Post-op Day Three

We had another hard day today, but Sunley is still doing really well — we have had no real medical “hiccups.” The biggest challenge for us right now is her pain management — seeing Sunley be completely silent (except of course when she’s REALLY hurting) has been so hard. She is just emotionally totally shut down, and I don’t blame her! I have to remind myself constantly that it has only been 3 days since open heart surgery, and the kid still has two of her chest tubes hanging out of her, so of course she isn’t energetic yet! 

We’ve started a 770cc/24 hr fluid restriction, which is typical for Fontan recovery. There was some miscommunication getting there, some on my part and some not, but it was all resolved today, and I was happy to see that we didn’t even get to 770 today. I think we ended at around 700 cc for the day, so Sunley is getting everything she wants, which helps her parents! The rest of her recovery will likely be centered around finding the balance of diuretics and fluid intake, and all of that hinges on her chest tube’s output. Once we get those chest tubes out, we’ve been told recovery usually speeds up big time. We are also hoping that after we remove them, breathing will be less painful, and her saturations will go up.

Last night, Sunley woke up around 4 am in a lot of pain, and due to that pain, she was desatting into the high 80s. This lasted for a few hours, so we did end up bumping her oxygen back up to 1 L. This afternoon, we took it down to .5, but now it’s back up to 1. Her RT came by tonight right before bedtime and said that her breathing does sound a little diminished, and her cough sounds a little worse, X-ray is just a tad hazy, but still no one is super concerned. Walking is the best medicine right now, and we hope that any little issues will be resolved by moving. This isn’t good news to Sunley, but it’s the only way home.

The walks are definitely the hardest thing right now for her. All the pokes, yucky medicine, etc is bad, but Sunley absolutely hates it when we tell her it’s time to get up. She was in so much pain today, but we really had to do a walk, so we waited until 11am because there was a “puppy party” with Bailey the therapy dog in the family room on this floor. At 11, we had Sunley sit up in bed, and it took her about 10 minutes to stand up. I was in the process of ordering Sunley’s lunch, so Derek and our PT worked on moving cords around, getting the pole set up, and getting Sunley ready to move while I was on the phone. I was on hold for about 15 minutes, and during that time, Sunley started desatting (again, just from pain), of course screaming, and then she suddenly cough/puked all over Derek and the PT. I’m sure you can imagine the chaos. I finally just hung up, we got the mess cleaned up, and Sunley fell asleep immediately, just leaning on Derek. After all of that, we realized it was 11:45 (at this point we had been trying to walk for 45 minutes), and so we got the wagon for Sunley to ride to the puppy party. When we got there, Bailey (who was wearing a yellow bow specifically for Sunley) gave Sunley some sweet snuggles and did a couple tricks for her. Sunley was totally shut down, but we invited Bailey to Sunley’s birthday party on Monday, and Adair, the trainer, mentioned that Bailey could wear a unicorn costume. Sunley immediately said, “Oh I love unicorns!” And I almost cried — it was so sweet to hear her happy voice again! That was one of only 2 happy sentences today, but she’s still in there, and I’m sure Sunley will be back to her feisty self soon.

We have had good nurses for this entire admission, and it has made such a big difference for us! They have really had Sunley’s back and put her first, and it is just really wonderful from a parent’s point of view. Sunley has such a big team here, and even the people who aren’t technically part of her squad on paper…they’re still on her team. The visits we’ve had from her past doctors here every day have absolutely filled our spirits, and those visits give us both the boost we need to keep looking ahead.

Day one I will sit in darkness

Until the light of your grace shines through

I will wonder where the light comes from

Until I forever shine with you

Day two I will gaze

At the openness above me

Waiting for it to fold open

Waiting for it to pull me home

Day three, amazed at what my eyes have seen

The beauty of all mysteries

Life about me, gardens abundant

Day four my God what have you done

The swirling lights are beckoning me

To come

Day five I will fly in the skies you have made

I will swim to you until my body gives out

Day six, oh day six

There is breath within me that I can’t explain

I will stay here until you call my name

I won’t rest until the days are up

Until the seventh day

I will work for you

Until the seventh day

I won’t find rest

Goodbye CICU

I didn’t update yesterday because we were all just way too exhausted to do anything but sleep by the end of the day, so I have a lot of news to report! But before I do, we have a major answered prayer that I wasn’t expecting: Siblings can visit again!! So today Hadelyn and Ruger were able to see Sunley. It was much needed, and I’m hoping it helped everyone.

