Sunday, March 28, 2010

These Are The Days

It's not called the sunshine state for nothing. Oh' sunny Florida, how we love you. Thursday was the first time this spring that allowed for my sweet boys to immerse themselves in the pools they've been begging for me to take them to.  We all know there is nothing that wears out our little children like an afternoon of kicking and paddling.
Taking quick breaks for ice cream sandwiches and cuddles from Mom, only to turn around and make a break right back to the pool. 
For Those Who Can't Yet Eat Ice Cream And Go Swimming, There's Reading.

And My Personal Favorite... Napping! For those who can't nap (me) I simply adore watching a sleeping baby, watching my boys frolic about and relaxing outside.


We spent this sweet Sunday as a family at the local water park. Roaming the cool waters, enjoying the togetherness, where sunscreen and chlorine fills the air and the worries of the world seem to wash away in the water.

There's nothing we enjoy more than being outside, together soaking up the sun. 

With strong Daddy's who lift children in the air so effortlessly resulting in girly screeches out of my little men!

Where hearing Mommy blowing bubbles sends the boys into fits of laughter. Reminding me how fun it is to have little boys to bring me back to my childhood at the pool with Grams. Eyes burning from the chlorine, sun warming my skin, jumping off the diving board only stopping for snacks. 

Yes, these are the days.

The sweet, sweet days!

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Thursday, March 25, 2010

As the days roll closer to my boys surgery, I find myself avoiding calendars and knowing the date.  I just want to pretend it isn't as close as it is.  I woke up yesterday in a foul mood, it happens sometimes.  I was/am scared, even a little angry and it was obvious.  Anyone who knows me well knows that my anger turns very quickly into tears.  I walked over to Paxtons cradle, stared at him and sobbed. He's so gorgeous and perfect and I sobbed for all that he has been through, all that he is about to go through and all that I cannot change.  My heart overflows with so many emotions for him, above all love.  He's my baby.  He's 17 pounds, big for him, but still a tiny little man.  He's so innocent. With zero idea what lies ahead and while that is essentially a good thing, I just feel like I am a bad Mom for having to hand him over to have his chest opened up again.  The bones that surround his little heart are held together by wires that will be clipped open so doctors can once again operate on his heart, which by the way is the size of his fist... They will wire him shut again after that until next time. Yes, he still has another one after this. Yesterday, it just wasn't fair to me, today it is what it is. I fluctuate constantly and I imagine that's normal.   I do what I can to keep busy. My house is spit shined clean. I couldn't stop this morning. He was napping so I cleaned and cleaned because if I kept cleaning then dangit I didn't have to think. Sometimes, I just want to shut my mind down, if only for an hour.  I cling to him, smother him in my kisses and love.  Wanting him to know j.u.s.t  h.o.w. deeply in love with him I am. He feels it, that I do believe. For all that he has and will be forced to feel in his mere six months of life, if I can make him smile, giggle and calm then I guess I am doing what I am supposed to do. As helpless as I feel, when he follows me with his eyes walking around the house and when he cries when I leave the room I realize that while I may feel out of control in this situation, he is just as in love with me as I am with him.  That, above all makes this all ok. He still loves me. He knows I would change it in a second if I could.  He, my old soul, knows more than I do.  It's almost like he knows how this will all play out. I look into his deep, knowing, big blue eyes and it all melts away. Its just the two of us doing our best to trust in the road that lies ahead.

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Tuesday, March 23, 2010

I Think It's Time For A Life With Boys Post

Ahh, life with boys means destroying the play room by throwing every last toy on the floor just to hear it "boom crash!" Then climbing the shelves that Pa Paw so intelligently bolted to the walls to see how high they can get.  
Truly, this needs no words. It's simply,  life with boys (and husbands =)
I step away for two seconds to change Paxtons diaper and leave it to boys to find a way to hide from me in the blink of an eye. Here is where I found them!

And here is what gave them away...

Tipping over their train table to make a trampoline... at least they are creative!

WWF on the train/trampoline. Even better!

(For those who think I am crazy for having my children so close together...this is why!)

A couple side notes without photos to life with boys: (mainly for me to remember)

The doorbell rang at 7:30 am this morning and the boys yelled "PIZZA!" Guess we better cut back on the take out. 

I coughed the other day and Austin sternly says to me, "cover your mouth." Crap!

Were driving home from school and there's a cyclist on the side of the road and Austin yells from the backseat, "Get out of the street! The streets only for cars, get on the sidewalk!" I peed myself!

