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. 

hypoplastic left heart syndrome

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

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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!

hypoplastic right heart syndrome

T-Shirt Drive

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It feels like the last four years have been leading up to the moments right in front of us. I can’t believe Sunley’s Fontan procedure is just 7 weeks away. If all goes as planned, at this time in seven weeks, Sunley will be recovering from her third (and maybe her last) open heart surgery. We will be updating everyone over the phone and through this blog, we will be exhausted from the day, and we will be overwhelmed with gratefulness that our daughter had a smooth and successful surgery.

That is the plan. And we are well aware that sometimes plans change. And if they do, we will adjust our prayers accordingly.

I have done everything I can to prepare for this surgery. I have boxes labeled “Fontan,” so that they wouldn’t get lost in the move to our new house. They are ready to go with us to Houston, and contain all of the keepsake decorations from her ICU rooms as a baby, as well as hands-on hospital entertainment that I’m hoping will keep Sunley’s hands distracted from the tubes, cords, and tape. I have talked to each of the kids about what to expect, prepared them for not getting to visit Sunley in the hospital, and planned fun outings to bring some joy into the harder parts. We’ve gotten on a waitlist for a furnished apartment near the hospital. I have finally gotten things together for Write With Light Project, a lemonade stand fundraiser for a new clinic that will treat Sunley if and WHEN she reaches adulthood.

It feels like I’ve been preparing for battle (again), and I am finally getting these boots on the ground. To kick all of that off, I am so excited to share that we are having a T-shirt drive from now until March 24th!

The shirts are, of course, yellow (Sunley’s favorite color), and have a simple logo design that I made for her when she was just a baby. We will all be wearing them on surgery day, and I hope you’ll join us! We have kids sizes as well as adult, and they are super soft fabric. The online shop also has a couple of stickers and downloadable images to use as a phone lock screen. This drive will kickstart our fundraising for Write With Light Project, and will be open until Thursday, March 24th. Please tell LITERALLY EVERYONE.

Don’t forget to sign up for a lemonade stand while you’re ordering T-shirts! We have 20 stands going up so far, and you can register until mid-May.

Click here to see all the ways to donate or be involved.

Spring Plans

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Despite my best efforts, I have 3 very big things happening at once:

  1. Finalizing our home build/moving in

  2. Preparing for the Fontan Procedure in Houston

  3. Finalizing my nonprofit, Write With Light Project

I had a really great plan, and these three things were going to be quite spread out from each other, but as I know very well, I don’t actually have control over anything. At all. So while I’m a bit busier than I’d prefer to be, all three of these things are very exciting, very emotional, very “big.” Thanks to Royal Tees, I’m also ready to finally announce that in March, we will be having a T-shirt drive to celebrate Sunley’s Fontan and to kick off fundraising for Write With Light Project! All the proceeds this year will benefit the Fontan Go Initiative at Texas Children’s Hospital, which I’ve written about before. If we can get that program going, it could DIRECTLY improve the quality of life for Sunley and so many other people like her. This is not just a raising awareness fundraiser; It is a take-action, let’s-do-something-about-this fundraiser.

The T-shirts are, of course, yellow (Sunley’s favorite color), and have a sunshine logo that I made for Sunley Summit when she was born. I drew that little logo on every available marker board in the TCH hospital rooms, and would sneak them into exam rooms too! I wasn’t sure I would do T-shirts for her surgery because I didn’t want my other kids to feel left out, but let me tell you, I really underestimated these kids. Not once in the last four years have any of them displayed any sort of jealousy, which would be totally understandable.

Below is a photo taken the morning after we abruptly moved out of our Midland house and into my parents’ house on Valentine’s Day of 2018. We had just finalized Sunley’s diagnosis, and my heart was breaking for these two babies who had no idea what was about to happen to us all, their little unborn sister included.

hypoplastic right heart syndrome

Derek and I have been very intentional in our language surrounding Sunley’s care. We say things like, “Look, all of these bikers came to show our family love because they know that we are a heart warrior family.” I talk about how each of them have unique bonds with each other because of the things they all went through — surgery, separation, loneliness, etc. I know I can’t shield them from all of the negativity that can come with this heart world, but I can certainly teach them how God understands their unique viewpoints, and how He can fill the voids that trauma leaves. My healthy kids have a different journey with CHD than Sunley does, but they have always attacked that world together, and I am just completely obliterated in thankfulness for that. God answered one of my most desperate prayers by giving them such close bonds with each other. Marvelous is the word that comes to mind when I think of how He has orchestrated things for us.