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Yesterday was our first full day post-op. Even though Sunley was alert and taking on Monday after surgery, Tuesday she really seemed to totally shut down, and even throughout today we couldn’t get any words out of here — sometimes not even a nod to a yes or no question. It’s been really hard to see her like that. The only time she really spoke much Tuesday or most of today was when we made her get up or when the nurse stripped (emptied) her chest tubes, and of course then it was screaming and not really talking. Lots of begging to stop and go home and “No I’m not doing it!” or “I think I should have never come here!” There are no words for how absolutely devastating it is to see your spunky 3 year old like that.

Sunley got one of her three chest tubes out today, as well as her central line (the one in her neck). They were both very painful and required being held down, but the central line was especially bad. It was taped all over her hair, and was attached by a few very, very tight stitches, which made it super difficult for the nurse to detach. She did great though and was so sweet and patient with Sunley. 

All of those moments will be etched into me forever, but I pray that’s not the case for Sunley. 

We have had really good nurses in the ICU, and our nurse Abby actually got Sunley to have a short conversation with her this afternoon. It was absolutely beautiful to see Sunley come out again a little bit. Although we had great nursing care, I was a bit frustrated with a lack of communication with and between some of the other team members on the unit, so I’m really happy that just a couple hours ago, we got to move to the step floor! They are currently having a miscommunication about Sunley’s fluid restriction, and I’m pretty much done with the miscommunications, so I told our new nurse that if anyone wants to limit her fluid, they need to come talk to me in person and get it straightened out. 

Fluid restriction is common with Fontan recovery, and we did have some on day one, but it has been lifted since then. Sunley’s Fontan pressures number (I think it was the CVP) was consistently super low, so the team decided to lift all fluid restrictions for a while. I’m sure we will still end up on restriction, but for now the priority is keeping her hydrated and beginning to fill that belly with food! 

Back to yesterday, Sunley was able to get up and walk around half the unit! I mean, we definitely forced her, and she screamed the whole time, but she did it. And it has definitely helped getting fluid off. Today she walked again, and then sat on the couch with me for about 45 minutes. It was really, really hard and I hate that she has to do it, but I’m very proud of her.

I realized as we were leaving the CICU today that if things go well, that may have been her last admission there. And I have been super emotional about it ever since. We have been inpatient at TCH 6 or 7 times, and have had about 12 rooms here. I don’t think I can really explain all of the conflicting emotions of that, and I think if this wasn’t a lifelong condition I might feel differently. I feel super guilty for having any feelings of sadness leaving the CICU, because I am obviously super happy that Sunley is doing well, but there are huge chunks of me in this building and on that floor — pieces that I can feel only when I’m here. And so many weighty memories, good and bad. The person I was before I was a heart mom died a long time ago — it feels like an old parallel universe, and I can’t even imagine being her again. TCH is the symbol of that process for me. So leaving the unit and so many people that have been such a huge part of our journey, knowing we may not ever be back — it’s just hard, even though it’s objectively and obviously a very good thing for Sunley and for all of us.

We have had SO many visits from familiar faces, and again I am floored at the amount of people who remember Sunley — even people who only had one or two days with her. Those visits to our room have been better than any therapy I could ever have. There are spaces in my heart (probably in my full-grown right ventricle) saved especially for those souls. We can’t see the angels that fight for us behind the veil, but the people who have chosen to fight this journey with us are the closest thing to angels I will see this side of heaven. 

Besides the team here, we have so many joining the fight in different ways — people sending us gift cards, grandparents caring for our big kids during the day, bikers (you all know about them!), and so many encouraging messages. I am really missing our “posse” of heart parents from 2018, before private rooms in the new tower, before COVID restrictions, etc. but this is a totally different chapter with a toddler, so it’s not really comparable. And again, those visits from our old teams make all the loneliness of hospital life so much less!

We’ve seen lots of yellow Sunley t-shirts around the hospital this week, which is just a bright and happy thing to see. They will be on sale until May 31st through Write With Light Project, and they benefit the Fontan Go Clinic here at TCH, so if you are looking for a way to help, this is it!

I know all of the photos of Sunley show her looking really sad…well, because she is. We have seen one smile since surgery. But I really feel like we’ll be turning a corner soon and seeing more and more glimpses of the real Sunley!

Just a Mother

Tonight’s post will be short and sweet, because caring for a 3 year old Fontan patient is intense. We started our very early morning at 4:45, and it has been pretty much nonstop. 

