Wednesday, October 27, 2010

I'm Still Here...

Gosh, it's been far to long.  So much has happened since I last wrote.  Aside from going through some things emotionally, we have had the flu bug run through each of our children  and managed in the midst of that to have a very amazing 1 year birthday party for our miracle boy.

I have so much to catch up on.  Tonight I finished all the bookkeeping for our company and the boys seem to be on the mend. I am waiting on photos from our dear friend Rayna who volunteered her time to come and take pictures of Paxtons party.  Things are slowly falling back into place. I am taking some time for myself and working through this past year with some help.  Now that things have slowed down some, the reality of it all seems to be setting in. The auto pilot that I have been running on for the past 365 days is taking a break and the recollection of it all, the reality of it all and the emotional trauma ( and yes it was actual trauma, that has been confirmed ; ) of it all is hitting home.

Once the pics come in I will be sure to post them. In the mean time I am going to bed early these days.  Trying to give a little t.l.c  to my soul. Don't give up on me, I'll be back. Just taking a much needed vaca from it all and letting it filter out for now.

I'll be back later in the week.

Night all!
~j

Monday, October 11, 2010

I Keep Trying

One year ago today, my baby boy was only hours out of his first open heart surgery at 4 days old....

I will never, ever forget how he looked when I first got that glimpse of him post op.  It took my breath away.  He was clinging...fiercely.

Our journey was just beginning. Months of it.

A.M.A.Z.I.N.G to be on the other side of it.  There's more to come, oh' yes there is, but that leg of it is behind us. He is bigger and stronger now, no longer the fragile 7 pound baby having to endure it.

Oh' time, once again, you never cease to blow me away....

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


So, I keep trying to do it.  To write the letter. To the most amazing little boy in the world.  And I can't.  It would require an entire day in hiding because the tears will surely not stop.
Every year I write each of my babies letters on their birthday, but this one takes the cake, no pun intended.
I'll get there. I'll do it. When I am ready.  It took me a long time to do a good bye letter to Tadem once he made his way to heaven, but eventually I did it and while hard to read, it is something I cherish.

So in the meantime, until my heart is ready to put the past year into words for my boy, I am just enjoying each and every minute with him.  Watching him grow and smile and finally learn to army crawl. He scoots all around the house and tries ever so hard to keep up with his brothers.  Oh' he pants and grunts and it is very, very clear how taxing it is on his heart. It makes me sad. It's hard for me not to pick him up and oftentimes I do make him take a break because he doesn't know when to.  But it is what it is and I am told I have to let him live, so I do.  I let him scoot and crawl and roll to wherever his heart desires, what he doesn't know just yet is that I am right behind him ready to scoop him up should he push it to hard.

He lets nothing hold him back.  


And he loves with all of his heart.



And I love him with all of mine...

Night all
~J

ps birthday pics are on their way.

Thursday, October 7, 2010

Today

Today happens to be Thursday too.  Last year on on this date was a Thursday as well.  I remember that because I remember every little detail leading up to and after the birth of Paxton.  I remember today was hellacious for me. Today was the day I said good bye to the boys for what would wind up being two months.  Today is the day I packed what I could into the car as I waddled about preparing to meet Paxton.  I rubbed my belly incessantly knowing this was it.  Knowing I could no longer keep him safe inside of me.  I had done all I could do which to this day still feels like not enough.  I was utterly heartbroken.  Lost. Scared beyond reason.  Yet, somehow I drew up the strength to tuck my boys into bed, whisper how much I loved them, sobbed all the way to the car, got in and drove away. When I think about the tremendous strength that took today, I don't feel like I could do it again. Yet somehow I always muster up and do what I have to do.  It amazes me that when I think I am my weakest, it is then that I am strongest.
As I write this, the exact feelings I had one year ago on this Thursday have welled up inside me just as raw as ever.  This week, it's well killing me, emotionally. I wish I could explain why. Those who know me best don't need an explanation.  Those people just get it.  They don't say to me oh' but look at him now. Because I do look at him now and I can do nothing but smile, while it may be through tears, I always smile, because that's what Paxton does to me.  The acceptance of the grief, sorrow and never ending fear is really all I want. Acknowledgement that this really does blow in a big way.
I received word, yet again, yesterday that another HLHS baby has gained his wings. Another one. I wrote about one earlier this week and here I am writing the same things again. How can these babies be so fragile yet SO unbelievably strong at the same time.  I delve into his strength every day. I look into those eyes and swim in them.  They make me whole. Remind me that it is what it is, so lets roll with it.  And I do. I always do. Only a select few people really know the depths of this.  (and maybe a few readers ; ) but only via words on a screen, not emotions rolling hot down my face) I know that I am not alone. I know that while I may feel that way many a days, I am not.  While I may feel helpless and that I can't be the Mom I want to be to him. I know he knows I am doing all that I know how.

