The Road Goes Ever On

Nine days after her third heart surgery, our little “Wonder Woman” was discharged from the hospital.

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We celebrated that night with play time in our apartment and delicious local takeout for dinner, but the real celebration came the next afternoon when we arrived home and the girls were reunited. Watching their sweet hug was the best celebration of all!

Over the past almost two weeks, life has quickly settled back into it’s typical rhythm. And aside from the pinker-than-usual scar on her chest, I doubt most people would notice anything different about Hope.

I’m thankful for the normalcy and even more thankful for the success of another surgery and the optimism of Hope’s team regarding her progress.

And yet, in the days after our return, I felt a strange sort of let down.

As the initial excitement of being home faded, the post-hospital weariness set in. Those days at the hospital are challenging and exhausting, mentally, emotionally, and physically, and some of it doesn’t fully hit me until I’m home.

Even more so I found that the relief I’d felt over crossing another hurdle, while significant, was lessened by the knowledge that there is more to come.

While at the hospital, my focus was solely on helping Hope heal from surgery and be able to go home. But back at home I was reminded that life keeps moving on, and for Hope that means yet another surgery in the future. The truth is, she will always live with this. There’s no cure for heterotaxy, no ultimate fix that makes her heart completely whole.

The road goes ever on.

Those words, from The Fellowship of the Ring (J.R.R. Tolkien) stuck in my head as I thought about Hope’s journey. There has been so much to celebrate, and we do celebrate it with joy and thankfulness. But it’s a journey that stretches forward, with many unknowns still ahead.

Isn’t that true of all of us though?

It’s easier to see, perhaps, with Hope. Easier to dwell on the unknowns and uncertainties of life when I think of her. But truthfully every one of us lives our own journey, the path unknown to us no matter how much we plan or think we control.

There is only One who knows the beginning to the end, because He is the beginning and the end, the Alpha and Omega. And it’s because I know He loves me, and loves my little girl, that I can continue to step out onto the road stretched before us; leaning on Him for peace when I feel afraid, strength when I feel weary, and joy in all circumstances.

I’ve come back to this verse again and again, a reminder from the first moment we found out about Hope’s heart until today and to whatever may come:

The Lord is the one who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed. (Deuteronomy 31:8)

The road goes ever on and, as Bilbo said, “I must follow, if I can”. I know without a doubt that I can follow the road ahead because the Lord goes before me. And I pray that, as Hope grows, she will learn to trust Him as well, no matter where the road may lead.

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Thank you so much to everyone who prayed for Hope and our family during her surgery and hospital stay. We felt so encouraged and loved!

For those curious about the medical details… The surgeon was very pleased with what he was able to do and is optimistic that Hope will continue to be a candidate for a biventricular repair. He was able to patch most of the septal defects, though he left one area loosely covered as part of her heart’s electrical system was right where he would have needed to put a stitch and he didn’t want to damage that. He hopes that her own tissue will continue to grow and close that space. He was also able to work on her mitral valve and improve it, though there is still mild leaking to watch. He put a shunt in to continue to increase blood flow to the left side of her heart, hoping for further growth in the areas that are disproportionately smaller than the right. We will follow up, likely within the year, to assess progress and see if Hope is ready for the final stage of full biventricular conversion. This was a really big step for her and we are so thankful for the team of doctors and nurses who have cared for her along the way!