"Trees are for the monkeys!"

"Daddy go poo poo!" Haha!  No secrets in our house!

"Mama, you tired?" Hmm...better get some new make up.

"Austin, pee peed on the floor!"

"That's disgusting!"

Look at the birdie boys. "NO, that's a hawk!" and it totally was.

Yes, life with boys keeps me on my toes... keeps me cleaning...keeps me kissing a lot of boo boos...keeps me young and keeps me smiling every. single. day. 

I cannot wait to add Paxton to the mix! 

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Thursday, March 18, 2010

I went in to the boys school to pick them up yesterday and was talking to the receptionist (who also happens to be one of our babysitters) updating her on Paxton.  Another mom standing by overheard me talking about him and must have put two and two together because I never said Paxton's name. She looked at me and said, "are you Paxton's mom?" I said yes I am.  She said, "oh wow it's so nice to meet you, I am so and so.  You are famous and don't even know it."  I, of course went on to say that Paxton is our little fighter and is one of the strongest people I know.  I left there thinking about our conversation.  I know she meant absolutely no harm by her words, but all I could think is what I would give to be a nobody and have my son be healthy. Now, obviously we aren't really famous, but she did know who we were simply by the conversation I was having with someone else.  It sort of made me sad in some ways. I realized laying in bed last night how this has become our life.  That it sort of defines us.  She didn't know me because Austin is super smart or because Mason is our social butterfly. I wasn't the Mom who just had a baby. I was the Mom who just had a baby with half a heart.  Paxton's the baby who is sick.  I thought about it for awhile and decided that's how I can choose to look at it or I can choose to see it as the Mom who just had one of the toughest babies in the world!  She knew us because our baby boy survived open heart surgery at 4 days old and that is miraculous!
I realized that this journey is all about how we choose to look at it.  I choose to be defined by HLHS because it has taught our family more in 6 months than we have learned our whole lives.  It defines us because it reminds us everyday what is important in life.  It defines us because we never take anything for granted. It defines us in our compassion for others.  We realize that it just doesn't really matter if the car hasn't been washed this week or the laundry is piling up.  What matters is rolling around on the floor with my kids

Letting them get dirty and drag it through the house, cause really it's just dirt, it can be cleaned and man if they weren't here we'd give anything to have a dirty floor!

To see the joy they get from being boys is worth every sweep and mop job ever!

I have pretty much learned that anything can be cleaned, fixed or replaced and I have learned that they are all just that...things!

I can say that I was not like this before Paxton. I like my clean house and everything just so.  I can also say I am glad for these serious life defining lessons I have learned.  

I woke up this morning to this comment on my blog. I have mentioned before about "A-Man" Asher is just like Paxton, only stronger.  He has HLHS, he lived in the hospital the entire first six months of his life because he could not be taken off of a life saving drug until his next surgery and he also suffered a stroke during his second open heart surgery.  Asher and his Mama are the epitome of strength. We are proud to call him Paxton's heart brother.  Reading this confirmed that this sickness may define us, but we are better people because of it.  We can choose how we deal with this and we choose to fight and be proud. I have attached below Asher's mom's comment.  Thank you Charity for lifting us up all that time. Thank you for showing me strength when I had none. Thank you for teaching me how to be my son's advocate! For teaching me that we can get through HLHS!

Hey was thinking about you, so i stalked your blog, sorry, bored and a bit lonely,, anyway i cried so very hard, not sure why the pic of you holding paxton made me cry, i just remember how tough you were, and are. Also noticed your shout out to A-rock, please know that I am praying for you, always. Also know that Paxton will most likely make this thing looming called Glenn look easy,, and he is doing so very good now, he is going to be doing 20x's better after his glenn. I hate hlhs, I hate the struggle, and yes we definately should have been at the gymboree, or baby gap, target, starbucks, whatever, but we probably would never have met, and must say you made spending month after month, day after day in the CVICU almost normal, and fun, kinda like a breath of fresh air... This journey is not over for us, it is like climbing a mountain some parts are incredible,easy,beautiful,, you dont even notice the climb,,, other parts are harsh, cold, dangerous, keep your eye on the top, keep your fear at bay, know that God will never leave you, and when you dont have strength, and you think you just can not do it, and you are in the dirty bathroom at the hospital crying, sick, and scared that he is there,, when you are so confused as to why this is happening, he is still there,, how do i know,?? I was alone in the dirty bathroom crying, puking, scared, alone, wondering?? how did my heart boy become a brain boy, how does this happen?? Utter despair, and yet never lost sight because God was still there. You will find comfort, he has promised it to you, and you deserve it. Miracles real miracles, not the stupid petty stuff people say to try to get others to buy into the hype of religon discuss, no real ones, like pax going home before thanksgiving, like asher moving his right arm, those are real miracles,, our boys arent going anywhere, they are the face of God and he can not be ingnored, they are the real miracles, the ones that people can live a whole lifetime and never see,, anyway i miss you, and if you need anything i am not far,,, if wallace isnt home asher isnt a stranger to being at ACH,, love you 