I canNOT believe tomorrow has been one year since I first laid on eyes on his gorgeous face.


And when I did lay eyes on him for the first time, I sobbed like I have never sobbed before.  He was alive.  He made it through his birth. From here I did not know what the journey held, but I knew I had that moment with him lungs wailing, big puffy Mama lips quivering at me.


Then I was told I could hold him for a short time and I sobbed even more.  I was told I may not get that chance. It all depended on how stable he was.  What I didn't know at the time was that when they said to me "it all depends on him" that meant he was going to show us how it was done.

I'll never forget holding him.  Fear eating every inch of me waiting for something to go wrong in my arms. He never did. He just cried and when he heard my voice, he soothed.  I memorized him. Every square inch of unswaddled deliciousness just in case.
His isolette waited at the foot of my bed for him to be taken via tunnel over to the children's hospital. Nurses, doctors and students filled my room monitoring and learning from a story none of us should have to endure.  I didn't even know anyone was there until I saw the pictures, it was just me and my boy.
Oh' it's all so real as I type.  When they told me it was time, I leaned into him and told him how deeply I loved him and to be strong. That I was so proud and I would get to him as soon as I could.  I remember handing him over with my entire heart in tow and watching them put him in his isolette.  He went still and I sat up thinking that was it.  They assured me he was ok.
It would not be until 7 hours later that I could see my son again.  I was wild with madness.  I needed to get to my baby. Needed to lay eyes on him. Needed answers.
This is what I saw when I arrived.  He was the baby I was warned about. Blue and still...


8 hours old and this is all he knew.  They had poked and poked every nook and cranny trying to get a line in until finally they put one in his umbilicus.  I was empty. Empty for him. Angry for him. Sad for him.  My body begged me to hold him.  I could not.  As I stood up to kiss him, blood poured out of me and I was sent right back to where I came from.  I tried to stay, begged them to let me, but once again I was without my baby.
It was then we were told that at 4 days old his Norwood Operation would take place.


There are no words.

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

And so begins the longest year of our lives.
The most emotional year of our lives.
One year ago today we departed and we are still en route to the destination.  There has been some wicked turbulence along the way, but we always manage to hang on. Sometimes by a thread, but we continue on.
I realize this is life.  This is it.  We are warriors, Pax and I. We forge ahead no matter what.  I continue to fight the fight for him. To be his advocate. To take him to whomever, wherever he needs to be to get the best medical care.  And he, well he continues to fight the fight just as he has from day one.

I think of our life today without this chapter in it and I wonder who I would be.  I am so different now.  I am a mom to a special needs baby, I am a nurse, I am scared every single day of my life, I am a fighter, I am ever so much braver, I finally, at 30 found my voice, I am an advocate and I am tough as nails.  Truly, I wasn't a whole heck of a lot of those things before, but I was forced to become them and I rose to the occasion.

Oh' this day. This insanely surreal day.  Will you ever fade from my mind. Probably not, just as tomorrow never will.  Every little detail is etched in my mind and my heart forever.

One year later and I can say we both kicked a*# and took names.  I can only hope I have made him as proud as he has made me.  Together we fought this battle and together we will continue.

One day at a time... just as we have always done....








Love
~J

Tuesday, October 5, 2010

Full Up

Man oh' man does this time of year fill me up.  I have so many emotions coursing through me right now. My mind is tired and weary, yet I can't rest and I can't eat.  It's strange.  My belly feels so full of emotion that I can't put anything else in it.

 I was in the throes of fear at this time last year, it has resurfaced in a way I was unprepared for.  Just yesterday I received word that five, yes, five, congenital heart disease babies have gained their wings. One of which was two weeks old.  I  sobbed.  I slept with Paxton last night. Sleep was in and out.  It was a hodgepodge of sadness and curiosity.  I would wake and wish it was morning.  I laid there, groggy from lack of sleep, and wondered how He chooses.  Why them and not us.  Then I remember there are still no guarantees and my heart twists.  Sure there are no guarantees for any of us, but the stakes are far far higher in our case.  If he sleeps to long I run in there, if he breathes to hard I immediately check for cyanosis.  If he cries, I pick him up.  I look at him in all his gorgeousness and cannot believe he has half of a heart.  He loves with more heart than anyone I know and I'll be dammed if he isn't the happiest baby ever. He doesn't have to be. He has every reason to be cranky, yet he's not.  He gets it.  He knows he made it and he's living it up and I tap into that every day.
Today though I am crying.  I am emotional. I am the woman I was one year ago curled in the fetal position arms wrapped around her big belly wondering if her son would live.  Would he survive birth and if he did, open heart surgery at a mere 4 days old.  It was the thickest, heaviest emotion I will ever know.  Handing him over on day 4 was indescribable. I literally do not know that I can put that into words.  My baby boys body would be taken over by a machine and I had to hope with all that I had that the doctors and God would allow him to come back from that. I woke at 2 am so that I could go and hold him for hours upon hours before the doctors arrived.  I held him and wondered if this was it.  How can you not when you know the risks. He was a mere 7 pounds having his body cut open. Oh' the unfairness of it all.  6 months later he did it again. My heart ached for him.  I hurt because I am his Mom and I could not take this away for him.  I watched him in pain, screaming from the drugs that made him delirious, begging him not to move, soothing him the best I know how without being able to hold him to me.  Every ounce of my being screamed at me to hold him. Hold your baby. But I couldn't move him. He had lines and catheters going every which way.  It was intense and until you walk in and see it, there is just no way to prepare yourself.  The duskiness of his skin constantly reminding me how closely he was clinging.