Grateful and, Like, Really Tired

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The waiting is always the hardest part, at least for me. While having a surgery date for Sunley brings a weird mix of relief and dread, we still feel a little stuck in the waiting. Lots of planning conversations end with “Well let’s just get through surgery and we’ll revisit this,” or “Someday, after we get back from Houston we can…”

And of course, we are still waiting on moving into our new build. Most of you know the nightmare that’s been happening with that — literally waiting on one last thing for three months. Such is life. So much waiting.

There was SO much waiting for Sunley’s official diagnosis, and what a roller coaster that was. And while we have a surgery date, we don’t know how well this surgery will work (though we expect and hope it will be perfect), and we don’t know how short or long her hospital stay will be. We just have to wait and see. When we want answers, we have to wait.

We have NO control. And it is so frustrating.

Deep breath.

I spent the weekend celebrating my oldest daughter’s birthday, and she was the center of all of my attention, thanks to her dad keeping the younger 3 while she and I spent two nights away. It is increasingly difficult to give each kid all of the one-on-one time that they deserve, and getting some alone time with Hadelyn was so very good for both of us! She is halfway grown, and she has no idea how incredibly wonderful she is.

One day at a time. I have no control, but lots to do before the trip to Houston…which can easily give me the “illusion of control,” a phrase I often use to replace the word “worry.” Letting go of control is the same — at least for me —as letting go of worry. The other day I listed in my journal a few of the biggest things going on right now, just so I can look back and encourage myself by remembering that I actually did survive doing this all at once:

-Homeschooling 4 kids, and staying involved with their co-op as much as possible.

-Finishing up a build and making all the endless last-minute design decisions

-Getting ready to move, then temporarily “move” to Houston, then back again

-Coaching Hadelyn’s Basketball team

-Pandemic Parenting heart healthy kids AND a heart kid, always weighing risks and benefits of outings

-Getting ready for another open heart surgery on my 3 year old

-Starting a non-profit, and organizing its fundraisers

-Hosting Bible studies for the teenage girls at church

-Trying to maintain friendships, my marriage, etc

-ALL. OF. THE. MOM. THINGS.

-(Housekeeping did not make this list. Something’s gotta give, and my laundry has volunteered as tribute.)

I "should” be worried, and I “should” feel much more overwhelmed than I do. But I have learned to let go. Actually, no. I think I should say I have been forced to let go, and I’ve just stopped fighting it. Saying “I’ve learned to let go” gives me way more credit than I actually should have, because there is no way I would give everything up willingly.

I will get through this season, and I’m doing my best not to wish this season away — because as intense as it has been, I know that I will miss the fullness of it all. I don’t have to look far to feel a deep sense of purpose, and for that I am very grateful.

OK, I want a break, but I’m grateful. Yes, I can be both.

Worship and Serve

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When I can’t sing, I’ll write the word

That praises your name

Its glory tells a story

Mightier than shame

I’ll be silent

Only when You ask me to be

And when he throws stones, I’ll build an altar

Whose reach will be higher than me

Where is my faith? It is unseen, yet walks in front of me, more sure of my steps than my own two feet.

How do I prepare for an unknown future? I look at my unsure feet, find a foundation from the words hidden in my soul, look up, and take another step.

What keeps me from crumbling under the weight of responsibility? Nothing at all. I crumble into the safety of my teammate, the one He has given me, and together we rebuild. We find our faith, shore up our feet, and continue to move.

When in doubt, I will serve. When I grieve, I will serve. When I feel betrayed, I will serve. When I’m tempted to trust my feelings more than the truth, I will serve. When I’m serving alone, I will still serve.

There is nothing else to be done.