Letting Go

I 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…

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Hosanna in the Highest

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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

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Fun in Fontan

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Another 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…

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Justice

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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…

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Write With Light Project 2023

We are so happy to report that our nonprofit, Write With Light Project, raised $22,642.22 for the Fontan Go program this year! Grateful, humbled, totally in awe of everyone who advocates on behalf of our family — That is how we feel. Sunley will have her first appointment with the Fontan Go program in the Spring. In 2018, as we watched our beautiful newborn fight and fight and fight…

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1 year post Fontan Check Up

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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…

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