It's Time


Well, the time has come to pack up my monkey and take him to Tampa for his cath to get an up close and personal look at his heart.  This will determine whether his heart is strong enough to make it through his next open heart surgery. They will put my little man under anesthesia and lead a camera up through his groin to see his beautiful half a heart.  I am nervous. I am scared.  While this is nothing compared to five hours of open heart surgery, it is  always something when you only have half a heart.  
I don't know what to make of it all except to keep moving. I feel like it's all happening to fast.  I am ready. I am not ready. I don't want to sit there and listen to all the risks tomorrow, I know them.  I don't want to hand my baby over with zero control of the outcome. I don't want that feeling in the pit of my stomach while I sit and wait for word that he made it out of anesthesia. I am scared to hear the results of the cath.  I am scared of it all. It's so much harder this time around knowing what to expect. Knowing what I will see. Ignorance was bliss when he was born. I was thrust into it so quickly I never had time to wrap my head around it all, but now. Now I know.  I am praying they can get and keep an i.v. in without having to stick him 10 times like they had to last time over and over. I am praying his heart is as strong as it seems. I am praying these next few days whiz by in a blur.  I want to be on the other side of this month. If I am like this for the cath, imagine when his open heart surgery day arrives.  Can't even go there right now.  
So, what I will do is just pray. Center myself and love him.  Will you all join me in praying for my son as he heads into another one of the hardest months of his life.  Pray for him to be ok. Pray for his heart to be strong. Pray for his peace.  
I will be updating via twitter which also updates facebook.  Twitter is on my left side bar in the black box for those who are not on facebook.  I never thought I would be a technology crazed person, but it really is amazing how technology allows me to keep all our friends and family updated on our boys progress.  So updating I will do as I watch the hands on the clock tick ever so slowly.  
 I learned of this poem through a friend that has a special needs baby herself and man is it accurate.  Read it and let it soak in. It's so very, very true and for all those readers that stop by who have special needs baby's I would love to hear your thoughts on it.  It resonates so deeply with me.  
Life doesn't give us more than we can handle.  So far so good, most days.  As we head into the next month I must remember this.  I will try not to panic and breathe deeply knowing my son will be ok.  He is and has been from day one, my little fighter. Please dear friends, lift my baby boy up in prayer Wednesday morning as he heads to surgery. If you have a moment leave a comment. I will keep them all tucked away until I am sitting at some random table in some random hospital trying to keep it all together and then and only then will I read the comments those of you choose to leave. They will be the glue that keeps me together until I can hold him in my arms again. 


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Comments

I will pray, and pray, and pray some more!!!
Christin said…
I loved the poem. I myself don't have a special needs child. But my sister is mentaly disabled. I help take care of her, and when the day comes, she will come and live with our family. So I sort of understand what it is like, from a different point of view. But the poem is beautiful, and I will be passing it on to my mother. I have not stoped praying for your little paxton, but will be sure to say a few extra on these coming days. God Bless.
Gretchen said…
Jenn, I will be praying for all of you!!

As a mom to a special needs child I LOVE that peom.. it has always spoken to my heart!

If you need some distraction head on over and check out my darling children on my blog... www.simplysoares.blogspot.com

Hope all is well for all of you!
Dana said…
Thinking of u and praying for pax every night! Xoxo
Jamie Kubeczka said…
I'm praying for Paxton and hoping everything goes perfectly.
Kaylan said…
Oh how I have been praying for you during the time leading up to these days! I pray that the Lord will hold you in His hands until you are able to hold your baby boy. I pray that He will guide the doctors' hands and help them to know the best treatment for Paxton. I pray that his heart is doing just what it should be and that he recovers well from anesthesia and surgery. I pray that you and your other boys will be comforted and peaceful during the time that Paxton is away from you. I cannot wait to hear the updates. I'll be praying.
Kristen Birmingham said…
Jenn & Family - I've written before - Terrilyn is our photographer too when we visit my parents in Naples. We are praying for Paxton and your entire family. Good luck in Tampa today :)

Kristen Birmingham
Lorena M said…
He's so precious. I will be praying that you get good news from his cath as to whether to move forward with no surprises. We always tell the parents we hope for a boring cath, that means everything goes as planned and they have a speedy recovery. Prayers from California, Lorena Mora
Jenn,
Paxton is always in our prayers and we will be praying especially hard for him on Wednesday! He is a tough little guy and will do wonderfully! Stay strong as you always do. Remember that God is with him!

Love: Zach, Danielle & Kian
Unknown said…
Dear Jenny,

Your site says it all. You have said it all. TRUST GOD..HE Hears all Prayers..You are in Gods Hands, Paxton is an Angel in Gods Hands...TRUST GOD..

Love You and Your Family,

Bobby and Edith

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