She is right! There is zero way to explain how God has been there for Charity, myself and our sons!  He gave us miracles when we thought they were not possible. Our boys ARE the face of God and holy crap that makes me proud! 

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Wednesday, March 17, 2010

Mommy TLC

Paxton is sick.  He can't sleep. He is uncomfortable. Can't breathe.  Has an ear infection.  Last night proved to be an extremely long night.  The downward spiral started around 7:30 pm just after I put the older two boys down and did not end until sometime around 9:00 am this morning.  The only other time I have seen time crawl so slowly was while waiting to hear he made it out of his surgeries.  He cried and coughed and cried some more.  He just couldn't get settled.  We rocked.  We walked. We tried to eat many, many times. The likes of my nightstand shows that. 

He would fall asleep in my arms and when I would try to lay him down (elevated of course) he would cry.  So finally, somehow, in my fog I thought of this:

His stroller. Oh yah!  I laid him in it and pushed him all around our room.  Until he was finally out. He slept for about half an hour. You know, the just when you doze off only to sit straight up in bed trying to figure out what the heck is going on moment.  So instead I laid off the edge of my bed, one hand pushing the stroller back and forth, back and forth.  This worked for a little while until finally we wound up in the big recliner in our room. He slept on my chest, pretty darn soundly.  I dozed off here and there, stared at the clock moving so dang slowly ( I was just ready for it to be morning) and froze my tushy off.  I couldn't cover up with the blanket because he gets hot so easily. I smelled his hair and kissed him all over.  Eventually, when I knew the sound of my heartbeat lulled him into a deep enough sleep we moved into bed and passed out. ( Thanks honey for this oh' so lovely picture of me =)

What melted my heart the most is that he only wanted Mommy. My dear husband tried to take over for me, but he would have none of that. It made me think of the two months in the hospital when I held him day in and day out soothing him as he healed, apparently he remembers that too.

It was a long night. My heart hurt for him, but we made it.  We went to the doctor today to have her make sure all of that congestion hadn't moved to his lungs, it has not.  We started him on different antibiotics and are trying to keep him hydrated enough to stay out of the hospital. Nights are tough on him. He doesn't want to do much eating/drinking so hopefully with some (more) medications on board tonight proves to be a little easier on him.  

I pray for some rest for our little man tonight.

Thank you Nana Kimmy for coming over today to allow me to catch up on some much needed sleep.  

Thank you God that we are able to spend another night at home together as a family, even if it is in the recliner...

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Tuesday, March 16, 2010

Finding The Silver Lining

Somehow when you have a sick baby, you begin to hear about all the other sick babies. Ones that have done better than yours and ones that are so much worse than yours.  To us, this journey is so hard, but there is so much more suffering going on. It makes me realize our blessings. It makes me realize that in some strange way Paxton is actually healthy compared to others out there. Those who cannot eat by mouth. Who cannot gain weight. Who cannot come home.  He is here with us now.  
He is thriving.  

I am learning day by day to find the silver lining in the changes that have happened in our life. To realize that for every bad moment we are having, someone is having an even worse one.  For every fear we are feeling, someones worst fear has come true.  So I try and try and try to take each day as it comes. To breathe, relax and find pleasure in the simple moments.

Like playing fireman with my Austin who knows that real men wear pink = ) ( it's actually from the breast cancer race)

Or uncontrollably laughing when I realized that this is how Mason put his hat on and how very appropriate that would be.

Or watching the boys excitement as they "dwive" Daddy's truck!

Like seeing the love my babies have for one another!

And having this beautiful baby sleeping beside me every night!

Oh' the simple things in life.  How happy they make me! Like a good meal and comfy pajamas. Like snuggling on the couch with my husband after everyone is tucked in bed.  Like a warm bubble bath and the cool side of the pillow.  My boys are all things comfort and love.  

Yes... there are many, many silver linings!

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Monday, March 15, 2010

Spring Has Sprung

If there's anything I can say about having boys, it's that you live your life outdoors. 

