Birthday Plans

Our Cath procedure is schedule for Wednesday August 11, my birthday! Woot. Due to covid tests and other consults, we need to be there August 9 (evening) through August 12.

The other 3 will stay at Tonya's house while we're away.

Hospitals are in a very bad spot right now, and this is a terrible time for anyone to be needing care, but here we are. They don't have a bed for her to stay on the 11th, so unless she's in very bad shape, we were told that it will be outpatient but we need to stay close by the hospital.

The hope is that during the Cath, Dr Qureshi will see a problem that needs fixing -- we are hoping that there are some collateral vessels causing issues. If so, our hope is that Qureshi will be able to coil those off, and this will hopefully result in higher saturations for now. If this happens, we will plan for a fontan surgery in the spring.

If the cath does not find a solution, then we will be having a difficult discussion with Dr Heinle, the surgeon, about what's best -- a fontan now when the hospital is like it is or a very diminished quality of life until the spring, not to mention a very risky flu season for us. I have no idea what he will recommend. Please pray for the doctors, nurses, and all of the scheduling staff. They are absolutely flooded with daily difficult decisions, and I wouldn't want to be in their very under-appreciated shoes.

Prayers. Somehow it will all come together.

It's Time to Say It

I have seen a record high number of posts today making light of covid, making fun of mask rules, and taking a stand against "fear." If you know me at all, you know that God has not allowed us to be consumed by fear. You also know that my choices during the pandemic have had absolutely zero to do with politics.

You already know that we are currently trying to find a place for my daughter at her hospital — and we will find it — But she would have already had her MUCH needed procedures if it weren't for the surge in COVID and in this shocking summer RSV. My spunky, perfect 3 year old has oxygen saturations in the 70s if she is resting, and in the FORTIES if she plays. Today, a young girl asked my kids to play and then casually mentioned that her little sister has covid. Can you please understand how disheartening that is?

I am at the end of my rope. The last thing I want to do is offend anyone. I am humbly begging you: if you do not choose to get vaccinated, will you please wear a mask? Will you please stay home when you are sick? If you have asked me how you can help, but see a need to take some political stand against masks, then I urge you to consider your priorities — Spiritual morals should never take a backseat to political preferences. Jesus gave us a really good example of what to do during political unrest: serve and encourage each other in all humility. What we need is compassion; not a revolution.

MRI and Cath Date

Welcome to our roller coaster. If this post is messy, it’s because I am still processing our news, while also parenting, and all the things. I am a mess but I have such peace. My husband is an absolute rock of a man and never waivers. We have an ARMY praying for us. And God is so present, always. I made a blog update last night at 11pm, but forgot to post it. Since then, everything has changed. Below is the original update, and below I will update with the latest since this afternoon. I think this is a good glimpse into how quickly we are always ready for things to change around here:

Update as of August 3rd:

Our biggest news this week is that we have a date set for our MRI and Cath: September 22nd! This was the soonest we could get this scheduled, and I’m relieved with the fact that it gives us a minute to figure things out. The team at TCH worked hard to make this happen. To minimize her procedures, we got the MRI and Cath teams on the same schedule — Sunley will be put under and intubated for the MRI next door to her Cath room. Once the MRI is done, they will open the suite doors and roll her into the cath room where Dr Qureshi (a favorite of ours!) and the team will perform her cath. I have some more questions for her doctors about the cath, but my understanding is that they will be checking her pressures to make sure she is a good candidate for the Fontan procedure, which we fully expect. Dr. Qureshi might also coil off some collateral vessels if Sunley’s heart has developed more of them. I’m actually not sure why we are doing an MRI, so I will ask her cardiologist when we speak next — I’m assuming it’s just so Dr. Heinle and the surgery team can get an extra-accurate picture of her heart before they get in there. I had to set up a dental exam for Sunley here, get a clearance form, and had to get her a prescription for one dose of amoxycillin to take before the dental exam. All of this scheduling was a series of phone calls, leaving messages, etc. I was very thankful that day for helpful and polite scheduling teams!

