Sunday, September 12, 2010

I DON'T want to...

As I am racing around the house today, doing laundry, cleaning, getting ready for my in-laws to come and stay with us for a week to help with Sierra (thank you, by the way!), paying bills, and basically doing any other activity to keep my mind occupied and not thinking about tomorrow, this phrase keeps running through my mind...

I DON'T WANT TO send my sweet innocent happy little boy into surgery again.
I DON'T WANT TO kiss him goodbye as the anesthesiologist wheels him down the hall behind doors I'm not allowed behind.
I DON'T WANT TO pace the halls of the CTICU Parent Pod waiting for an update, any update on how our little fighter is doing.
I DON'T WANT TO see our little man, again on a ventilator, with chest tubes and central lines.
I DON'T WANT TO wait for the results of hourly blood gasses to tell me whether our little man is continuing to beat the odds yet again.
I DON'T WANT TO look at his sweet little face full of the pain and pressure of the dreaded "Glenn Headaches."
I DON'T WANT TO leave my sweet little girl at home again for an indeterminate amount of time while I sit at Bodie's bedside.
I DON'T WANT TO have to choose between my children again.

So I stand, stomp my foot and say I DON'T WANT TO. I DON'T WANT TO. I DON'T WANT TO.

And then I realize I sound an awful lot like a temper-tantrum throwing 3 year old. (As luck would have it, I am very well versed in exactly what that sounds like these days!) And I am reminded that as Sierra brings her temper tantrums to me because she cannot understand why I am guiding her a certain way, I am bringing my temper tantrums to my heavenly father, because I cannot understand why he is guiding my family a certain way. God loves us with a perfect love that we, as humans, cannot even begin to fathom. We love Bodie with an imperfect love, but God loves us with an unbelievably perfect love. And I am reminded that when we decided last October to give our child life, we knew this path wouldn't be easy. God never promised us an easy journey, only that He would be with us every step of the way. THIS is the journey he has chosen for our child, for our family. And tomorrow's surgery is the next step in that journey. God has brought us to Children's and to Dr. Starnes - and we know tomorrow when we hand our child over again, God will also be in that operating room. Our task, as parents, is to walk this path with as much grace, dignity and trust in Him as we can muster. And I am reminded of our constant prayers when we first found out about Bodie's diagnosis.

"Lord, please use this child for your good. Give us peace and use this child's journey to honor you and bring others to you. Our greatest prayer is that you would be glorified through our lives and the life of this child."

As we stand on the precipice of the next step of this journey, we are again praying for peace and that God would be glorified through our son. Please join us in praying for both of those things tomorrow.


  1. My dear Amy and Dusk. Michael and I are praying for you! We are praying for my Bodie, for his friends Zoe and Townes, and for sweet Sierra. I understand your "I don't want to"... cause frankly, I don't either! And I am not Bodie's mother... please know that to some degree I share your feelings and pray alongside with you and many others for my Bodie's smooth recovery after a smooth surgery... and ultimately for his GREAT, LONG life ahead. I love him deeply! God Bless You. Love: Nairi and family

  2. I know exactly how you feel Amy. I couldn't wait for Aly's Glenn to be scheduled, but once the time actually came I didn't want to AT ALL either. :( Life is so different and so much better after the Glenn. Just think, by this time tomorrow, Bodie will probably be all done and on his road to recovery. Keeping you in our thoughts and prayers for tomorrow.
    Heart hugs,

  3. Praying for all of you as you head into your next journey...the Glenn. I will be thinking and praying for all of you tomorrow.

  4. I will be lifting up prayers for all involved -- most especially one handsome little Bodie -- tomorrow morning at 7AM EST! That's 4AM your time... consider yourselves bathed in prayer before your feet hit the floor!

    I know EXACTLY how you're feeling and just remember -- this journey IS doable! Definitely not easy, but doable. It'll be hard to hand your precious little one over for round 2, but my prayers for you will be that this journey pales in comparison to round 1! We were in and out in a week, which is what I heard to be the "norm" (as much as you can have a norm with our sweet heart babies). Just be sure to tell your stubborn little fighter that we're not interested in him showing off this time around. We know he's strong and a super-awesome fighter and that God has an incredible plan for him... no need to catch every virus floating around the hospital to prove himself!

    God bless and I'm sending oodles of heart hugs to you all!!!

  5. We have been and will be praying for all 4 of you. I feel like I'll be pacing all day. We love you guys! Love, Erin

  6. Amy,
    We're here rooting you on. I completely understand what you're going through but I can say that life on this side of the Glenn has been much easier and our babies really tend to flourish. Praying for all of you today and every day.

  7. Dearest Amy,

    For every moment that you think, "I don't want to!" there is also a moment when your heart screams "I DO want healing and health for my son." Focus on the things that you do want for Bodie and that will help make today bearable.

    I know I don't need to preach to you about what it feels like to turn your child over to doctors, surgeons, and nurses (you've done it more than me), but just remember that this is a necessary step in the story of Bodie and the story of you too. Your little boy will feel the love and pride you have for him even from that waiting room! And that, more than anything, will provide him and the doctors with the strength they need to achieve success.

    Your son is a miracle. Your son is strong. Your son is being upheld in prayer all over the world...and God will listen! I will be thinking of and praying for you often today. As always, remember, miracles happen!!!

    Sara Bollinger

  8. We send extra love and prayers for your family. God is listening and loving on you...just as you love Sierra. Your family is amazing - love for God, life, and others. A true testimony. I pray for extra grace for each of you. Love, Bonnie & the Kerrs

  9. So beautifully stated, Amy. I can so relate to your every word and it takes me back to that day before Grace's glenn. So scary. But God has been so good to us and gave us these beautiful children that are touching lives everywhere. The Lord has something special in store for them. And we have the honor of being their parents, and what an honor it is. Sure, life may not be how we imagined and yes, our heart breaks when we see them hurt or struggle. But the Lord is good and gives us a peace that surpases all understanding and the strength to be parents of a very special heart baby. We are praying for you and look forward to meeting you soon. Mike, Sherry & Grace Dunn Heart Hugs to you all!

  10. My wife and I pray for your little angel and all children with CHD. Be strong!Read about my daughter's story in

  11. Was a beautiful page. Thanks to the designers and managers...