Mad at the Mountains
I'm mad at the mountains. What usually fills me with wonder and praise now looks like something I'd love to see destroyed. Not really – they're still pretty beautiful. But anger and wonder can coexist. Suffering and delight. Grief and joy. So I can love looking at these mountains and still be mad at them.
Kind of like how a mother feels when her kid is bullied, and she wants to punch the bully in the face – that's kind of how I feel about the Rocky Mountains. We'll call it my “Rocky Rage.” They are beautiful, but they betrayed my kid, so I kind of want to drive up there with a front loader, and stone by stone tear them apart.
I don't like being told I can't do something. Neither does Sunley – so I understand where she's coming from. To preface this story, we did talk to Sunley's team before venturing into the mountains, and got the very typical answer of “Well, try it and let us know how it goes.” I'm grateful for this, because I don't want to limit her. As she grows, if she wants to try something, I want to help her try safely.
This “try” didn't work out, but that doesn't mean she can't go to the high mountains again – next time, we won't fly from 1100 to 10,000 in a matter of hours. Next time, we will get a prescription for oxygen before we arrive. And if next time never comes, and Sunley decides she doesn't want to push her limits anymore, then we will respect that, too. My battle that erupts inside me when someone or something limits her – that is not her battle to fight. Just because I want to prove them wrong, doesn't mean she has to feel that way. (Although if you’ve met her, you know she does this all on her own!)
We've spent the last few days in Breckenridge, Colorado, to celebrate my parents’ 40th anniversary – my parents, 3 sisters, their families, and my crew of 6. Twenty people in total – a small miracle that everyone was able to make this date work. This was arguably one of the most beautiful vacations I've been on, and it was so deeply good to spend time together as one big family unit.
We've known since before Sunley was born that trips to high altitude could potentially be a problem. In fact, that's partially why her middle name is Summit - kind of a big fist-shaking WATCH ME to the doctors from Dallas who told us she would never be able to hike or climb any mountains (also the name is a nod to Habakkuk 3:16-19, which God planted in my heart when I heard scary words for the first time). So we knew that staying in a cabin above the town at 10,000 ft elevation would be pushing it. We knew we might need to use oxygen. I was ready to watch her maybe be more tired than the other kids, and maybe get out of breath before anyone else, but I really didn't think things would get so serious so quickly – I didn't think it would actually get dangerous.
We arrived to the cabin and Sunley seemed fine. I checked her levels, and her heart rate and saturations were low, but not dangerous – 94 saturations and 66 heart rate (normal is 97 and 110). My parents had already ordered oxygen just in case and it was en route to be delivered to us, so we weren't worried. But 10 minutes later, Sunley came in the kitchen very tired and casually said “I can't breathe.” I checked again, and her heart rate was 181, with saturations struggling to stay above 90. Since we had oxygen already on the way, we just continued to watch and measure her levels, and they continued to gradually get worse. A few hours later, Derek called me in from the other room and we both immediately knew we needed to call 911. Sunley had completely lost all her color, her fingers and lips were purple, she was totally out of breath and lethargic, and now she was wincing and crying out between every breath, “My stomach hurts!”
One of our good heart friends had these symptoms moments before his heart attack, so Derek and I were done waiting on oxygen delivery and called an ambulance. I guess she must have looked really bad to the paramedics as well, because one look at her and they were ready to take us to the hospital, even though we had oxygen on the way.
One of the paramedics, Zach, was really easily able to comfort Sunley and gave her a teddy bear to hold while I said a very fast goodbye to the other kids, who had to very suddenly adjust to what was happening. One of my kids had a particularly hard time with it. I took them in the corner and prayed a very short and very direct prayer, asking the Holy Spirit to fill them with comfort and peace. Then we loaded up the ambulance and Derek followed in the rental car.
