This is not ok with me.  It is what I saw first thing this morning when I walked out the doors of ACH.  The hospital was being decorated for Christmas and it struck me so strongly it took my breath away. Whether Pax and I are here or not, there will be others that will be spending the holiday in the hospital and it just isn't fair.  These babies, these innocent children do not deserve this and yet it's real life.  If Paxton were here then so too would I be.  You just do it when it's your baby, but that's not to say seeing this as the sun was rising over the horizon first thing this morning didn't sting like hell.  It is after all, a harsh reality for many.


So last nights post was hard.  I wasn't sure if I should post it at all, but I pride myself on this blog being "real".  I don't paint pretty pictures if it's not pretty. I want to remember this journey in all of it's glory. The good, the bad, the ugly. So that I can look back and read the posts knowing and remembering exactly how I was feeling at that moment. Then when I do that I can bow my head and say to myself: "You did it. When you thought you couldn't, you just did." 

I often go back over last years posts. They were real and oh' so raw,  but when I read them now I am glad I was raw because this is about the victories and you don't get the victories without the struggle and the fight.  

So I posted the post knowing in the end I was being true to myself and to HLHS because it isn't always easy.  Today, I opened my email to find the most amazing letter from another heart family to me.  The words he enclosed in that email are words I will return to when I am down.  When I feel alone. When I feel that no one "gets it".  

I realized today that while I started this blog long ago without ever caring whether anyone read it or not, I am now glad that some people do, because it brings people together, people from far across the country enduring the same struggles.  Pax has a way of doing that. These heart babies have a way of doing that. 
Thank you to my new California family for taking the time to reach out across the miles, you'll never know how you lifted me up as I sit here in the hospital with my boy.

I mean really, look at all he's been through and look at how he handles it.  If only I was this strong.  He's my hero, always will be.


We are still admitted at least until tomorrow. They have some more tests to run and he's in a halter monitor for 24 hours to monitor his rhythm.  I've decided I'll post the outcome once we have one. Right now there's a lot up in the air and I could type a lot, but what matters is the end result.  Hopefully I will be able to post very soon that we are home once again preparing for the holidays.  We got one really awesome day in there on our two day jaunt home where we were able to pick out and decorate our Christmas tree

So for now, I am just going to go snuggle up with the man of the hour, or day or couple of weeks ; )

and pray that we bust outta here tomorrow because I have other little ones at home desperate for their Mommy I hear.  Oh how my heart bursts with love for them.  Just thinking of them right now brings tears to my eyes because all I want to be doing right now is playing in the backyard with them watching the sun set.

"Soon Mommy. Soon"



cici said…
Thank you for letting us know things are improving.Paxton looks mighty fine in the pictures!
Your boys at home, grow stronger every time you are away and appreciate you that much more when you are home again.
I will Pray that tomorrow you can bust outta there and enjoy the Holidays the way they should be, TOGETHER!
{{big heart hugs}}}
Jenn your post today broke my heart. You are so right its not fair that these poor innocent babies have to spend the holidays in the hospital fighting for their lives. My baby will be one of those. While it is heartbreaking its very worth it and I have faith that we will have many more holidays spent at home being happy as a family!

I hope that Paxton gets well soon so you can be back home with your whole family! Your little Paxton is such an inspiration! Big heart hugs!
Neha said…
He IS a hero. Look at him smile while he endures all the pain. Love him so much!

And I am sure you both will be back home soon and will celebrate Christmas a one complete happy family.

Lots of love and prayers!
Jamie Kubeczka said…
I am hoping and praying over here that things get better and you guys get to head back home and all be together. I am sure he is ready to get home to his brothers.

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