When we loaded Sunley in the car, we turned on the radio and “Speak to the Mountain” was playing followed by “Wait on You.” I could not have chosen two more fitting songs to prepare our hearts for this day. On the way, I thought about how surreal it was that somewhere her team of doctors were driving in for another day of work. For them, every day is their patients’ most important day. We arrived at the hospital around 6, and ran into Sunley’s surgeon, Dr Jeff Heinle (or J-Dawg as we call him) on the elevator. I gave him the best pep talk I could think of, and I’m sure it helped ;)

Handing her off to her team is always just really, really terrible. But we loved her anesthesiologist, Dr. Mossad, and his team — they made us feel very informed and very comfortable with the whole thing. During her surgery, someone put her bow and her hospital bracelet on her Minnie doll, which we discovered afterwards. What a sweet little thing to do that brought us some smiles. Don’t ever underestimate little personalized touches like this!

Surgery was from 7:20am until about 2pm, which was Sunley’s fasted surgery so far!

Dr Heinle did a non-fenestrated Fontan, and it went very smoothly. Sunley was on bypass for 53 minutes, and her team described the surgery as “uneventful,” which is exactly what we wanted.

I can’t even begin to tell you the comfort we felt scrolling through social media and just seeing a sea of yellow t-shirts. It was truly overwhelming, and more comforting than I can ever describe. I knew we would be well supported the day we got her diagnosis four years ago, but to see it physically like this is just unbelievable. When it’s not t-shirts, it’s bikers, or gift cards, prayer services at churches we’ve never visited, a sweet text, a hello from a familiar nurse, a prayer said behind closed doors — every little act brings us peace and hope through the Father.

Sunley was extubated right after surgery, and as of 8 pm tonight, she is already down to 2L of oxygen on the nasal cannula. Amazing. She is in quite a bit of pain when she wakes up, and every time she wakes up, she tries to get out of bed. We’re keeping her pretty still for tonight, but her doctors hope to have her walking in the morning. We know that will be really rough, and as much as my inner momma bear wants to tell everyone to leave her alone and let her sleep, I know that getting up and around quickly will be best for her recovery.

The kids facetimed with me tonight, and even though she was half asleep, when Sunley heard her brother’s voice, she yelled out, “Ruger!” It was the sweetest thing, so they got to talk for just a little bit until Sunley started hurting again.

We are so impressed with the staff here, as always. It’s amazing to me how many people remember Sunley, considering how many patients they have over the years! It really speaks to their compassion and their dedication to do good work here. Sunley is very loved, and that makes her parents feel very loved.

I have already started decorating her room, although we hope to move out of ICU in just a couple days. Having a sweet, happy space is the only way I know how to help Sunley, so decorating is usually one of the top priorities. I wrote this sometime last year, feeling all of the frustration of not being able to do more for our little one:

I wish I was an artist

So my feelings I could paint

When I watch my children suffer

And all I can do is wait

I wish I was a doctor

So I could understand the words

They use to justify the wounds, the pain, and all the hurts

I wish I was a funny clown

I'd always make you smile

Even in the hardest journeys

With never-ending miles

I wish I was a dragon

With a cunning mouth of fire

I'd fly you far away from here

To wherever your heart desired

I wish I was a scientist

Who fixed all the broken things

You never would have worn the scars

Or had a single scary dream

I wish I was the tallest tree

Up which you'd come to hide

We'd spend the day with yellow birds

And never go inside

I wish I was an angel

I'd whisper sillies in your ear

I'd guide the hands of surgeons

And show your eyes that God is near

But here I sit, just your mother

Wishing there was more that I could do

I'll say it more than you can stand

A thousand I love you's

Just your artist mother

Hang some decorations

Just your doctor mother

Gather information

Just your funny mother

Sing some silly songs

Just your dragon mother

Tell the doctors when they're wrong

Just your science mother

Fundraise to find a cure

Just your tree branch mother

Make you feel secure

Just your angel mother

That's the easiest to be

Cause when all is lost and stripped away

God is just so clear to me

{ Time to move mountains, sweet girl }

Surgery Tomorrow

Surgery tomorrow is scheduled for 7:15 am, and we should get updates each hour. I plan to text my immediate family in a group text, and then I will copy and paste that text to Facebook and Instagram (IG is @lemonadelanding). I hope to keep the blog updated as well with progress, but sometimes things get really busy at the hospital, so I’ll just do it when I can find the time! 

For anyone wearing Sunley shirts tomorrow, please post a photo using the #sunleysummit so I will see it!

Remember to order T-shirts, listen to the playlist, and think about signing up for a lemonade stand! Once things calm down around here, we’ll get to start moving on getting those stands organized — we have about 25 going up as of right now.

We have certainly had more hospital time than we planned on having the week before surgery, but we’ve still managed to make some wonderful memories. The morning after we arrived, Sunley had an appointment at TCH for a holter monitor placement. She absolutely hates having stickers on her chest, and unfortunately they gave her stickers plus some really strong industrial level tape on top of the stickers to make sure they stayed on. 

