Friday, January 28, 2011

Hope comes in all sizes

The night Wyatt died, Dusk and I prayed, like so many nights before, for Jillian and Lucas. But our prayer was for peace, and for comfort. After prayer time, Sierra asked "daddy, where is Wyatt? Did he go to jail?" (we had been discussing jail earlier in the evening, so I'm guessing that's why it was on her mind.) Dusk replied "no sweetie, he went to be with Jesus in Heaven." There was the briefest of pauses while Sierra processed it and then said, so full of innocent sweetness and concern "but then his mama can't see him anymore."

Oh my heart has been heavy this week and that statement just encapsulates it. My heart is beyond heavy for Jillian and Lucas. My heart is heavy for the 6 other parents who lost babies to HLHS this past week (yes, you read that right, 6 - and those are just the ones I know about on Facebook - it has been a rough week indeed for the HLHS community). My heart is heavy for sweet 3 year old siblings (of whom I know 5 personally), who have had to grow up too soon and ask questions about why babies go to Heaven. Yes, my heart has been heavy.

But, like every other dark time in my life, God has nudged me and reminded me that HE alone can give me HOPE. Ah, blessed hope. Nothing more beautiful and powerful than HOPE.

God gives us HOPE of a life beyond this one far sweeter than we can possibly fathom. He sent His son to die for us, and if we will only believe in Jesus, we will be saved, and are promised an eternity. What sweet HOPE that is - no matter how hard things get on this earth, it is only temporary. No matter how excrutiating it is to lose loved ones on this earth, thankfully we have the promise that our separation is only temporary and a fraction of the time we will spend together in Heaven. How do I get through weeks like this week? By remembering that. By knowing that, even though Bodie is fragile, and his time with us may very well be limited like the 7 sweet babies who passed this week, we will spend forever with him in God's kingdom.

I am only human, and my heart breaks here on earth, for the babies lost, for their parents with empty arms, for my sweet boy and what each loss means for his future, for his sister, who has to ask questions no 3 year old should even have to think about. But I know in my heart and in my mind that God's promises are greater than all this. And so I carry on, buoyed by that promise and our great HOPE for the life after this one.

As for the here and now, God also brought me hope in a very tangible way this week. He brought Kenny Castano into our lives. I had met Kenny through Facebook (the Facebook CHD community is very tight), but actually had the opportunity to meet him in person. Kenny is a 22 year old HLHS survivor (yes, you read that right - he is one of the oldest living HLHS survivors!) who is doing incredible. He has undergone the 3-stage palliative surgeries and a pacemaker (5 years ago), and is doing great. He's on minimal meds, has not needed a transplant and is just, well, normal. Blessed normal. (Unless you're a heart parent, you don't understand how beautiful that word is.) He is going to be working as a CNA shortly and is active, energetic and loving life. He happened to be in Southern California and stopped by for a visit with his incredibly nice dad and his brother. Thank you so much Kenny!!! We had the opportunity to have Townes (Bodie's HLHS buddy) and his family over at the same time and snapped some great pictures. Here are some pics of our HOPE for today and tomorrow:

Absolute miracles: Townes (2), Kenny (22), Bodie (11 months) - 3 ventricles among them! :-)

From one miracle to another...
Our little half-hearted wonder boys:
Sara and I with our broken-hearted miracles:

I needed HOPE this week and God brought it to me in spades. He quietly reminded me of the HOPE He alone can provide, for an incredible life after this one. He brought Kenny to us, to give me HOPE for 20 years down the road, the thought that kids with this diagnosis DO succeed and live happy, healthy lives. And He reminded me that he brought Townes into our lives, to give us HOPE for 2 weeks, 2 months, 2 years down the road, hope for our immediate future with Bodie. We're so grateful for this HOPE and for all of the blessings He has put in our lives. :-)


  1. What a wonderful post Amy! I absolutely ADORE the picture of Townes and Bodie where it looks like Bodie is telling a secret and Townes face says they are up to no good. ;) How wonderful that you all got to meet Kenny in person!
    It has been a very very rough week for our CHD family. My heart is also heavy. My thoughts and prayers go out to all of these families who have experienced such a great loss.

  2. The CHD community has been hit hard this week and the loss is heart breaking. It tears at me when we have a week like this and I feel like the tears will never end.

    I am so happy you got to meet Kenny. He is an inspiration to us all.

  3. Thanks for sharing your visit with Kenny and for giving us all some HOPE this week, as it has been extremely rough. These three boys are truly amazing!

  4. You are so beautiful Amy and your words shed such light on how to walk that aching, grief-filled path of loss. I repeatedly thank God for you! Love, Karen and all of the Babyline Prayer Partners