A Mother's Prayer
What does it feel like to have faith in and to pray to a God who heals while raising a child born with an incurable, progressive, life-limiting illness?
I think it feels like this:
Read MoreOutcomes
OUTCOME - noun - the way a thing turns out; a consequence.
We have finally concluded our lemonade stands for 2024! And although we had much fewer stand hosts this year, I'm so pleased to announce that thanks to so many generous donors, some of which donated large amounts anonymously, Write With Light Project will be donating ...
Read MoreHosanna in the Highest
It feels like I just made a blog post celebrating Sunley’s 5th birthday, but here we are a whole year later and she is turning six! Toddler days are long behind us — we have a little girl now, itching to be older and in charge of the world. The week leading up to her birthday closes a months-long resurgence of memories and feelings, heavy with conflicting emotions. This week is my own weird version of a Holy Week, because
Read MoreJustice
We had a quick trip to Houston last week to revisit some ENT issues with Ruger, and to see our friends, the Blankenships. Oliver, their son and Sunley's first heart buddy, just celebrated one year with his transplanted heart. If you have followed Sunley’s story for any time at all, you have definitely heard about Oliver and Ivy (Ivy has her Fontan coming up this year sometime). Our reunion was as beautiful as ever – to see them in their fresh start new house, and to be able to wrap my arms around both of those boys, and their parents. What a gift. As with any trip to the hospital, however, I came back with echoes in my head and a heaviness on…
Read More1 year post Fontan Check Up
We try hard to make these trips to Houston fun for Sunley and for the siblings left at home. I left our three heart-healthy kiddos with a super fun babysitter and a freezer full of yummy (junk) food, and we booked a hotel in Houston that has a pool, which was Sunley’s only request. We got to the hospital around 10:30 am Tuesday morning, and we were hoping to run into our buddy, Oliver, who also had appointments that day, but unfortunately the timing never worked out with their down time between doctor visits. Sunley was very nervous about the “big stickers” that are applied during…
Read MoreUpcoming Check Up
Sunley has a check up next week in Houston, and while we expect good news, Derek and I both can't help but brace ourselves every time. Strangely, it's not the same emotion as worry. We are just "girded," for lack of a better term; Armed in case of battle. Please pray with us that there are…
Read MoreLook 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…
Read MoreHow Far I Would Walk
I think about the story of Jairus in Matthew 9, Mark 5, and Luke 8 pretty often. I see it differently now than I did years ago. I’ve done the whole pleading-with-God-for-the-life-of-my-daughter thing. I know the type of yearning and begging that arises out of the deepest depths of a parent’s soul. Physically, it feels like it begins in your gut — it’s nauseating, actually. I know the simultaneous faith and frustration: Knowing Jesus could heal her if you could only…
Read MoreThree Months Post Op
To avoid any unnecessary drama, I'd like to preface this post with the following sentence: I do NOT have cancer.
We spent most of Tuesday at Texas Children's, and most of Wednesday at MD Anderson.
Medical updates first:
Sunley gets to be DONE with her fluid restriction! We are so happy to not have to measure every single liquid, as this has included things like ice cream, spaghetti sauce, smoothies, and Sunley's favorite: Pho. Her chest x-ray was clear, and her echo looked good. She developed some collaterals about 3 weeks post op that are still there, around her descending aorta, but they are not currently causing any issues that we can see.
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