Taking them off was absolutely terrible, and there were lots of tears and “Why did you do that to me?!”. And then, a few hours after we dropped off the monitor, we got a call that for some reason the data didn’t record, so we had to do it all over again. This time, I went by Walgreens beforehand and got an Ace bandage to wrap around the stickers instead of taping it on. The nurse told me it would work way better than the tape anyway, and to that I ask, “THEN WHY ARE YOU USING TAPE TO BEGIN WITH?”

Anyway, this time the monitor worked and taking off the stickers was way less dramatic. Since then, Sunley has asked me several times to bring the wrap to the hospital — but of course I can’t wrap it over her incision. At least I know it was a win!

Moving her surgery up a day caused more chaos than I thought it would — we had to rush to get her prescription for her nose gel, had to start the pre-surgery body wipes immediately, and Derek’s parents had to reschedule their flight to come out earlier so that Derek could go to the pre-op day with Sunley and me. Instead of having a week-long slow paced vacation, we had at least one errand or appointment a day to the hospital, until today (Sunday). It’s been extremely hectic, but we’ve still made some wonderful family memories.

Pre-op day was long, but we knew it would be. More pokes and swabs and tears, but also the best nurses and doctors around. Sunley enjoyed her visit overall, and got lots of attention, toys, and treats. Derek and I saw (and hugged) some familiar faces, which is more comforting than they can possibly know. Child life came by, and Sunley got to pick out a scent for her mask that she’ll have when it’s time to fall asleep. The Child Life Specialist showed Sunley lots of pictures of what to expect, and Sunley kept saying, “Oh yeah, I’ve done that and I am NOT doing that again!” It was funny and a little sad — We’ll see how things go with this girl!

Tonight, I’m packing up for just a few days, and I hope to come home to the apartment soon and visit the kids, and switch out clothes, toys, etc. There are a few things I forgot like slippers, travel shampoo, etc. but nothing major — I’ve prepared as much as I can, and now it’s time to do the thing. I think I would feel more ready if this surgery was actually fixing her heart, but we’ve known the whole time that these surgeries are palliative, and that’s a hard thing to confront.

I’m not sure what to expect, except to see God do amazing things. Tonight I took a lot of photos of Sunley’s blue lips and her current scar, because I know those things may change after tomorrow. And as much as I know it’s a good thing, I feel like I will miss it — the scar as it is, and the blue lips. I’m so grateful that these surgeries exist now, but I hate that she has to do them at all. 

There’s not a lot of time or space for reflection right now as I pack and make sure everything is ready for the morning — but I know that tomorrow while we wait, God will bring us inexplicable peace. He always, always does.

I hope to do a blog post soon explaining exactly what this surgery is, and what we hope it will do for Sunley in the future. But for now, these quick updates are all I can do with my current bandwidth. Thank you all for continued prayers.

Surgery Moved and T-Shirts Reopened

Well, our first day in Houston was quite a doozy. I planned on just posting a blog tonight about our AMAZING day yesterday, traveling in with the biker escort — but before I get to that, I need to let everyone know that Sunley’s surgery has been moved to Monday, April 18th, and that we are reopening the T-shirt drive!

We had a lot of interest in ordering more t-shirts to raise money for the Fontan Go Clinic, so you can do that here. This next batch will ship out in June, and we plan to all wear them again on Lemonade Stand days, July 22nd and 23rd! You can also read more about that fundraiser here.

Non-emergent surgeries often get bumped, so we were ready for the news that it would be later, but moving it up sooner has totally thrown me for a loop. We had a morning appointment at TCH today to get Sunley’s 24 hour holter monitor placed, which I expected to be a super short appointment. While in the holter lab, the coordinator called me to let me know that a more urgent and lengthy surgery would be taking Sunley’s spot on Tuesday, and she asked if we were up for doing surgery this Friday!! I tried to be flexible and scrambled the adjustments in my head, but told her there was just no way we could be ready by then. So she called me back a couple minutes later with Monday as an alternative. Our grandmas are coming early, and we now need to start the prescription nose swabs and pre-surgery body wipes, etc. We just haven’t done anything here yet as a family that we were so hoping to do before the big day! We came a week early to spend some slow-paced quality family time together, and while we still can, I’ll admit that I’m very frustrated to have to cut that short at all. Not frustrated with the hospital, just at the situation. I told a friend today that I don’t feel like I need to learn the lesson of “I don’t have control” again, yet here we are having yet another thing not go as planned. Because it’s a holiday weekend, we have to do pre-op stuff starting Friday, and we really need to watch our exposure to germs over the weekend, so we’ve had to cut a few plans out. While the surgery itself is only moved up a day, moving pre-op up by 3 days is what really changed all the plans.

