Look What He Has Done

Look what He has done.

Last month, we took the whole family on a trip to Houston specifically so the kids could be part of the delivery of the check from last year’s first annual fundraiser. Thanks to all of our selfless donors and lemonade stand hosts, we were able to write a check to the Fontan Go program for $32,410.94!

(If you’d like to sign up to host a stand this year, or if you’d like to make a donation, click here)

We were able to sit down with one of the doctors in charge of the program, Dr. Weigand, and our conversation was so incredibly encouraging. We were so impressed with the progress they’ve already made in the program, but mostly we were impressed by the passion that these people have for such a small population of people. It feels good to feel seen. There really is no telling how far Fontan care will go in the next decade, and we will get to witness it all. The life expectancy of these kids seems to be increasing all the time.

After our visit with Dr. Weigand, we got to see lots of familiar faces and give lots of hugs, while the kids took approximately 4,367 photos of the fish in the third floor tank.

Coincidentally, I have been asked twice in the last couple weeks, “Do you think God will heal her?” Both times, I couldn’t help but smile when I said, “No, I don’t think so.” I fumbled through an explanation of why I don’t focus on healing anymore. I’ve reflected on my answers each time, both feeling insufficient, and this is what I wish I had said:

Friend, do you not see what He has done, and is it not much more lasting than healing? I would love it if He healed Sunley. I know He could heal her. And if He did, I would never speak of anything else. But I don’t need Him to heal her in this life. I don’t know what He is doing, but can see the goodness in it. I have completely let go of my definition of physical healing, and I see with so much more depth than I did when I was praying for physical healing, before she was born. He could have healed her, but instead he gave her a race sprinkled with suffering, and gave each of us who love her a unique perspective of our own suffering as we’ve joined her journey.

So many people would hear this and think that I’ve settled or given up. It’s so challenging to put into words that I have certainly not settled, but yes, I have given up. I gave up words like “normal,” and gave up my view of what a good quality of life is. I gave up my expectations of what I deserved, and gave up most aspects of my passion for travel and photography as a career. I gave up my house and hometown, and gave up control. I gave up “healing” for “hallelujah.” And look at what He has done.

There is nothing wrong with anyone asking Him for healing, of course, but my focus is no longer on this world, and it hasn’t been for a very long time. A better life is coming, and things will continue to break until then. From July to January, we watched nine single ventricle heart kids move on, all under the age of six. Out of the 7+ single ventricle friends who had Fontan procedures this year, only four have been successful — and those four are not promised to last past our next check ups. All of those deaths or disappointing outcomes were a mixture of gradual slipping away, to unsuccessful surgeries, to a couple that were totally shocking and completely random. Everything here breaks. And if all I prayed for was physical healing, then how short-lived my victory would be. Because here, everything breaks in time. How much better is it that I pray for joy? Or wisdom and contentment?

No, I will not focus on physical healing. I will pray for help and strength. I will pray for soul connections to uplift me and to last far past this life. I will continue to pray for a full life for all four of my babies, but I do not define full as long. I’ve already seen how brief can be beautiful. Look what He has done.