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 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 MoreI’ve lost track of the exact timing of everything, but for the past 2 weeks, our 3 youngest kiddos have been dealing with some kind of respiratory virus. Davis got over it pretty quickly, and mostly just had a runny nose. Sunley almost had to go to the hospital for low saturations and difficulty breathing, but she came through it without hospital support. Ruger has had a very hard time…
Read MoreI 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 MoreI have our final number! I am so beyond humbled and grateful to announce that our first year as a nonprofit raised…
Read MoreTo 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.
Read MoreWe have been home for nearly 2 weeks now! About 10 days or so before we left, I had a really out-of-the-blue opportunity to speak with Lauren Simonetti from Fox News on her podcast, “We’re Momming Today” about the nonprofit and about Sunley’s story (Link here, if you’d like to listen). Trying to condense my thoughts into 20 minutes was hard for me (if you know me then you know I can talk forever), but the whole experience was amazing. The fact that a New York reporter from Fox News would take the time to do that with me just absolutely blew my mind. I’m a stay at home, homeschooling mom of four — I do not have time to start a nonprofit, but I did it because I just knew I needed to lay some groundwork for God to do what He wants to do with this. And already, look what has happened! We have over 30 lemonade stands going up in 13 states now, we’ve sold hundreds of t-shirts and raised thousands of dollars to support a clinic that didn’t even exist 5 years ago. When will I stop forgetting to just let God take the lead? When amazing things like this happen, it makes me wonder how in the world I ever fall into old patterns of control and frustration. But we all do it. Thank goodness for fresh starts.
Read MoreI think I'm long overdue for a recap on Sunley's condition, and what exactly this Fontan procedure did for her – and what it means for her health in the future. The surgeries she has had are called “palliative.” That means that none of these cured or will cure her heart condition. No one has ever been able to give us a very accurate prognosis for her because there is very little data
Read MoreSweet new heart momma, I know. I know this is not the Mother's Day you wanted, because I too have spent this special day watching my newborn baby struggle to breathe. I know the weight of the diagnosis you've received is overwhelming because I too have been overwhelmed. I know the sounds your voice will make as you grieve because I have made them, and I know the way your whole body will shake because I have shaken.
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