I have been slowly trying to take on a few more day-to-day tasks that have “fallen by the wayside” over the past month-plus. We’ve started a light homeschooling load and will ease back into that routine, and I’m trying to take on a bit more housework. It’s funny how these things become so burdensome when such a big life change is thrown at me. I’m sure some people can probably keep up with these things better than I can, but I’m giving myself a lot of grace in these areas for now (and being SHOWN a lot of grace by anyone that stops by for a visit!). Everyone has advised me not to worry about these things for now, and I will gladly accept that advice! It truly has allowed me to slow down and focus on only the highest priorities right now. The other night, after planning to cook dinner, I just didn’t have the grit to do so, and I went by the drive-through at Panera. It’s a little pricey for our family of five eaters, but I did it anyway. Of course, when I got to the window, I was informed that the driver in front of me paid for my order because “God is good and He always provides.” Shocker. Thanks for the wink, Lord.

He always provides. Yesterday, I was feeling a bit overwhelmed with all the tasks that absolutely must be done before we leave next month for Houston. I was considering quitting yet another thing I had volunteered to do for the new school that my big two are starting in a couple of weeks. As I was thinking about it, I got a text message from a new friend that read, “Hey, don’t you have some responsibilities coming up with Cimarron? Would it be helpful if I took those over for you?” Pre-heart mom Liz would have said “Thanks, but I can do it!” But God has taught me (SHOVED me into learning) to accept help. What a friend He has sent me. And we have had so many helpful offers and words of encouragement just like her’s. Seriously, the sweet favors and encouraging texts, cards, and phone calls are too many to list. You know who you are, God knows who you are, and we thank you. He always provides.

Last week, another dear friend, Anna Brown, who is on her own journey of mothering rare, sent me a message on Marco Polo specifically to encourage me with this verse from 2 Corinthians 4:

But we have this treasure in earthen vessels, that the excellence of the power may be of God and not of us. We are hard-pressed on every side, YET NOT CRUSHED; We are perplexed, BUT NOT IN DESPAIR; Persecuted, BUT NOT FORSAKEN; Struck down, BUT NOT DESTROYED — always carrying about in the body the dying of the Lord Jesus, that the life of Jesus also may be manifested in our body.

For we who live are always delivered to death for Jesus’ sake, that the life of Jesus also may be manifested in our mortal flesh. So then death is working in us, but life in you. …

[We] know that He who raised up the Lord Jesus will also raise us up with Jesus, and will present us with you. For all things are for your sakes, that grace, having spread through the many, may cause thanksgiving to abound to the glory of God.

THEREFORE WE DO NOT LOSE HEART.

Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of GLORY.

What purpose our suffering, any level of suffering, can have if we just empty ourselves and let God move. Deep sorrow. Deeper joy.

*****************************

OK, now for the update as of this afternoon:

This morning, I left messages for Dr. Heinle’s surgery coordinators, as well as our cardiologist, Dr. Ayres. Ayres called me this afternoon, and explained a few things:

First of all, the MRI was ordered by the cath team, not cardiology, in order to reduce Sunley’s lifetime exposure to radiation, since we know that she will always have medical things like this in her life. That’s a good thing of course, that TCH is thinking about the big picture for our kiddos and reducing those exposures where they can — but in this case, getting MRI and Cath on the same schedule is the reason it was put off until late September. Sunley’s cardio team doesn’t feel that it would be wise to wait that long for intervention, so we are canceling the MRI and moving the cath date way up. I am waiting on a call back from the Cath team to reschedule this. It could be very soon, so we are very much in limbo. (And I am regretting having dental work and a temporary crown done yesterday, because I’m not sure how I will fit in getting a permanent crown put on, and this temporary one was kind of a disaster and my dentist expects it to fall off and…I digress!) All of the “I guess it’s good we get to wait until September” and all of the bucket list planning, post Fontan vacation planning, Davis’s birthday party…all planning is just gone.

Now for the second part of the update. Sunley’s surgeon suspects that she has some damage caused by the sickness she had back in June when all of this started. He also noted that it’s possible that by doing the cath (in which they might be coiling some collateral vessels) and by giving things a bit more time to heal, Sunley’s numbers may come back up well enough for us to wait for the Fontan until next year.

What a roller coaster. I thought I was going with the flow, but now I’m purely liquid. I have absolutely no control and no illusion of control. I have no idea what to pray for. Of course, we want to wait if we can! What an incredible answered prayer that would be! But seeing how much a minor virus knocked our girl down makes us very nervous for this flu season — not to mention the incredibly high number of RSV cases happening, and of course, as always, COVID. We also can not rent an apartment until we know if we are doing surgery, and can’t really make plans for school, for our homebuild, for our kids, Et-freaking-cetera.