( Tell me this is fair)

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

It's sort of like a death. All of this.  You prepare yourself for this baby and for things to be perfect and in an instant, literally, it's changed forever. Our life will never be what it was and that's ok, I wouldn't change if they told me I could tomorrow, but as the journey continues and as I hit birthdays and anniversaries and "last year at this times"  I realize I am grieving. I am grieving for all that my boy has been through, for all that I went through last year being alone and separated from everyone I love. I am grieving for those who have lost the battle and for all of us still fighting it.   I am grieving because this journey is far from over.  Oh' he has another open heart surgery a year from now and I can't even let myself go there because he will get it then. He will be the little Spanish boy that was his neighbor who I bought and snuck Dora toys to (I wasn't allowed to give him anything because he wasn't mine).  His crib was literally a jail so he didn't crawl out and he just laid there, fully conscious of all that was going on around him. He wasn't a baby. He got it and he was sad and my heart broke for him and for my son who will be him. I held his hand through the slats because he was alone, all day, and no child should endure that alone.  Come hell or high water, Paxton never will be.
There are victories here, this I know. I have not lost sight of that, but today, this week is highly, highly emotional.  I know the journey now, then I did not and it was heart wrenching, every second of the day for two months was heart wrenching and again 4 months later.  Today I cry.  I cry all the hot tears of this past year. I am getting them out now, so that by weeks end I can cry tears of joy. Tears of victory. Tears of HE DID IT! He made it! He rocked it! And he is mine!
Today, I am "full up" of life and love and fear and sorrow. Tomorrow I will try again.  That is what it's all about.  I may fall down, but I always get back up.

“Courage does not always roar. sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow" 


- Mary Anne Radmacher


Heart Hugs~
J

Sunday, October 3, 2010

Love Me Some Octoberrrr!

Fall is in the air and this weekend was a.m.a.z.i.n.g!

Beginning with my loves starting soccer for the first time ever!

It was epic for me!  Getting them all geared up, packing the cooler full of snacks, loading the oh' so appropriate mini with balls and lawn chairs.  Been waiting all the days of my life to be a soccer mom and well, here it is.  They pretty much rocked it!

Or....not so much.








It did in fact take awhile for the boys to man up... but by the end, they ran some and represented. Of course we sponsored the team and we are lovin' the name! Yayyy!



Thursdays practice was awesome. We know there will be more of those days in the future and sooo enjoy seeing the boys rocking it when they do...



( I personally love the tongue of concentration, no idea where he got that from ; )






And in other news...

Mama turned thirty-freaking-one!   


I have been wicked nostalgic lately because last year at this time I was just days away from delivering Paxton.  I was days away from the most surreal, life changing time in my life.  I was full of the most fear and terror I have ever known as I felt him kick inside my belly seemingly perfect, yet filled to the brim with angst wondering if my baby boy would survive.
Oh' time.  It continually fascinates me. Scares me. Excites me.  It's been a year since this...

It's been a year since celebrating my birthday quietly at home with my loves. If you could crawl inside me in this picture, you would feel a knot consuming me. I was preparing to leave my loves for what would wind up being two months, little did I know here. I was devastated beyond measure.  I was, in fact, leaving my whole world behind and headed into an unknown so scary it rocked me. Still rocks me when I allow myself to go there. I never forget all of those feelings.  They have yet to dissipate and time and dates and birthdays bring it all right back to the surface.

But now. Now I have this....




The most amazing, perfect, awesome rock star of a little boy.  When I say I am obsessed, I mean I am o.b.s.e.s.s.e.d. with this child. Oh' the love that fills me up...

One year later, I am wishing with all of my heart at the surprise party thrown for me...


Surrounded by the best of friends.  Friends who literally carried me through this past year...








Ahh yes... time is bittersweet.  All I can wonder is where will we be next year at this time....

Big hugs and thank you's to each and every one of my dear friends who made my birthday what it was this year.  My heart was overflowing.  It is each one of you that has lifted me up these last twelve months.
So blessed.
Just so blessed.

Cheers to another miraculous year ahead.

Love~
J

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