All that to say, everyone wear the yellow shirts and listen to Sunley’s Songs on Monday, April 18th instead of the original date!! I’ll keep everyone updated throughout the day on Facebook/Instagram, and will post more detailed updates here on the blog as I find the time. Hopefully, her surgery won’t be moved again, but we are aware that when it comes to heart surgery, you just roll with the punches!

Now to all the silver linings:

This evening, I replaced the ugly grey holder monitor purse with Sunley’s very fabulous pizza purse, and it was such a little thing that felt like a huge heart mom win moment! Sunley absolutely hates the stickers on her chest, and loves her pizza purse. Even just that little bit of happiness made it a little better, for Sunley and for Momma!

We started this morning FINALLY reuniting Sunley with her very first leftie bestie, Oliver. Most of you probably remember several of our heart buddies from TCH four years ago, and this family was the first. Oliver and Sunley had their first surgeries on the same day, and we quickly bonded for life. He is Hypoplastic Left and she is Hypoplastic Right, so they complete each other. Oliver lives in Arkansas, but had a Cath procedure yesterday, so we were able to have a short and sweet visit with them as they headed home. It was so good to see them again. Leslie and I talk just about every day, so we mostly felt like this was totally normal, and it certainly didn’t feel like years had gone by! Having friends in the heart community has built us up more than I can ever express — they are a huge part of our support system.

Now, the bikers.

Yesterday. Was. Incredible.

Most of you have already heard about the biker escort that was organized for us by Catholic Cross Bearers. The amount of planning this took was unbelievable, and the escort was seamless. We met our first group in Edmond near I-35, and were escorted all the way to Houston by different groups. Of course, our kids were showered with gifts, high fives, prayer, and lots of encouragement along our stops. 

All of you know, I did not feel ready to go to Houston. But once I got on the road, and it really became physically obvious that we are not doing this alone, I just felt that much more ready. I know we can do this. I know we have to do this. And I know God will continue to bring unexpected blessings our way.

Looking out my windows and being surrounded by these strangers who took off work, adjusted plans and schedules just to drive into the fire with us — I felt like I could almost see the angels who were surely surrounding our transport. And I bet those angels look a lot like bikers: tough, compassionate warriors, some veterans of long ago battles, and every single one of them completely selfless.

That’s the word that Derek and I kept falling on to describe what these bikers did for us: SELFLESS. We don’t know the sacrifices they made to be there for us, but it certainly and at the very least took an awful lot of their time. And it lifted our spirits more than words could possibly describe. We forever love bikers the way we forever love nurses. This is why Jesus was so effective — because selflessness in its purest form is so incredibly unnatural for us humans, and so very rare. Thank you bikers. You have only a small idea of how much you’ve shouldered for us.

To top it all off, several friends came to see us off, and others were waiting on a pedestrian bridge in Norman holding a “Go Sunley” sign. And if that’s not enough to feel the love of God through His people, He just so happened to cover, COVER, the ground in the brightest yellow wildflowers once we got into Corsicana all the way to Houston. Pictures do not do it justice. The entire day felt like one giant hug.

God knew when these flowers were just seeds that they would bloom at the perfect time, for His little warrior on her way to battle. And for her mom. We are being carried. 

The song “Held” by Natalie Grant says it best:

This is what it means to be held

How it feels when the sacred is torn from your life

And you survive

This is what it is to be loved

And to know that the promise was

When everything fell, we'd be held

Please continue to pray for all four of our kids. Sunley keeps asking to “take me to the home with the rainbow room,” and Hadelyn is being extra helpful, which is beautiful, but also makes me wonder if she’s putting too much pressure on herself to be perfect. Ruger keeps forgetting the plan, and I think he’ll have a hard time not seeing Sunley for however long she’s inpatient. And poor little Davis is clearly so confused and thrown off in a new place, after just moving into our new house a month ago! They are all having fun and enjoying the new sights in Houston, but I know it’s hard on them too. Thank you all for carrying us.

Song of Jairus

There is nothing left to do but go. Well, nearly. I’ve only just started packing, but compared to everything else, packing will be easy. 

The T-shirt drive is done (thinking of opening it back up due to more interest, so let me know if you’d be interested!).

Our leaky back doors are taped up AND we have a friend who we’ve hired to house-sit for us the whole time we’re gone in case they start leaking again.

We are (pretty much) unpacked into the new house, just in time to pack for Houston.

The car is decorated for the motorcycle escort to Houston.

All of our ducks are arranged as close to a straight line as possible. All that’s left to do is go.