Regardless of what happens, God is moving our story along in ways I did not expect. I have a battle song always playing in my soul, and this news that the Fontan may get put off again certainly feels like God is saying MOVE, MOUNTAIN. Pray with me, please.

The Waiting Game

While we wait for a phone call with cath and surgery dates, we sit in this weird limbo of preparing to prepare. I think one of the hardest parts of being in the medical world is all of the waiting. It is nauseating, like falling from the most beautiful view, but slowly and with nothing to catch you on the way down. I'm glad that Sunley has a team at TCH that truly advocates on her behalf. The hospital is VERY full, but I know they will get her in. The reason for the waiting is that they are trying to get surgery and cath on the same page, and that can be tricky. Sunley is 29 pounds, and 30 is the preferred minimum for the Fontan, so no hold up there. The cath will determine if her heart is a good candidate for the Fontan, which everyone expects to be the case. TCH does not do fontan procedures during flu season, so that's part of the rush in getting it now.

I still can't really believe this is happening. But each day, I have a choice to dwell on the negative aspects of it all, or just suck it up buttercup and make the best of it. The more I let go in prayer, the better I feel.

Today, I went shopping for decorations and play activities for her hospital room. It's a very difficult wave of emotions to describe, picking out all these adorable little girl things while picturing the images we’ll be seeing. It feels so lonely walking around a store with no one there who knows what is happening inside my spirit. I suppose it feels similar for anyone grieving any sort of loss, and I often wonder if strangers around me are suffering too. God has done some really incredible things through my (not so) random interactions with strangers.

One of those interactions happened just a couple months before the pandemic. It was December of 2019, and flu season, so we were pretty quarantined. One Monday mid-day, I decided to take the kids to the mall. I knew it wouldn't be crowded at all, and a change of scenery sounded wonderful. We ate at the food court, and there were only about 2 or 3 other families there. One of those families sat near us, and asked me how I came up with Sunley's name. I told her that her middle name is Summit, which came because of a Bible verse that popped into my head when we received her diagnosis. This mother of two asked me more questions about Sunley's health, and listened so intently. She them told me that she was born in the early 80s with a very rare heart defect, and had a transplant when she was 11. She was now an adult living with that same transplanted heart. This woman started pouring into my soul all kinds of deep and wonderful advice about parenting a young girl with a serious health issue. I won't share all of the details, but her advice was beautiful and personal, and incredibly encouraging.

Someone, I dare you, try and tell me that God did not orchestrate that. Oh, how He loves us.

Tuesday night, after getting the news from Houston, I sat on my porch for just a few minutes while the sun was going down. And just as I expected, God sent me pink clouds, rustling leaves, a beautiful cardinal, and a whole fleet of fireflies. Oh, how He loves us.

So I can walk these aisles of toys giving temporary joy, aisles full of kids who aren't in the hospital, and I can do it with gratitude and joy — because as He cares for these strangers, He also cares for me.

Time for the Fontan

The good news we got today is that Sunley does not need to continue using oxygen; the bad news is that she is not better -- the oxygen simply is not helping. We did not get the news we were hoping for, but of course it could have been worse. We've decided to go ahead and schedule Sunley for her pre-Fontan Cath and her Fontan surgery, and as soon as possible -- like in the next few weeks if we can swing it. In fact, the doctor asked if we brought a packed bag (we did), because she wanted to get us on the Cath schedule NOW. There weren't any openings because the hospital is VERY full, so we came home and they will call us with a date soon. This was not "supposed" to happen this way -- the pre-Fontan decline is usually gradual, and we were expecting to have much more time to prepare. I wish we knew what caused this. The doctors said that her heart looked the same as last time, when we got the news that she was doing so well. I can’t help but wonder if this would have happened without that stupid tiny cold she caught. We’ll never know, and I won't spend much time on the what-if’s. As I said in 2018 when we got her diagnosis — Job never got the why, but he did get an “I AM GOD AND YOU ARE NOT,” and that’s good enough for me.

