same time.  The fear that rocked me to my core 12 months ago as I felt my seemingly healthy baby kicking inside me will never be forgotten.  It is what made me remember this week.
Those days where minutes seemed like eternity....

An eternity to get answers and hope.


Oh' but then this...



























This first glimpse of the baby we were unsure would make it.  This screaming 7 pound 14 ounce baby that has rocked our world from the moment we laid eyes on him. I remember exactly how I was feeling the moment this picture was taken. I am looking at my son waiting for something to go wrong. Waiting for him to stop breathing. I am full of awe, wonder, fear and a gratitude I have never known at the chance to hold the baby I was told I may not hold.



















































Oh sweet blue baby boy!  It was seven hours from your delivery to when I was able to see you again. The rollercoaster began.  Emotional and physical.  My heart was utterly broken for him here and he hadn't even gone to surgery yet.

God, I can't even describe it all. Those months. The fog. The lonliness. The fear. It's like a movie I once watched, yet I know it was real because the feelings are so real they let me know. I remember the morning when my son was FOUR days old and he was scheduled for open heart surgery.  I went in at 5 in the morning so I could hold him until surgery. The sheer terror that I would never see him alive brought me to my knees.

Oh' but he made it.  And he made it through his second one too.

Today we have this:

































This baby who happens to be the happiest child I have ever met.  The strongest, funniest, most gorgeous little man!

And when I feel down, I look at him and know that we may have missed a lot, but we gained a lot too!  He is a gift. The most precious, precious gift.  My miracle. The miracle I very literally begged for. Sobbed for. Prayed for.





































So while this week is hard for me, while tomorrow will be even harder, I realize that for all of the struggles and fear, we gained more than I can ever describe. While the dreams we had for our third born were taken away long ago,  we now have new ones. Far more powerful, meaningful, never take a moment for granted ones...

One year ago today I had no idea just how amazing our journey would be....

Love,
J


Our Weekend In Photos

Oh' sweet family weekends...

5K road race
Aside from pounding like crazy, my heart is overflowing with love as my babies stand on the sideline cheering me in.
Best fan club EVER!
























The boys wanted to run a race too and since their PaPaw happens to put it on, a race is just what they got! Here they are at the start. What I don't show is Mason running zig zag across the track and Austin melting like a snow cone from stage fright.  I couldn't get pics of that because I was tending to Paxton who was sobbing from the loud cheering.
After PaPaws race was a big party and if you know my boys (and me :) we love a party! Slip n slides, water slides and big kids to adore.  I had to carry them all the way up to the top until they got used to it.  The things a Mommy will do for her young ;)
Pure heaven seeing their smiles!
Pure heaven hearing their belly laughs and screeches.
Austin making Mommy have a turn and what Austin wants Austin gets.  My "golden boy" according to my husband. 
Going, going, gone~  (Not sure what is up with my right leg, I assure you it doesn't really look like that)
It was kinda fun! I usually leave being a kid up to my husband, but today the boys wanted me and it's not like I can ever say no to them.  I think I like being a kid...
Slip n' slide of the century, especially when you have Daddy to chuck you down it so you go "super fast"
 Little Mason rolled the whole way down and l.o.v.e.d it!
Paxie kicked and screeched the whole time letting us know that one day very soon he will be in the thick of it all. He wants to be big sooo bad.
Sunday of course is boat day.  We pile on, the wind in our hair, smiles on our faces.  Knowing this is the life and we are blessed. The boys play and swim so hard they fall asleep on the boat ride back.  Love babies so tired they can't keep their eyes open.  Love a day that ends with us snuggled on the couch, finally showered, looking at each other thinking "man this day rocked."
~J


Sunday, August 22, 2010

Best. Weekend. Ever

































Details coming soon...


Love~
J

Wednesday, August 18, 2010

Today

Well, today started out like any other.

Me: getting up at 4:15 to feed the baby, then go die (almost literally today) working out, then race home to shower before the mayhem begins.