 I love that about them. I also love cool weather, but what I really love is a day like today. Where the sun shines warm on our faces, the wind blowing through making Paxton catch his breath as he learns how to react when a force of air glides across his face. 

 Paxton lays down on a blanket in the grass for the first time and stares at the ever so blue sky. The same sky full of clouds that his brother Austin swears he sees a crab and an octopus as he looks up at the shapes those clouds are transformed into. I giggle at his imagination!

Chubby little feet slap the pavement when they run and get buried in the grass.

They ram their mini four wheelers into trees so hard that it knocks them backwards and off, only to fall into fits of laughter in the grass at their super cool trick they just performed.

  Taking time to love on our cat who also seems to be enjoying the weather.

Chasing each other down the "big" slide!

Laughing big belly laughs that are music to Mommy's ears. 

Spring, how you make us all smile, lighten the load and refresh us when we need it so. 

Happy Spring My Friends~

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Saturday, March 13, 2010

It's A Date

Not a date I am looking forward to, but a date indeed.  April 13th Paxton will be having his second open heart surgery in a mere 6 months.  To date he has endured and survived the Norwood (open heart surgery at 4 days old), surgery to place a g-tube (feeding tube), living the first two months of life in a hospital bed and just recently a heart catherization.  More medications than I can count and more needles and i.v.'s  than any person should have to endure. 

I knew the time was coming.  It's still hard to wrap my head around how our lives have changed. It's hard to wrap my head around the fact that Paxton is not well.  I mean he's almost 17 pounds. He laughs. He cries. He appears to the unknowing eye, healthy.  I just can't believe we have to do this again.  I am more terrified than I can ever put into words.  I spend nearly every minute of every day with Paxton on my hip or by my side.  I cling to moments with him always knowing in the very corner of my mind that there is the unknown.  It makes them more precious.  More sacred.  He sits on my lap as I write this, happy as a clam. It's like he's telling the story with me.  I want more than anything to be able to change this.  To continue living the happy, simple, little life that we are living. As if nothing were wrong.  To anyone who came into our home, it's obvious that something is wrong.  Medications and syringes fill the cabinets.  A feeding pump sets in the closet should it be needed.  A pulse ox machine is never far behind. Binders of medical records fill our cabinets.  Lists of drugs, pharmacies and various doctors line the inside of "Paxton's cupboard. Yes, he requires his own set of cabinets. My phone contains every piece of information that might be needed about him at any given time. His bathroom is full of cleaning supplies for his g tube, alcohol wipes, betadine and a heater. To us, this is normal.  "As if nothing were wrong" means not living in a hospital day in and day out.  It means being here at home doing whatever is necessary to resume some type of normalcy in our lives. Shouldn't I be at Gymoboree or something with him...
I don't want to go back there. I don't want to watch the clock tick so slow my skin crawls. I don't want to kiss him good by and not know.  I don't want him to suffer. To be in pain. I don't want to not be able to hold him.  To make things right for him. Isn't that my job. To take all this away for him...and I can't.  Yes, I know he won't remember, but that does not make it any easier when you see your child suffering.  
He is so amazing, beautiful and yes strong. I know this. I know he is pretty much a rockstar.  I know he has soared through everything thus far.  Oh' it's just the unknown. The what if's. The, could this be the lasts... Ahh! The only way I can describe it is paralyzing. Is it negative? Maybe a little, but the reality is, it's open heart surgery. I can't go in blind. I know the risks. I have seen the risks in a beautiful little boy who beat the odds (Paxton's heart brother- "A-Man") While I more than believe Paxton was given to us for a purpose and I more than believe he is nowhere near done with his purpose, I am still racked with fear.  So is my husband. We sort of tippy toe around it, for fear once one of us loses it then we both go. He loves our little man. While he is still understandably terrified of his meds and leaves most of the medical stuff up to me, he loves him through and through.  I worried he may not love him fully, but I was wrong I see how proud he is of him when he talks to him. It warms my heart.  
I lose at the most inopportune moments. I go, go, go and then something triggers something and it's all downhill from there.  Most days, I am ok.  It's here and there when I least expect it that the reality of it all knocks the wind out of me.  Just yesterday I realized just how much fear I harbor in the back of my mind. While I seemingly go about life, the fear lines every cell of my body and it's only when I lose it that I realize how it envelops me. I do good most days, really I do, it's just you realize when the hot tears pour down your cheeks as if they will never stop that day to day may be ok, but inside it's bubbling up, lurking around every corner.
It is what it is ya know. Gotta do what you gotta do and we will. We will dive in head on and hope and pray for the best.  I will be on bended knee for the next month bargaining and begging,  hoping and praying.  I will pack him up and take him where he needs to be and I will hand him over. I will do what I am supposed to do.  I will melt like a snow cone in Summer when I do, but I will do it.  My heart will be in my throat and 5 hours will surely feel like a lifetime. I have not forgotten each painstaking minute from last time, but it's time. We will forge ahead just as we have done thus far. Please pray for our baby boy. Please pray that he continues his purpose here on Earth with us. 

