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Fight with the Auers

$180,171 of $250,000 goal

Raised by 2,210 people in 2 months
Created September 24, 2018
Team Auer
on behalf of Joshua Auer
For those of you who know Amanda, you know her words always penetrate the heart, so in the words of Amanda from her Instagram posts (@amandaauer), here is their story so far.

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.
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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.
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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.
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It is an issue with her heart. It is critical. We are heading to CHOC ICU. I don’t know much more than that.
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Endlessly moved by the flood of people who have connected and reached out in this space we keep.
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We feel so loved and protected.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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UPDATE - October 31st - 6:30pm

Today has felt intense in the worst way. And not with Rowen - more like the decisions we are making on her behalf. As if being a parent isn’t hard enough. The forms we sign, what we say yes to, what we pursue... what we put into our own hands - it feel immense.
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We waited half the afternoon for a move to be made to propel us forward in any direction and the procedure we were awaiting was postponed to morning last-minute. An emergency with another patient. Probably happens all the time, but it feels personal. We prayed.
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The tides feel turned from our view of the hallway. Our hope seems to be contained mostly in our own room. Our faith, I always fear, seems silly when pushed against science. But as I told Josh today... this is what it’s supposed to look like.
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He doesn’t make any less miracles because those who doubt or deny are watching. In fact - how much more. Their eyes are on. We’ve said His name aloud and stood on the rock He provides. In public. And although I’ve bit my nails to nubs in my own anxious leaning, I rest in my confidence provided from Heaven alone; not humans here.
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Something our worship leader always sings is “There is no striving in your love”. It was a good Sunday reminder before, but now I feel the impact like a stunt dummy run into a brick wall. I don’t have to work for this miracle. It’s His to show and to share. Fifty thousand wide. I don’t have to make the right move or fill the right form or say the things that sound right. He will do it either way. He will do it anyway.
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It is where my security lies in all of this. It makes my YES more confident and my NO more convicted. As we prayerfully step forward ourselves on what we feel and find best for our family, we realize that with the world watching, we’re in a self driving car. It’s going whether we like it or not. It’s His. We are in it where ever we’d like to be: front seat with hands up. Passenger side belted in. Back seat spouting thoughts and feelings as we roll. Regardless of where, the car has its own driver. The One who knows the roads perfectly because He paved them. Designed them. And surely, He knows how to drive them.
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UPDATE - October 23rd - 11:30 am

Coolest kid sitting in the sunshine.
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Well - the draining hasn’t stopped so as we prep and pray for yet another procedure.... we ask that you’ll join as our doctors discern her care. There are still the same two options: cath lab or operating room. The goal is to try cath lab first and then - if needed - she will get to the OR to finish the job. This won’t happen today; they have to schedule switch and push patients to make Rowen a priority. The plan is tomorrow, first thing.
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Today consists of setting a schedule for our darling gal. It’s been a MONTH of feeling aimless and uprooted so we will amend things to make sure we have consistent nap time, play time, down time and work time. I’m thrilled on that end. I love me some structure and she needs to be able to anticipate her days.
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She’s being weaned off of more meds today and even her oxygen/nasal cannula - though if they go back into surgery and have to put it back we are going to ask that it isn’t removed and then put back on again. It’s quite daunting to her 3 year old heart. As much as she hates it, to have freedom from it and then regress is even harder, and it’s happened 3 times now.
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Please pray that her body would work well and heal. That the team makes the right calls and are swift to fix any issues. For a day filled with peace and rest. And for Josh and I to continually find - and fight for - her voice.
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UPDATE - October 23rd - 4 :30am

Realized something just now. I’m on hospital shift and I’ve been up gently running fingers through hair to stop the nervous fidget of blankets. As I whispered and prayed over my daughter I was reminded of who God is.
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I’ve been saying He loves His job - and I know He does. He is so good at being God. Consistent in character. But Jesus got Himself into hot water more than once healing on the sabbath. Because - it’s work. But it’s also not. Not to Him. Which means mercy wins each time.
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He doesn’t delight in suffering. He doesn’t prolong the pangs of pain. This has a reason beyond what I realize. And my daughter is not exempt from His love. Not exempt from His mighty hand of healing. It’s not too hard. It’s not too inconvenient.
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When the encounter is meant for - it will come to be. When the miracle is scheduled - in His holy time - it will come to pass. Resting tonight in that.
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UPDATE - October 22nd - 11:30pm

In case you’re wondering: that is 4 people pushing and/or pulling 4 things for one 3 year old’s joyful 30 minutes. That big blue and grey box - that’s her Berlin heart. She has a pump installed also but it’s connected to that. The box has a battery life of a half hour unplugged. Then it takes 6 hours to fully recharge. It’s serious business you guys. And the nurse pushing her IV pole is the same one that was on her helicopter ride here - part of the transport team.
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$180,171 of $250,000 goal

Raised by 2,210 people in 2 months
Created September 24, 2018
Team Auer
on behalf of Joshua Auer
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