Insert 3 snugly children with sleepy eyes, wild hair, smelling of baby just out of bed goodness...

Mason: "Hi Mommy! Get me some breakfast."

Me: "How do you ask?"

Mason: "Pweaze."

Austin: " I no LIKE yogurt!"

Me: "ok Austin what would you like?"

Austin: " a bar, get me a bar."

Me: " I can't hear you when you talk to me like that..."

Paxton:  "Nanananana!"

Mason: "I spiwed (spilled) it!"

Me: getting a hundred or so baby wipes to wipe off the boy, the bench, the table and the floor.

Mason: "Mommy where you going next?" ( because I'm actually dressed and not in ghetto sweat pants and a wife beater)

Me: " To the back doctor."

Mason: "The bwak doctor? I wanna go to the bwak doctor too Mommy."

Austin: "I wanna go to the store and buy a tractor."

Me: " We are not going to the store today honey;"

Paxton: "eeeeeeeeeEEEEEE!"

Me: "I'm coming Pax."

Austin: " I WANNA GO TO STORE AND GET A TRACTORRRRRR!"

Me: "Not today and if you whine you can go in your room."

Austin: Proceeds to flail himself on the floor like a fish out of water. Kicking and screaming.

Me: "Lets go to your room until you can pull yourself together."

Me (again): Dragging a 40 pound child with my ever so sore body to his room while he fights me tooth and nail.

Austin:  Insert door pounding and toy throwing madness

Paxton: Now attempting to flip over his high chair by pushing off the table with his feet.

Me: Move Paxton and give him some cheerios.  Clean up breakfast.

Finally leave for the "back doctor" and sink into the chair of my car as if it were the most luxurious piece of heaven ever.

It's the little things when you have a house full of children....

Where did those snugly,  sleepy eyed, wild haired, smelling of baby just out of bed goodness
children go so quickly...


~J

Tuesday, August 17, 2010

Stream Of Consiousness

(A couple of blogs I read do stream of consiousness posts and today I am going to copy them, this posts content should explain why)

I'm still here...
I can't really say why my heart is so heavy right now.  I talked to a girlfriend of mine and our conclusion is that this year, this insanely crazy year, is catching up with me.

I am nearing the anniversary of life altering news. I know that weighs on my mind.
Why women remember those things I will never know, but we do.

I am exhausted beyond measure, even had bloodwork done for extreme bruising, which all came back normal with the exception of some anemia, thank God.  I just find myself barely able to move at times. I work out (hard) six days a week which has forced me to alter my diet completely. While we have always been a "mostly" organic family I have changed my diet to no starch carbs, more high fats like avocados and nuts, veggies and lots of protein.  Tons and tons of water and protein shakes.  Thus giving my body the fuel it is clearly lacking. I have upped my vitamin intake and omega three's tremendously per recommendation. I am trying to train myself to eat more frequently, but just don't feel hungry.
I am even going to a chiropractor three times a week. What started out as an innocent visit for neck tension led to an xray that shows I have lost ALL the curvature in my spine. Whether from stress, sleeping incorrectly or whatever. In any case this explains my migraines and the muscle tension.

I am  trying all of these things in an attempt to get myself back on track and out of this fog. I try to sleep and don't sleep anymore. Then there are days where I sleep so deeply I wake up unsure of where I am.

I can't figure out if it's because we have finally stepped out of the critical phase of Paxton's recovery and we are nearing the closest "new" normal life we will ever be at.  Life is pretty simple right now.  The monitor is stowed in the closet. Feeding pump waiting to be returned.  Meds are twice a day and only seven now instead of eleven.  My boys are growing like weeds and we have no surgery looming over us for some time.  It's pretty...well, normal.

Maybe I don't know how to handle that anymore. Maybe, I am finally slowing down to wrap my head around all of this.  Holy hell I had a baby 10 months ago and from the moment he entered this world our lives have been teeter tottering on keeping him healthy, on getting him through two open heart surgeries, two feeding tube surgeries and one very bad hospital stay for an insanely high fever/uti.