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Wednesday, March 10, 2010

I Just Kept Running And Running

As I mentioned before, I have found that the most therapeutic thing in the world for me right now is running. It's sort of in blood. My Dad has run all of his life. I ran in high school and my first year of college. My sister and brother even run.  Dad seems to pass this love of pounding the pavement on to al of his children. 

 In January, my sister let me know she was running a local half marathon here in town. While I had not been training and just had a baby months before I knew I wanted to help her.  SO much of distance is mental and time teaches you that.  So I knew I could do it having done it before and I did. That's not to say it was easy, it was not. I hit a wall HARD at mile 10 and practically crawled through the finish line, but no walking. We don't walk. It's just Dad's rule. 
After I did the half in January I knew the feeling I was feeling in my body. That high they talk about runners getting. I felt for the first time in months, some peace inside my body. 
I had to do it again. 
So just this past Sunday my sister and I ran another local half marathon.  As a teenager I hated challenges. As an adult I find I challenge myself on a daily basis. I love it. I thrive off of it.  Maybe it's the distraction, I don't know.  I have been training with my dad in the mornings to prepare myself and get back in shape after Paxton's birth.  3 kids 3 and under isn't pretty on the body and I am determined not to let it all go just because I am a Mom.  I get up at 4 am, feed Paxton, put him back to bed, dart out the door to make it to 5 am practice with Dad. I've been doing it for a little over a month now. I love it. I love his challenging work outs. I love the early morning hours when the world is still quiet and all I hear is the sound of my feet on the pavement or my Dad screaming "all out or we do another one." It's comforting. It reminds me of my high school days when my greatest worry was what I was doing that weekend. A decade later I still run on the same track with him that I did in high school and as I sprint my heart out in the wee hours, I think of how far I have come since then.  I think of how I had no idea that my life would be what it is today.  
Sunday was no different.  When I run, I go to this place, where all I have in those hours is time to think. To hope and pray. To plan and prepare. To get angry. To be happy. To be grateful To realize how far I have come in this life.  It's good for the soul.  I breathe in, I breathe out.  My pony tail swishes back and forth as if someone were patting me on the back.  It's rhythmic, like rocking in a rocking chair comforts us as a child, so does running to me as an adult.  I ran on Sunday. I ran hard.  I thought of all that has happened to our family these past 6 months. I got angry. It's not fair and yet it's been such a blessing.  I thought of the fear that gripped my heart just days prior as I waited to hear my son made it out of surgery.  I ran so hard. So fast (fast for me I should say =) I knew I should slow down, but I sort of just let it all out and knew when I hit my wall I could resume my normal pace.  Instead, I just kept running, hard.  I saw my Dad 200 yards away coming back to cheer me on.  I raised both my arms in the air at him like Rocky.  I was rocking it and he knew I was too! I know he was shocked to see me so soon.   It felt so damn good to have a release. Not crying. Just head to toe, body and soul release.  I finished 13.1 miles in two hours and forty two minutes. I beat my previous time by half an hour. My sister beat hers by 15 minutes.  I was so proud.  Mostly, just proud for seizing the opportunity and going with it. I felt good and I ran with it. I didn't hold back out of fear. I have learned that just recently.  Go and if you fall, well who cares as long as you fall trying. I am learning day by day, minute by minute that you cannot live life in fear.  While that is most certainly easier said than done, it is true and I know that.  So I am trying to enjoy each moment as it comes and I am learning that the best therapy there is in life comes from a pair of running shoes on my feet and the world before it was woken up.  

Before (It was super cold)
Just starting out (Only 13 miles to go= )
I can see the finish line at this point
To my lil sis,
Thank you for being the best running partner there is. Somehow, even at 14 you just know that it's my therapy. I feel that you too seize that time to reflect and I realize yet again how alike we are.  We can be completely silent when we run, yet we are so together.  At the end of 13 miles, I feel like we've said so much and yet we've said so little.  We just get it.  Love you!

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