Being a medical mom is something I’m still learning how to carry. There are so many moving parts…medications to remember, appointments to keep, daily care routines that feel more like medical procedures than typical parenting, and traumatic medical memories that resurface. Some days I feel confident and capable, and other days it all feels overwhelming.

 
I haven’t really talked about this before, but when Willow was 1 day old she stopped breathing. She had her closure surgery that morning, and easily came off of the ventilator post-op. We didn’t know this until the next morning, but the night of her surgery she completely stopped breathing. The nurses had to intervene, and it took a while to get her breathing again. I’ve honestly tried to block this memory, because it terrifies me how close we came to losing her. 

Another thing that has been on my mind a lot lately is that I don’t want people to see her scar in public. Willow’s closure site isn’t huge, but it isn’t small. And it looks scary to someone seeing it for the first time. 

Chris and I have felt especially stressed this week. Thinking through the cost and logistics of making our home accessible has felt paralyzing (ironic, right?). There’s just so much to figure out, and it adds a whole new layer of stress on top of everything else. We’re doing our best to take it one step at a time, but some days it’s just a lot. This week alone, we’ve been quoted around $50,000 in repairs or modifications to make our home safe and accessible for Willow. 

In the middle of it all, I’m learning that these are the heavy and holy moments. The ones that stretch me, humble me, and remind me how deeply we are loved by God. He carries us in His grace, even in the hardest parts. 

These things are evidence of God’s hand at work in Willow’s life. He made her breathe again! And He grew extra tissue around her opening to give her the beautiful closure scar that she has. He provided this home, knowing what needs were down the road. And He has provided every one of these donations and a support team (YOU!) to help us. 

Sometimes remembering the hard moments points to the holy ones. 

We wouldn’t even be at this point in our journey if it wasn’t for each of you. Thank you so much for your support, financial and emotional, as we learn as a family what it means to provide well for our girl. We are truly grateful! 

If you’ve been following along, we’d love if you would continue sharing #TeamWillow so more people can walk this journey with us. Sharing this post helps us reach others who may want to support or follow Willow’s journey.