Here we are rounding his one year birthday and to think of all he has endured. To think of the days I laid in bed at Ronald McDonald thinking I would never make it back home.  That all seems sooo distant and yet it really wasn't long ago.

Life gives me this way of coping, maybe all of us I guess, this way of coping and then when the storm calms, we stop to realize the power of it.

I am quiet. More introspective.  Changed. Forever.


I lay in bed and wonder what our future holds. What Paxtons future holds.  I hold him and rock him and I am sad for how quickly he is grown and ever so grateful at the same time, for that means he's made it! Maybe it's because my baby isn't really a baby anymore and he is our last. I missed so much with him. Maybe that hurts deep down, I don't know.

All I know is this damn Apple keyboard has been my best friend this year. It has held so many tears for me and I sit here today while my babies are napping and let it all out to her once again.  Maybe I should name her ; )

My toes need to be painted in a bad way and the hair from our dogs drives me bananas.  Paxton is attempting to take powdered formula instead of the premade kind. He's not sure what to make of it cause he's spoiled like that.  Mason is so freaking gorgeous and Austin has hit the "four's" in a bad way.  Their birthdays are in like 3 freaking weeks and I need to get my shi*# together and plan them a day they deserve. I  have to go to Tampa next week, oh dread.  I love stream of consiousness because my brain is a big bowl full of mush. Somebody promise me it'll get better.  I danced in my bathroom this morning to Jeremih's "birthday s*#" song.  You know my love for r&b music.  I definetly danced like the saying goes: as if no one were watching.  It felt so good!  Made my soul happy.

I do have three small kids, one who still gets up at night. Not sure what to expect of myself, but anyone who knows me well knows I never, ever stop. So not feeling like myself makes me c.r.a.z.y in a bad way.

Keep on keepin on. It's what we do. It's what I've been bred to do.  I'll pull myself together and post some pics of my amazingly, gorgeous perfect children tomorrow hopefully!

Thanks to all those who continue to check in on our little corner of the world.


Alright, alright, just one...because God he makes melts my heart.


~J

Saturday, August 7, 2010

I've spent a lot of time lately wondering about the future. I mean, it's crazy how Motherhood immediately turns one into a life pondering person. I worry a lot more. I wax and wane through fear and intense gratification. I would describe it as so thankful that I fear it will be taken away.  That at some point the greatness has to end. I'm not negative, just cautious.  Some would say we've had a lot happen to us this year and that we've paid our dues.  I realize that you just never know.  In my eyes, we had a tough year, but our son is home with us weighing twenty pounds with no feeding tube, trying to crawl, splish splashing in the pool like any other 9 month old.  SO many HLHS babies don't make it. So many are on feeding tubes for years. So many have additional health related complications.  Paxton is the "poster child" HLHS baby. It's what we've been told. He is exactly how HLHS would play out if doctors could plan this defect.  How FREAKING lucky are we.
I was wading in the pool with him today reveling in the gloriousness that having my son in my arms on this beautiful summer day really is!

 It is glorious.


I. never. want. it. to. end.

Yet every single time I walk into his room I immediately check for breathing because I am so afraid this will all be taken away from me.  I am so afraid it's been so good that it's time to pay the piper. When in reality our son has half a heart and man that really sucks. But then it doesn't.  Do you know what his half a heart has taught every single person in this family...What he has taught so many more that are not blood related...
Oh' this gorgeous cherub has changed the world in my eyes and I don't think he is done yet.
Thinking back to the days full of the greatest fear I have ever known a year ago this time to see how far we have come astounds me.  I realize that life is what you make it. I have been blessed, as oh' so many Mothers are, with this innate ability to do what I have to do.  Whatever we have to do for our little bugs, we somehow muster up the strength to do it come hell or high water.
I thought I was a good Mom before Paxton, but now, now I know the absolute fragility of each moment given to us, and that's with any child. We don't know our fate. We don't know how it's all gonna go down and I am a constant work in progress as I find the control freak in me is not in fact, in control.  That no matter what I do, how many times I check my boys breathing, his destiny is not up to me.
Nor are my other two boys.
I love my babies with every fiber of my being. It's so hard to let go. To allow life to play out however it's going to.
So I do my best to take it one day at a time. To relish the small things.