I’m frustrated with my own feelings, and expected to feel much more ready than I do. Maybe I’d feel differently about tackling open heart surgery number 3 if it was truly going to fix anything. But instead, I feel like we’re just (hopefully) trading low saturations for a different kind of heart disease: Fontan life. I have no idea what Fontan circulation will be like for Sunley, but of course we hope that it will be really, really good and normal for a really, really long time. And it just might. 

In the meantime, Sunley’s momma and daddy will be working really hard to give her and other Fontaners better options in the future, for if and when she starts having health issues due to the circulation that this surgery creates. 

Derek and I are praying for a smooth recovery, and a really good quality of life for Sunley. And we are surrounded by support. We have received countless hugs, prayer services, gift cards, babysitting, you name it. There is nothing we need that has not been provided by God’s followers everywhere. How pleased He must be with how we have been lifted. It is very difficult, and often awkward to accept help, but I’ve learned to lean into it, and God has blessed me immensely with really good and pure friendships.

Music has been a HUGE part of my grief and healing and coping and praying, always. My little sister knows this, and offered to make a playlist on Spotify of songs that remind her and me of this journey we are on with Sunley. I hope you will all listen to it during her surgery — I think it could be a really special way to flood heaven with worship and prayers on her behalf. It’s also a really great way to start your day — just saying. The link is here.

We are certainly not alone as we walk into this fire again. Still hesitant, but not because we are afraid — only because we wish we could take her place. But at this point, we’ve done all we can do for Sunley Summit. All that’s left to do is go and watch her fight. I know angels will be in the room with her.

I’ve written several songs over the last few years, and I have no plans to debut my Florence-Foster-Jenkins-very-passionate-yet-not-always-on-key- singing for anyone, but I made it a New Year’s resolution to share a few of them here this year. I’m teaching them all to my kids so at least they won’t be forgotten when I’m old and forgetful. This one I wrote last summer when Sunley’s body was very, very weak, and after reading again the story of Jairus. I wonder what it was like to leave a dying daughter behind to find Jesus. I can absolutely imagine the desperation Jairus must have felt in reaching Him in time. How frustrating and disappointing it must have been when Jesus stopped to speak with the woman who touched him in the crowd. Jairus, a ruler in the synagogue — I wonder what all he gave up to go in search of Jesus. I want so many more details from this story when I get to heaven.

Song of Jairus

I know You can heal her

I know You can hear my plea

You parted the sea

Walked over the deep

I know You can heal her

I’ll walk over many miles

Just to ask of You

To come home with me

You gave this child to me

Don’t make me set her free

I want to see Your power

Make all of them believe

I know You can heal her

I know You can move the seas

You’ve done this before

Lord show me much more

I know You can heal her

This other You’ve stopped to save

And now I fear it’s too late

You chose to stop moving

Took time to search for her

Lord what were You doing

God please come and heal her

Despite death, I still believe

You parted the sea

Now please fight for me

I know You can heal her

Whatever my friends say of me

I’d give up all, my everything

No one understands like You do, Lord

I believe, and that’s all I have

Nothing more

I know You can heal her

I Will Not Curse It

Today felt uphill, and although I carried much, I was also carried by love of others. The more I try to carry, the more God enables me, and the more lovely souls He sends my way. We are weary. But we are loved. Thanks to everyone who has been walking this journey with us — You know who you are, and heaven knows your name well through our prayers of thanks.

Your will has brought me here, and I will not curse it. When my bare feet are pained by rocky ground, I will not curse it; I will joy in the mountains that You move. When my soul thirsts for water of another world, I will not curse this one; I will serve the souls in my care. When my arms ache from lifting burdens by myself, I will not curse them; I will let go and watch You lift my arms alongside Yours. When my breath leaves because of the brokenness of this world, I will not curse it; I will witness Light increase as the cracks grow in width and depth.

I will neither curse the ground on which You have stood my feet, nor will I stand still.

Bucket Lists and Bikers

The T-shirt drive concluded at $12,905 in total sales and donations for Write With Light Project, and I am BLOWN AWAY. We’ve shipped out most of the shirts, and the rest will be shipped this Thursday. For everyone who participated there is no THANK YOU big enough. You have lifted my spirits so much. I have enjoyed packing the orders, and getting to see every individual name on the orders. It’s brought so many smiles to my face that wouldn’t have been there otherwise. Plan on wearing your yellow Sunley shirt on surgery day, April 19th! We’re still accepting donations and sign ups for lemonade stands, so feel free to do that if you missed the T-shirt drive.