We all felt the altitude off and on — shortness of breath, headaches, etc. Sunley's was different. Really sudden, and actually pretty dangerous. It was hard to see yet another confirmation that she is not healed. Her body is different. It's been six years, and it's still hard to accept. It's still hard to know what to pray for. Like wayfinding in a place I've never been — how do I ask for direction, when I don't even know where I'm supposed to end up?
All I know is that I hold on to Him, and He carries me.
Once at the hospital, we were easily able to keep her saturations up as long as she was on oxygen. So they brought us a portable oxygen concentrator for her to carry around. The doctors and nurses there were so helpful, and obviously very experienced with altitude sickness, but they had never heard of her heart anatomy. I even saw the doctor with Google images of a more typical version of Hypoplastic Right Heart Syndrome on her phone. We had a long discussion about what the next few days could look like, and we finally got back to the cabin sometime after midnight.
We put Sunley in bed with us and I didn't sleep at all – maybe dozed in and out for 2 hours or so, and finally just got up and looked at nighttime mountains from the living room. I realized I really needed a good cry, but couldn't manage to do it.
That was Wednesday.
Thursday, the kids played mostly outside and Sunley stayed mostly inside, but it didn't seem to bother her much. We let her watch a little more TV than the others, and found the sweet spot with her oxygen support that would keep her saturations in the high 90s. I walked a short trail that connected to the backyard, and put wildflowers in my hair. Rest was had, but not much sleep. Sunley really wanted to sleep with the rest of the cousins in the bunk room, so I took the room next to it and checked on her every couple hours that night. I was worried I might accidentally sleep through the night, but I barely slept again, and finally just got up around 4 am. Stared at mountains.
That was Thursday.
Friday morning, I was disappointed to find that she still was not acclimating. Every time we tried to lower her oxygen support, her saturations immediately fell. Sunley had a pretty incredible attitude about the whole thing and didn't complain, but also was getting bored pretty quickly and requiring lots of location changes, which meant someone had to lug the machine up and down stairs. Thankful we had lots of helpers with that. Derek asked if I wanted to go for a walk, and Sunley's settings were steady, so the two of us left for an hour or so and had a really beautiful hike. We prayed together and took selfies and it was nice to get away for just a minute.
We talked about our experience with our kids and how God has over and over again forced us into a place of needing to let go of control – a blessing that is very hard to accept. On the way back, my mom called and told us that the cabin, as well as 500 other homes in Breckenridge, had lost power, and Sunley's oxygen tank, which needed electricity to charge, was almost dead. By the time we got there it only had about 30 min left, if that, so Derek and Sunley went to the rental car to plug it in there. Unfortunately, the car plug was only 12V and wouldn't charge the concentrator, so once again we said a very quick goodbye to the other kids and we drove Sunley down to town to find a plug at Starbucks. While we were there, Derek got a parking ticket, because of course. We left there after a bit, and took Sunley to get some pho, her favorite food. We were able to use wall plugs there as well. After a while, I started getting bummed out that we were missing the beautiful weather outside, so I left to scout out an outdoor plug in downtown Breckenridge. Found one, got the girl some ice cream, and finished up charging her concentrator. Once it was fully charged (which should last about 3 hours), we headed back up the mountain to spend a couple hours with our family, fully prepared to have to come down again and maybe get a hotel. On the way up the mountain, we said a specific prayer asking God to bring power back to the cabin. Not 60 seconds later, we passed some construction workers and asked how long they thought it would be. They had just gotten it working again moments before we pulled up! When they told us, Derek and I heard a very meek voice from the back seat quietly say “Thank you” through her oxygen mask. How wonderful it is when a 6 year old gets her prayer answered immediately!
We were so happy to get to be back with everyone, but I'm not gonna lie – that whole day WORE US OUT. I slept downstairs again, and again was up most of the night. I finally just got up at 4 to watch the last sunrise of the trip.
That was Friday.
