I’ve always loved exploring. I remember driving in loops through my small town for hours in high school, totally lost in my own daydreams. For how much I drive, I should be much better at directions. I somehow maintained my ability to completely drift into my imagination from childhood all the way into adulthood. It probably makes me a little odd. But it also makes it easier to fall into deep prayer time with the Lord…so we’ll call it a gift…
Read MoreAnother trip to Texas Children's in the books! We left Haddie, Ruger, and Davis with Derek's parents to take Sunley to Houston for an echo, X-ray, holter, and consultation with her cardiologist…
Read MoreWhat 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 MoreYou are mine.
At my core, this is the fullness of who I am to Him. And those three words give me more depth than any role I could ever serve.
Last month, I couldn’t find my journal. I have a new one I started in 2024, but this one is the one I kept from 2011-2023. It is thick and bound in ornate green leather — a wedding gift from my grandmother. It has entries from the first years of marriage and motherhood, from several moves and big changes. And it has every poem, song, and journal entry from our hospital years with Sunley — prayers and writings that were too raw and personal for the blog.
And I lost it…
Read MoreOUTCOME - 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 MoreI'm mad at the mountains. What usually fills me with wonder and praise now looks like something I'd love to see destroyed. Not really – they're still pretty beautiful. But anger and wonder can coexist. Suffering and delight. Grief and joy. So I can love looking at these mountains and still be mad at them.
Kind of like how a mother feels when her kid is bullied, and she wants to punch the bully in the face – that's kind of how I feel about the Rocky Mountains. We'll call it my “Rocky Rage.” They are beautiful, but they betrayed my kid, so I kind of want to drive up there with a front loader, and stone by stone tear…
Read MoreI am well acquainted now with letting go. I hold all things that I can touch very loosely. When Sunley received her fetal diagnosis of a very rare version of Hypoplastic Right Heart Syndrome, it felt like I had to give up nearly every tangible thing I had built. We left my hometown, sold our very funky midcentury modern house that I loved, and I abruptly quit my dream job as a traveling wedding photographer. Our older kids had to live with my parents in Midland for about 10 months, occasionally bouncing around to different relatives, while Derek and I did the hospital thing in Houston. We rarely were able to attend church that year. We gave away our family dog. We watched our tiny baby — and so many other babies — suffer and fight so hard just to keep their hearts beating.
We let go…
Read MoreIt 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 MoreAnother great check up in the books for Sunley Summit! This trip had 3 days of tests and check ups in Houston, and Sunley was such a trooper. We try to make the trip special. I like to say “We put the fun in Fontan,” and I'm still waiting for the Fontan Go Clinic to adopt this slogan because I think it's fantastic.
We left last Sunday and spent the night with the Blankenships. It's always good to…
Read MoreWe 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…
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