The countdown has dwindled to days now until we leave for Houston (April 12th). Fontan time feels incredibly surreal and very overwhelming, despite the fact that we had lots of heads up that it was coming. I’ve tried to fit in as many sunshiny bucket list things as possible. I would have liked to have longer bucket lists for the kids before we left, but I could only pull off so much with everything going on. We had a really wonderful visit with my sister and her family from Nevada last week, and all of my kids were so happy to see their cousins. I’m so glad we could pull off that trip so close to surgery. Everything now is hectic and wonderful at the same time.

We still have boxes in the new house, and of course the instability of moving is nothing new to us — this is our 8th move in 10 years of marriage (we had five different addresses the year Sunley was born).  But even though we are used to it, moving during such a heavy time is pretty unsettling (don’t get me wrong — we are RELIEVED to finally be in this house!). 

I feel myself reclusing away from everything a bit and bracing myself for the next chapters of Sunley's fight with Hypoplastic Right Heart Syndrome. I can't help but become a little withdrawn when we have big medical things going on. I find it really hard to have any sort of conversations, and I really struggle to remember day-to-day stuff. So if I seem extra socially-awkward when you see me, it’s not you — It’s the Fontan. I’ve been zoning out a lot more, and realizing that for several minutes I haven’t moved because I’m just picturing everything — the sounds, the tubes, the layout of the hallways in the hospital — I know at least part of what’s coming, and while I’m so grateful that we have this care as an option, I’m really dreading putting Sunley through all of it.

As much as I don’t want to do this, I know that the strength will show up when I need it — That’s just being a mom, medically complex or not. And in the meantime, our family is covered in support. I have daily offers of help in so many different forms, not to mention the thousands of prayers going up on our behalf — answered with a sense of peace mixed into the dread. It’s so much easier to feel close to God in times like this, hence the whole “joy in suffering” thing. And that’s the part that I’m really trying to absorb.

You might remember Sunley’s third birthday motorcycle drive-by (click here for the photos). Quite a few bikers found out about her love for motorcycles, and came through in a big way for her. They even gifted her with her own toddler motorcycle, and gave her an official road name patch for her leather jacket (Firecracker). Well, a few of those bikers have been working behind the scenes, and have organized a biker escort for us with various biker groups, all the way from Edmond to Houston on April 12th! We’ll be leaving Edmond at 10am that day followed by quite the entourage. (Pray for good weather, because rain could cancel the plans)

I am just completely beyond humbled that total strangers would do this for us, but not at all surprised because for the last 4 years God has sent us moments like this over and over again. I’ve posted our route below, including the stops we plan to make to pick up/switch out biker groups, and I know there’s a few people planning to find a pedestrian bridge on I-35 to watch us go by. If you happen to see it in person, please take a pic or video with #sunleysummit so I can see it!

Things like this just bring so much light into gloomy situations. A long trek to Texas for surgery is now a celebration, and a reason to decorate our minivan, thanks to the thoughtfulness of strangers. I am tempted to list all of the people who have been coming through for us, but there are truly too many to list! I am in awe of how God uses His people to show us His tangible love for us. This is one of those situations where it’s hard to feel like you’re really helping, but trust me — even just a prayer for us is felt in big ways. A sweet note is kept forever. A meal is treasured with a sigh of relief that I don’t have to cook or clean up that day. A hug brings down the walls that I’m desperately trying to keep up in public. Every little thing counts, and God knows them all. 

My Firm Foundation

I have to share this song again (below). Tonight, I had dinner with a friend. We spent the evening encouraging each other and swapping our struggles and victories in motherhood and homeschooling, and I poured out my feelings about Sunley’s upcoming Fontan surgery, and my concerns with OUR BACK DOORS LEAKING (another story for another time). I’m in the car afterward, driving home by myself (one of my favorite things to do), listening to worship radio, and this song came on. It has recently become a favorite, and will likely forever be an anthem pointing to this time in my life. The lyrics are perfection, and it so clearly says what I’ve been feeling.

I ended up with tears streaming down my face, as I often do lately. But I find myself frequently crying not because of worry over Sunley or because I have too much on my plate — I keep crying because of this very full (overflowing) sense of joy and gratitude, and a deep frustration that this shell of a body won’t allow me to praise the way I really want to. If I worshipped outwardly the way I feel inwardly, people would look at me like I’m crazy. Unless, of course, they have been there too. We are made to worship — just like the rest of creation, except in a much more connected way. I live in this constantly thin place with Jesus, and I feel so ready to leave all of this behind, if He would just call us home already. The only word to describe this feeling I get when I worship is a yearning for Jesus. And this shell I am in, this world I am in, can only allow so much closeness.