Right now, her team is trying to get her scheduled the same week that my sister is having her first baby, the big 2 kids are starting in a new part-time school, Davis is turning one, and we are in the very chaotic final stages of our home build here in Oklahoma. I can't imagine a worse time to do this surgery. But, I am aware that I am unaware of the big picture that I have trusted God with all along. Over the last month, as Sunley has continued to struggle, I have just prayed "Your timing, Your timing" over and over again...and I'm still waiting for my feelings to follow my words. Because I definitely don't feel like this is good timing.

To be honest, I am extremely angry, and I have nowhere to put my anger. I'm not angry at God because I know He will carry us. I'm not angry at the doctors, because they didn't cause this. I'm just angry that we're having to do this in such a rush, and I'm angry that things didn't go as we hoped. I'm angry that Sunley's perfect heart is not supported by this very broken world, and I'm so angry that she can't thrive here without SO much medical intervention...even though I'm incredibly, deeply grateful for those medical interventions. Angry, grateful, sad, hopeful, and very very tired.

Part of the reason I'm so upset is because this whole thing has been extremely reminiscent of Sunley's diagnosis process, which you can start reading about here. We had 3 misdiagnoses, and at one point, Dallas Children's told us that she was biventricular, and went on and on about how terrible single ventricle life was -- only to call us two days later with the devastating correct diagnosis. This last March, we were given this amazing news that Sunley would likely be fine for a year, only for her to plummet 3 months later. It all just feels eerily similar. And while I know it will all be ok, I'm just angry over the roller coaster. We made plans. We signed up the kids for an awesome new part time school, and for soccer, and ordered more chickens (can you ever have enough chikens?). I started planning my last first birthday party for Davis and pictured what this year could be after such a rough 2020.

We must be doing really good work for the Lord if Satan is trying this hard to knock us down. Jesus come soon.

I'm not angry with God, but I'm so disappointed and frustrated with my own lack of understanding. I thought maybe He would do something big and we wouldn't need surgery yet, and I'm just so sad that we didn't get an answer like that. I have peace because I know He cares for me and hurts with me, but I'm so so sad.

I never complain about comments made to us, because I never want people to feel like they might say the wrong thing. But, please, do not say "At least this surgery will be over with and behind you." If one more person says that to me, I might just lose it. Doing this surgery at 4 years old would have been much, much easier on all of us -- at least according to my limited understanding of the picture in front of me. It is what it is, and I won't mope around about it, but I certainly preferred a different plan. And I doubt this will ever feel "behind me." Sunley’s care is palliative, and I don’t want it sugarcoated. This surgery creates a cardiac anatomy that can be very hard on the body, but it’s our only option.

Somehow, we have to make plans to be in Houston very very soon, and take all of our kids - we desperately want to stay together this time. We have to figure out who is coming to help with the three healthy kiddos (praise God, we have lots of offers!), find where to stay, etc. I can't make those plans until we have an official date, and even then, our date may get pushed. TCH is FULL of patients, and canceling procedures left and right. It's possible that we could rent a place, take our whole family there, and then the surgery could get postponed 3 times. A full hospital also means a lot of "pushing for discharge," which can be extremely annoying and nerve-wracking.

Now for my prayer request. There is a very small possibility that Sunley's heart has developed some collateral vessels that are contributing to her low numbers. They will likely coil those off during her pre-Fontan Cath. Doing that MIGHT make her numbers higher. IF her numbers get higher after her Cath, and IF it seems like waiting for the fontan would be beneficial, then that is something that could happen. I don't know if that's really what we want to happen, but please pray that whatever happens in that Cath will be what's best for Sunley long-term. There are so many possible outcomes, and everything is a series of delicate judgement calls. We need God to guide us and her doctors in these decisions.

Please also pray for our family to enjoy these next couple weeks before surgery. We are going to try and come up with a “mini bucket list” for our family and just soak in all the joy we can until our next chapter. I’m predicting lots of snuggles, and way less cleaning.

I’ll let everyone know when we have a date!

Fighting a Cold Pt 3

I wish I had news, but Sunley is just not getting better. I'm as prepared as I can be for whatever news we get at her appointment in Houston in 2 weeks. I'm also trying to get out of survival mode and start making this our new normal.

Photo by Lori Faber

I'm trying to be a little more productive each day, and find our new groove. I have to reset my mind so much throughout the day, and redress myself with the armor of God over and over and over. Knowing we may be getting another curveball soon is quite heavy, and the waiting is always the hardest part.

