Updates - @amandaauer & @joshauer
My sweet, optimistic, adorable, curly haired cutie is sick you guys. I’ve actually never had a kid as sick as she is in my years yet parenting.
September 21st - I’ve taken her to the doctor and the diagnosis is to ride this out, but its unbearably brutal for this poor one here. She’s got snot stuck in her body and it’s failing to drain. She’s tired and lethargic. She’s moody and uncomfortable. She’s dry heaving like crazy just to get it out (to mostly no avail). We are taking all the precautions and all the directions of people who she is in care of to make sure she sees this run it’s course but she’s tired and I am tired.
September 23rd - In our second ER this weekend. Being transferred to CHOC for Rowen. They don’t know what is wrong yet so please, if you have been, keep praying. We need these doctors to have wisdom. We need guidance in how to advocate for her. We want answers and not band aids. We need logistics for our other children moving forward. Pray for all of that and whatever else the Lord leads you to. We’ll be with her overnight - both Josh and I by the grace of God and community.
It is an issue with her heart. It is critical. We are heading to CHOC ICU. I don’t know much more than that.
Endlessly moved by the flood of people who have connected and reached out in this space we keep.
We feel so loved and protected.
I honestly feel a gross amount of peace. I’m sure I shouldn’t with so much up in the air. But I can say “I believe that You are good” and mean it through my bones. Even still. Praying for full, miraculous, speedy healing that surprises the staff and physicians alike.
This is what it feels like - this mess of wires right here. It’s confusing and intimidating and I don’t understand it. We are overwhelmed. She is irritated and hurting and we can’t stop or change it. I laughed tonight that I still had to actively parent from a hospital bed because no still means no - you can’t have water; it’s not safe.
We are cracked apart by all of it. In disbelief for sure. Tonight is THE night. It decides much. Tonight we see what we are made of - what she is made of - what He is made of.
And if not... He is still good. I promise you He is. I sat stroking her hair tonight, sweaty on the side she laid from that hard working heart of hers that’s causing strain. I sat and felt assured. I felt confident. I felt like I knew my role.
If I believe in purpose - if I believe I’ve been created for specific things foreseen, then tonight is divine in my mind. It’s about me stepping up. Wading ankle deep into that river and watching God prove the promise He made me.
Not for a miracle - but gosh I hope. Not for physical recovery - but it’s what my soul sets on. Not even for understanding right now. But for peace that goes beyond the situation. For a God that sees me and sees Rowen and knows us both in our weakness and fear; that meets our needs in and through one another.
Tonight Rowen needed Jesus by her bedside. She was scared and overwhelmed and in pain. And I got to hold her hand, as His hand. And be His feet - for her. And I’m pretty sure it’s the moment for which I’ve been made.
When she was in the ER today her monitor kept beeping while she was laying on me - this is before we knew anything was serious - and I realized once I put my hand on her back, that it was like she was holding her breath. She would lay still - no movement or labor to her - and the monitor would start beeping shortly after. A few times I said quietly “Rowen?”, or tickled her back and up her quickened breath started once more. Looking back, it hurts my heart to think she was resting; resting from this fight in a way that only ends badly for us that want to keep her here. I wonder if in those moments she just felt too much: too tired, too struggled, too overworked, too ready for it to be done. And mostly I wonder how she found her way back to fight more and longer and harder than she has. For it all I am so so thankful.
Please continue to pray practically: she is uncomfortable with all the monitors and it’s emotional (because: toddler). We need help and wisdom navigating family logistics for us as her parents but also as the parents of 3 others (and Josh as a provider in a single income family - thankful for self employment’s power stepping in). And please pray I would remember to eat well - nourish myself and my body and remember to pump milk for my nursing baby. These hours fade quickly here and my body is suffering; I need the structure and discipline to keep it up.
September 24th - She had an emotionally charged night. She’s hooked up to so much stuff, she can’t really move very well. The hardest part is the catheter and IV port (?) in her groin area. It’s taped down. It’s hurting her. She complains often and she’s over tired since she only slept here and there. Having your child scream at you because you cannot meet her need - asking repeatedly for you to do this one thing - knowing you can’t do anything because she’s labeled “very fragile”.... there is nothing so helpless. .
It took 5 solid minutes to orchestrate her move to Josh’s lap in this chair. She wanted to be held - our “touch” girl. We cannot take away the pain in her leg (the IV or port or whatever is *stitched* in), but we were allowed to carefully cuddle. She fell asleep in his arms, in and out of contentment. Thankful in the big, thankful in the small. .
They did a repeat cheat x-ray this morning to check for progress. We are waiting on results. Her face swelling is going down. She’s made it through the night. She’s in good spirits at 6am. She really, really wants access and allowability for food and drink. Pray for progress in all arenas. Good results in all these areas. For favor from Him in her swift healing.
As tough to endure with the lack of sleep and screaming that accompanied, my gosh it’s good to see that she is still FIRE inside. And that is Him and His - in victory, all the way. I’m so proud.
- Berk Serpen
- Matt Concialdi
- Jane Liu
- Channy Leaneagh
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