Saturday morning, Sunley was over it. Girlfriend had had such a fantastic attitude the whole time, but by Saturday, she was ready to play with the kids. It was difficult to convince her to keep using the oxygen, and we did let her do about 2 minutes of jumping on the trampoline. She giggled and loved it, and was totally out of breath immediately. But it was good to see our energetic Sunley. She insisted on playing on the playground even though I made her wear her oxygen. At one point, she dragged the tank up the play equipment and threw it down the slide in front of her so she could slide. And let me tell you, that tank was HEAVY. I could barely lug it up stairs.
Sunley’s will is incredible. We got everything packed up, and left for the airport at 3:30 to return the rented oxygen equipment. As soon as we started descending, we watched Sunley's body come back to normal, and by the time we arrived in Denver, a much more normal altitude, she was totally fine. On our way there, a biker gang passed us, which reminded us of our sweet bikers. Hadelyn excitedly told us, “Those are the same bikers I saw on our way in! I recognize their vests!” Derek said, “I guess God sent them to protect us on our way coming and going.” I think he's right. I think angels look just like bikers.
Our traveling at the airport was not smooth, but finally we made it on the plane. We finally arrived home, with the oxygenated air in all its glory, around 1am.
That was Saturday.
I feel depleted, and I feel deeply loved. God provided what we needed on this trip. We saw Him working in so many moments there.
First of all, Wednesday morning, before we left for Colorado, I fell into a beautiful conversation with a friend and ended up discussing all the lovely ways that God invades our suffering and brings such joy. I shared several memories of Sunley's hospital days, and talked about so many lessons I learned while going through deeply traumatic events. I talked about release of control, trusting the Lord, grief and its accompanied deep joy. They shared with me such camaraderie in the Lord, and even sent me a meditative worship playlist for me to dive into.
I know now that the Lord was preparing my heart and steadying my feet for the medical event we would find ourselves in just hours later. On the nights and early mornings when sleep wouldn't come, I turned on that playlist and listened to it groan on my behalf.
The paramedics were above and beyond. We actually ended up with paramedics, firefighters, and a sheriff in the living room Wednesday night, and you'll never convince me there weren't a few angels mixed in there. They were all so peaceful and encouraging. Sunley's nurse at the hospital, Taylor, searched extra long for the exact popsicle flavor Sunley wanted (yellow, of course).
Thursday night, as I went to lie down in the room next to the kids, I realized that it was the first moment I'd been alone since we arrived and crap hit the fan. I felt very overwhelmed for only a moment, said one of my favorite names for God, and immediately felt so much peace. I couldn't form prayers, so the playlist stood in that place. I wanted to feel guilty for bringing Sunley too high, guilty for making her stay, but then I also started to feel guilty for wanting to leave at the expense of everyone else – I told God all of this, and then, those feelings just left. It felt like God literally would not allow me to carry that. So I handed it to Him.
Friday morning, I was starting to feel the weariness of watching Sunley closely while running on no sleep, and God sent my husband into the room to take me on a hike. God knew the power was about to go out, and that Derek and I needed the reset before the next emergency.
My human flesh knows that what God could have done was prevent all of this. He could've strengthened Sunley's heart enough for high altitude. He could've kept the power from going out. He could have made the trip luxury only, smooth sailing, nothing hard.
I wonder if I even would have noticed Him there, if things had been made easy.
Oh, how I love Him and His ways. They are too beautiful for me to understand. Too painful for me to ask for more. I have faith that He keeps His promises. Having faith does not mean I understand at all what He is doing, or why. I just trust the One doing it.
All that said, this week has been such a mix of emotions, and feeling so many at once is heavy. I’m tired. I need sleep. And for goodness sakes, at some point I need to cry. So if you run in to me out and about, just know I am tethered. I am okay. And I’m also really disappointed by the brokenness of this world. Maybe you are, too. I need prayer and worship. Maybe you do, too. Thank God He gave us each other to lean on while we do invisible work for His kingdom.