Yesterday, I decided to load up all 4 kids and our oxygen equipment and go to Target, just to prove to myself that it could be done. I've been missing so much the everyday outings we used to take, and a grocery trip with a cart full of kids sounded so nostalgic. I had a very low bar for success, and we just took our time. We parked right next to the cart return so that I could wipe it down and fill it up with our equipment without having to drag it all in. We very slowly made it from the car to the cart, and stopped at every aisle the kids wanted to check out. It was a long, unrushed grocery store trip and it was perfect. The kids wanted to do the self-checkout, and so once again we took our time letting each kid have a turn while Davis drank a bottle. Toward the end, Davis started crying, but still we took our time and big sisters played peek a boo with baby to pass the time.

A woman at the station next to ours made a point to ask me how I wasn't falling apart. Four kids is no easy task in target, and I'm sure she noticed the oxygen and equipment on Sunley. I just told her, "I am falling apart, but Jesus is filling in the gaps." And I say none of that to boast, but just to share that it's possible to be completely falling apart and completely okay simultaneously. I don't have to be "on" because I've given Jesus the heavier portions of the load we're carrying. And I've once again stripped away all of the extra in my life. I've un-volunteered for things, accepted help (babysitting, meals, etc) from all of our angels, and leaned even further into prayer. I am so far past empty that I have no choice but to fall on Jesus. And that's a pretty fulfilling feeling.

So many have asked how to help, and I'm happy to tell you that I've been working for a few years on an idea for a fundraiser for Sunley's hospital. I'll have all the details worked out soon, and I can't wait to share it with everyone. This idea has been brewing for quite a while, and I can't wait to put it all into action. We are so blessed to have such an incredible support system here and around the country (and even in a few other countries). Thank you all for the prayers, and please do not stop praying.

I'm not ready to give up on praying for a non-surgical option for Sunley. I do NOT want her to go through yet another open heart surgery right now. I know that day will come, but I'm praying it's not that time for us.

Fighting a Cold pt2

It's hard to believe that all of this started almost a month ago. We haven't had a normal day in so long. At her worst, Sunley spent three or four days on oxygen all day and in my bed, only getting up to go potty. Even on 5L of oxygen, if she moved at all she would desat as low as the 40s. It was very scary for us, and it feels all like a blur. Her saturations shouldn't get below 70 or over 88, so it's a constant game of adjusting her oxygen support to keep her in range - absolutely a full time job. It doesn't help that technology still has a LONG way to go in getting accurate saturation levels. Those pulse oximeters can be so finicky! Thank you to everyone who texted, prayed, sent meals for us. We had plenty of help, and the load felt that much lighter. My mom asked if it would be helpful for her to come, and I don't think I even let her finish her sentence before I said YES! She arrived yesterday with her extra set of hands, so I know this week will be even easier. Our big two kids have been amazing troopers, and so incredibly compassionate and empathetic with their sister. I am very proud of them. Davis doesn't seem to care, as long as she gets fed ;)

We are crawling slowly and steadily back toward our normal. Sunley is doing much better than she was a couple weeks ago, and every day is just slightly better than the one before it. She still has to do oxygen to do any sort of movement at all, but when she desats, the numbers aren't quite as low as the were. Sometimes the oxygen keeps her from desatting at all. (When I say desat, I mean her oxygen saturations get below 70. Her normal range is 73-84)

I spoke to Sunley's cardiologist in Houston, and she does want to see her now instead of next March, like we originally planned. Our appointment is at the end of July. They'll do an echo and all the heart things, and we are praying that nothing has changed since her last appointment. Please pray with us that it is not time for her Fontan surgery. We absolutely want to wait another year. I think we are all a bit surprised how hard her body was hit by nothing more than a low fever and a runny nose. She only had symptoms for a few days, and they were so mild. So that's a bit alarming, and a good reminder for all of us that we were doing this whole germaphobe thing long before 2020, and we still need everyone around us to use caution when they are feeling sick. That used to be an easy conversation to have -- now it seems to be offensive and politically charged. How silly.

We are so ready to see our spunky girl on the tball field again with her big brother, but we know we need to be patient and let her body recover at its own pace. We've let her push herself (almost) as much as she wants, and we just add oxygen and let her choose how active she wants to be. But this girl has no stop button. Which makes me proud, but also has me watching closely. Go, Sunley Summit! (But you don't have to summit EVERYTHING).

