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

2 comments:

cici said...

Oh sweet Mom, how I wish I could take all that heartache away. I know there is noting anyone can say or even do to stop the thoughts and reminders you are having.
I do know from experience that every year that fear will get less and less.
I know exactly how your (tummy in a knot) feels from anxiety.
I hope your appetite comes back because it is important you stay strong for your boys.
You continue in my Prayers sweetheart.

Neha said...

I had tears in my eyes while reading this. You are a very strong person and you inspire me! Hold on and have faith. Paxton is a brave boy and he has the best mumma!

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