I don’t want to make my 3 year old have another heart surgery. I don’t want to deal with petty issues, like leaky doors and health insurance and LAUNDRY. But God sustains me, and Jesus walks through it all with me. When I dread handing my beautiful girl over to doctors again, to go into an OR again, without me physically there with her, I’m weirdly overcome with peace and a feeling of smallness that allows me to give over control. I will definitely cry when she goes back — I always do — but not just because it’s hard; Because doing something like that feels so close to seeing Jesus actually hold me in His arms.

All of that joy creates this fire in me to serve Him. And I stumble through service, failing a lot, sinning a lot, but I plan to keep trying. When I see something broken, I can’t turn away from it. That’s the whole point of starting the nonprofit that we did. I want to be completely exhausted when I’m old and dying, from all of the, just, trying. The world will still be broken when I’m done with it. But I’ll be deaf from listening to worship music too loudly. Blind from standing in the sunshine without sunglasses (they mute the colors, you know). My back will be hunched over from picking up my babies day after day, and ignoring my scoliosis pain. My face will be totally wrinkled from smiling too much (and the aforementioned sun, of course). My brain will be forgetful from all of the ideas I tried to make work, the memories that were too huge and too many to keep to myself. I plan to be totally spent and exhausted from looking for ways to serve. Lofty goal, and completely unattainable without Jesus. The more I get to know Him, the more I am unafraid to ask Him to make me nothing. More of You, less of me.

Current Goal: Raising money for Texas Children’s hospital — click here to help.

Getting to the Summit

We have certainly been the best kind of busy around here! With the T-shirt drive in full swing, and finally getting to move into our new house, it feels like we are finally moving forward. With all of that moving-forward joy, I am also experiencing this deep sense of dread…and peace. If I have learned anything over the past 4 years, it’s that completely polar opposite feelings can coexist at once. 

I’ve always called Easter “jelly bean season,” and am always the first to stock up on the little happy rainbow balls of sugar. The aisles at every store are packed full of Easter decorations now, and all I can feel when I see them is rage. Sunley’s surgery is scheduled for the Tuesday after Easter, so that is our benchmark. I’m surprised to feel so angry that anyone could be buying jelly beans and bunny decorations when my baby is about to go through this again. I hate the feeling of walking through the store and knowing that no one there knows what’s happening. And likewise, I wonder what everyone around me is carrying themselves. I’m watching the milk expiration dates inch closer and closer to April 19th, and it makes me nauseous. In all of that bitterness and anger and frustration, also coexists inexplicable peace. And we all know where that comes from. And I am not the first one to feel this kind of peace.

I’ve been thinking so much about Abraham taking his son, Isaac, up the mountain. I’ve heard so many sermons about what must have been going through Abraham’s head — how he may have barely slept the night before, etc. I think he probably just had big conflicting emotions, and chose to follow the torch of peace instead of worry. I’m not comparing my daughter getting life-saving open heart surgery to Abraham being told to kill his own kid. But there are probably some similar dreadful emotions that come out of both scenarios.

When I was pregnant with Sunley, I spent so many nights tearfully begging God, “Please don’t make me do this.” After it became clear that I did, in fact, have to do this, He came through. God brought us peace, support, life-long heart friends, an incredible team of advocates in white coats and scrubs,  and SO many moments of revealing His presence in incredibly tangible ways. I am feeling those same emotions again. Please don’t make me do this. But just like Abraham, we are walking up the mountain anyway — Even when my Sunley Summit begs not to walk the mountain, and even when I am disgusted at the brokenness of the world — We are walking up the mountain, because we know the Creator of the hills and valleys.

The Old Testament has some really confusing stories, and this has always been one for me. And while I don’t understand everything about every passage in the Bible, and never will, I know that each story teaches me a bit about the unchanging character of God. He asked Abraham to do something awful. And then He made a way. He always does. I don’t know what Abraham did the night before he walked the mountain. But maybe he was able to check on Isaac in the middle of the night, and then went on to have a peaceful sleep himself because He knew the character of God, and Abraham knew that God would provide. And just like Abraham, even though we have no guarantees of endless tomorrows with our daughter, I am able to tuck Sunley in at night, kiss her goodnight just as I do my healthy kids, and know that in the morning, GOD WILL PROVIDE.

And so, here we go again, trying to help our Sunley “summit” another one, and we are dreading it and bitter and angry and confused — But overshadowing all of those emotions is the absolute trust that God will make a way. And the peace that comes with that is absolutely magnificent. To finally feel what it means to have joy in suffering is a gift I wouldn’t trade for all the jelly beans in the world.

PS- Check out our T-shirt drive, and sing up to host a lemonade stand to support our new nonprofit, Write With Light Project!