Sunley has Hypoplastic Right Heart Syndrome. Specifically, her anatomy is no right ventricle, DILV/DOLV, TGA. She has had a PA Banding, atrial septostomy, Bidirectional Glenn, and a DKS procedure. We are expecting her to need a Fontan next.

Fighting a Cold

Sunley,

Your sweet, snuggly little chubby perfect 3 year old self is snuggled in my lap while I write this. You are strong. And I'm sorry that you have to be. When we were given your diagnosis, we prayerfully made the decision to fight for you before you could fight for yourself. We weren't always sure that we were making the right decision, but once you were born, it became clearer each day that we had chosen correctly, because of your fiery spirit. You too would have chosen to fight, if you'd had that choice. I will always give you the space to push yourself as far as you'd like. But anytime you don't feel like fighting, you can crawl back into my lap and I will do it for you. There is an unseen army fighting for you, and I call on them often.

Love, Momma

Sunley is not doing well, but we are still at home, thank the Lord! I visited with the TCH team today, and we all agreed that she wouldn't be getting anything at the hospital that we can't already do at home.

Most of you already know that two weeks ago, Sunley had 2 complex febrile seizures. We called an ambulance and went to OU Children's. We were only admitted for 24 hours, and they ran all the tests we needed to confirm febrile seizures, and not something more severe. She didn't have any more fever after that, but on Tuesday showed symptoms of a minor virus — runny nose and a little bit of a cough. Since then, her symptoms are basically gone, but her saturations have continued to get worse and worse.

Sunley typically has oxygen saturations between 72-82 (Healthy people stay around 97-100). Right now, if she walks across the room, she dips into the forties. We've seen as low as 35. This is with VERY low activity. So right now, she is on oxygen all day instead of spot oxygen, and any getting off of the couch is a planned activity. We get the oxygen turned up, and monitor her numbers the whole time. Going potty is a big event, too. All this because of an itty bitty virus that she picked up somewhere.

We are basically doing the hospital thing, but at home. And together is always better, so we are thankful for that. But we are tired. Sunley is frustrated. And I'm having to let go of perfect parenting again. So much tv, no cooking, and just no moving forward yet. Summer sports is on hold for Sunley, but not for Ruger and Hadelyn -- unfair for someone no matter how I handle it.

We need to see improvement soon for Sunley's numbers. I don't know what the plan will be if her numbers don't go up, and I don't want to know.

I've had to fight so much the mama bear urge to rip off all the cords, take this girl (who feels FINE) outside and let her play.

I never think about the before, but today I was in the middle of an adorable, giggly, diaper change with Davis and just blurted out "I want to go home," and burst into tears while Davis laughed at me. I thought about our first house in Midland, my lime green front door, the funky fireplace that I tried and failed to recreate in our new house, the add-on that we were planning on doing after baby number 3. I thought about how we could have brought Sunley home to that house and continued life as it was. I thought about what summer for a 3 year old "should" be. For a little bit, I just let myself feel sad and feel sorry for me and for Sunley.

And then I stopped crying. I said "okay" with a deep breath that felt more like a prayer, picked up my baby, and walked back to the couch to check Sunley's levels.

I wouldn't trade this for all the lime green front doors in the world. And that's the secret gift of being a heart mom. Deep sorrow. Deeper joy.

Sunley's Motorcycle Birthday

Today we celebrated Sunley’s third birthday! I really can’t put into words the very complicated emotions that birthdays bring in our house, and tonight I am too tired to even try. All I know is that today was special. A week or so ago, I started trying to find some kind of biker club that could bring a few motorcycles to her birthday party. I found Bikers for Christ on Facebook, and sent them a message. They responded quickly, shared my message, and before long, we had over 200 bikers wanting to participate in Sunley’s birthday drive-by. My phone was blowing up, and Bikers for Christ took charge and organized the whole thing for us. Not everyone was able to make it, but I think we ended up with over 50 bikers altogether! I wish I could have met each and every biker, but I know there were some from as far as Kansas who participated. Some had amazing medical stories, many had very powerful testimonies, and ALL of them showed up big for our Sunley. They brought several personalized, encouraging gifts for our sweet girl. I am going to have quite a difficult time trying to thank everyone. Harley Davidson in Edmond donated gifts, a Catholic church in Moore presented us with a beautiful cross to borrow for a while as we need it, one sweet man made some origami pieces with encouraging notes, another brought the cutest stuffed unicorn, and there were more! At the conclusion of the drive, Bikers for Christ presented Sunley with her very own motorcycle. She just kept squealing with delight and has ridden it all afternoon. 

