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…
Read MoreUpcoming Christmas time is always bittersweet for me. I think maybe when you live in the reality of complex medical mothering, you feel an added pressure to make every holiday extra special. I feel myself rebelling against this, mostly; To be honest, even before Sunley, I wasn’t a huge fan of the…
Read MoreWe 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 MoreSunley 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 More“Only twenty percent of babies born with this heart condition live to the age of one year, and most will die by age four” was the quote from the internet that made it all real in 2018. This was actually happening…
Read MoreI need to go to the ocean
And maybe the sea needs me back
I need to walk on sandy footing
Where stronger steps have tracked
To see the power of the waves
And feel a current where nothing stays
I need to go to the ocean
And hear song of something more
To see the line of a horizon
And heal the wounds that still are sore
To feel my feet begin to sink
Beneath a world made for leaving
And my lids begin to close
Over eyes meant for seeing…
Read MoreOne year today since the Fontan. A year full of pink lips, Jiu Jitsu classes, lemonade stands, and lots and lots of ordinary days, which sparkle the brightest. We prepared for this surgery since well before Sunley was born, and that lead up didn't wear off immediately. We chose the surgical path for our unborn baby a month before she was born, knowing that we could get 3 or 4 years in and then have a failed Fontan. It’s a huge leap of faith that we made with the guidance of the most experienced doctors in the country. And it was either that (surgeries) or let her go. And I have to say, even if her Fontan had failed and she had passed away, I would still have been glad we made this choice. That’s a very deep and extensive topic that I won’t hash out right now. The whole experience changed my life in so many amazing ways. The enemy tried to shake me up and even break me, but what he didn’t know is that I’m a freaking glow stick…
Read MoreLook 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 MoreAny time I have a period of silence on the blog, you can guess I'm in a period of "stretching" in some form. It's been a weird few months. We've had great highs and great lows. Over the past year, we watched 9 heart buddies pass away, all under the age of six. But we've also seen great victories, and in between all of that, had many moments of normalcy for our…
Read Morehard time getting things done this week. Ruger is over whatever virus(es) had him so sick, but unfortunately his asthma medication is causing a lot of problems — So we are working on figuring all of that out, and it has been very stressful (that sentence is packed with a lot of backstory and stress that I won’t get into). I woke up Monday with total laryngitis, so we decided that I should stay home while Derek took Sunley to her Houston check up…
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