The moments where Paxton looks at me with pure joy.


 When Austin looks at me with his angel face and says " I wuv you Mommy."

(obviously old pic of course)

Or Mason saying "Hold me Mommy, sweep wit me" (Sleep with me) and I do.


Oh' the power they have over my heart. It's absolutely indescribable.
I spend my days praying that their Dad and I are able to be here on this Earth for them until they are old enough to navigate it on their own.
I pray that my children's health remains intact. That they never have to suffer. I know the suffering that happens, my youngest has endured it and I have seen far, far more worse with my own eyes.


I pray that my children become good stewards on this journey..

There is so much that takes over our hearts when we make the decision to have children. The moment you find out you are with child, you are different and when that baby makes his or her way into your arms you are never, ever the same.
I will never be able to go back to the freedom my heart knew b.c. (before children). My heart is theirs and while it will always be full of worry, fear and nervous anticipation; it will also be full of gratitude, hope and a love I will never really be able to put into words.
While I am changed beyond anything my mind could have ever imagined, I know that no matter how heavy my heart feels at times, there is nothing in this world that can compare to being a Mommy. To feeling them kick inside my belly. That first time I laid eyes on 1, 2, 3 of them as they entered this universe wailing at the top of their lungs.





The pride I feel each time they accomplish something, say a new word, show kindness to each other and use their manners. It really is priceless and worth the sleepless, sometimes heart wrenching moments that come along with Mommyhood.


(Oh' i phone, how I wish you took better pictures...)



"It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up -- that we will begin to live each day to the fullest, as if it was the only one we had."

 
Dr. Elizabeth Kubler-Ross

~J

Wednesday, August 4, 2010

Just The Five Of Us

Imagine the boys surprise when after a six hour drive, which they were pretty tolerant of by the way, they got to stay at an awesome "hotowel" with four pools to choose from.  

Oh' the sheer joy on their faces when Daddy chucked them in the air so effortlessly. I can barely lift them to my hip anymore and he makes them look like little torpedos and boy do they love it!


























Night or day we could be found in the pool. Naps were few and far between. The boys likey the water, what can I say.







And stopping to belly up at the bar was always a hit too!  Virgin daquiris with whipped cream cause really can it get any better... I even savored one or two or...well you get the idea, myself.  Delic!




Life is what you make of it and this family is doing just that.  Last year at this time our world was turned upside down when we were told that our son was extremely sick.  Nearly a year later, we are kicking a#* and taking names! Well, actually Paxton is, cause he's always had it like that!


The pure joy this little guy brings me. Can you feel it?

And I'm not sure, but do you think I am in love...

(Mason is wearing his babysitters sorority hat. He's "reppin" as she would call it, and I would so say he most certainly is!)

I had to put this one of Pax on here because it isn't photo shopped. Those are actually our son's eyes! Breathtaking! Quite frankly I am wicked jealous, but proud every time someone comments on them, which is roughly every time someone sees him. Just wish I could say I graced him with those bad boys!

The boys like nothing better than living the surfer life of romping around in all things water, sand and sun. There's nothing Mama likes better than how plum tuckered the boys get living that life!

And maybe, just maybe, Mama gets a little plum tuckered too!

(Thank you honey dearest for capturing this ever so lovely shot of me catching flies!)

We are so blessed to have each other and this time together. 
My heart just swells over seeing how happy and excited my children get 

Oh' this precious family is all I have ever longed for! 

"Juuust the five of us, building castles in the sand!"

~J





My Peeps

Visitors