Ruger and Hadelyn showed their true colors in being 100% on board and excited. They are the most amazing big siblings. And in true Davis form, she just chilled out and was a complete trooper. I know we are blessed to have such a close-knit family and I am so grateful. My mom made the most gorgeous birthday cookies for Sunley AND for the bikers, of course!

I have to especially thank Lori Faber, too. I called her last night and asked her to come take photos on my camera so I could actually be in the pictures and enjoy the day. Anyone who knows Lori knows how much she just GIVES of herself. She did the same when Sunley was born and dropped everything to be with me. Lori, you are one of my favorite humans in the whole world. And you have a gift.

I couldn’t help but let myself cry during the parade of bikes. I wasn’t expecting to be emotional, but I was just completely overcome (again) with how God uses us ALL to encourage each other, when we make ourselves available. Today, 50 strangers made me feel even closer to my Jesus, and made me feel just a little braver for whatever the future holds for our little biker.

I am forever grateful to our biker angels. And something tells me we haven’t seen the last of this amazing community. I am beyond humbled. We have the most unbelievable support system.

I will never forget this day.

Cupcakes

Sunley’s THIRD birthday is fast approaching, and we are celebrating BIG. We have more than just a birthday to celebrate! Sunley recently had a check-up in Houston at TCH, and we really thought that we may be told to start preparing for her Fontan procedure. Instead of needing surgery this summer, Sunley’s echo looked strong enough to go a WHOLE YEAR between appointments! Lord willing, our girl will have no pokes or hospital trips for a year!! We are blown away. I was praying so hard that she wouldn’t need surgery yet, but I never would have dreamed that she would be doing so well. Yes, she will still need surgery, but hopefully we get to skip managing a toddler’s open heart surgery during the COVID craziness. Now we are praying for the health crisis to be over before her surgery, so that we can be there together as a family, and not have to switch off caregivers, or pass up visits from siblings. God is doing big things every day, and I am believing He will give us this win. Why not pray for another year?! Am I being too hopeful? Peace. I will pray for peace with the timing of her next surgery, whenever that may be.

I also have another God-is-here story to share: In January of 2018, when we got Sunley’s final blow diagnosis (after a LENGTHY misdiagnosis process), we left the exam room and sat down to eat lunch at the cafeteria. I remember the exact table where we sat, as I would often visit that spot in the following year when I needed to feel physically close to Jesus. I got a phone call, but missed the call, so it went to voicemail. That voicemail was a friend who had just heard our news. He poured out his heart in that voicemail, and I think it was the first time I truly experienced what it felt like for someone to “speak life” into me. His words were PERFECTION, and absolutely everything I needed to hear. That voicemail physically, emotionally, and spiritually built Derek and me up in a very low moment. I was weak, I listened, and I became strong. Of course, I meant to save that voicemail, but somehow I lost the recording, and I was devastated. Recently, I reminded Derek of it, but it has been so long that I had forgotten the exact words and it made me so sad that I had failed to save it. I poured over all the old files I had, every recording, every video, through 3 hard drives, and I just couldn’t find it. It was gone. I prayed again and just said “God, I know it’s gone, and I know You don’t work this way, but I really would like that voicemail back.”

Guys. Not two days later, I got an alert on my phone that said something like Your phone memory is almost full, click here to delete old files. And there it was. I could barely breathe. I called Derek in the room, and we listened to it together and cried. Derek said, “I can’t believe you found it,” to which I replied, “I did NOT find this — GOD literally threw it at me!”

Of course, I called that friend and shared my lost coin story with him. I knew I didn’t NEED that voicemail back, but I sure wanted it, and I am still so overjoyed that God gave it to me! My friend told me, “Sometimes, God’s fatherly love shows up in the same way a grandfather gets joy by handing his granddaughter a cupcake. And you have been given a cupcake.” That voicemail, Sunley’s last checkup — God is giving us more than we could possibly had ever hoped for and I am fully absorbing that joy. Praise God for cupcakes.

(You can hear the voicemail in the beginning of this video)