Just a Mother

in ,

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

in ,

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!

Hypoplastic Right heart syndrome

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.

Hypoplastic Right heart syndrome

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.

Bucket Lists and Bikers

in , , ,

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. 

T-Shirt Drive

in ,

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

in ,

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

in ,

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.

Sunley's January 2022 Check-up

in ,

Sunley had a cardiology check-up today in Houston, and it went so well! She really missed her siblings today, and kept asking for Sissy and Brudder, but overall she was so brave and funny with her doctors. We love seeing our heart family at TCH, even for these super short visits. Everyone who has ever talked to me about our experience knows how special Dr. Ayres is to us, and we are always so happy to see her. One of the nurses there today gave Sunley a handmade pillow, and it absolutely made Sunley’s day. She kept it with her for the whole trip. What a thoughtful, sweet thing to do. Sunley loved watching the echo of her heart this time, and it reminded me how she used to watch her numbers on the monitor as a baby. She told me before he started, “I think my heart will be yellow.” And behold, while measuring some fluid, a flash of yellow popped up on the screen along with the typical red and blue “stuff,” and Sunley whispered, “I knew it.” Yes, Sunley. Of course your heart is full of bright, yellow sunshine. We already knew that, echo or not. It was fun watching her be more engaged in the whole process. Seeing her start to ask questions about what is happening already gives me confidence that someday she will be able to handle this all on her own (Unless she still wants her mommy, which is fine by me).

Surgery is still on for April 19th with Dr. Heinle (J-Dawg…still trying to make that catch on), and the doctors will get together when the date approaches to decide whether or not she needs another cath before surgery. I think it is probably unlikely that a cath will be in the works, but we’ll do what we have to do. I didn’t ask much about pushing her surgery out further. I think that could have been an option, but it just feels like the right time. Sunley is starting to get winded more easily, especially when going up stairs — But let me tell you, that girl does NOT give up easily. “No Momma, I can do it” is an extremely frequent phrase in this house, and I’d be lying if I told you it didn’t make me really proud. I give Sunley a lot of praise when she listens to her body and slows down or asks for help, but it’s rare that she does this. She is truly a “Firecracker” (this road name was appropriately given by her motorcycle buddies — They even sent her a patch for her motorcycle jacket). All that to say, her body is showing us that it’s ready for this, and we don’t want to wait until she’s really struggling again, like she was in June. This will be her third open heart surgery in 3 years, which doesn’t include her two interventional cath procedures. Girl is a trooper.

Sunley was really nervous about going to the hospital this time, and her siblings had a REALLY hard time letting us go. Momma had a hard time, too. While I’m (obviously) insanely grateful for how things turned out after Sunley’s cath in August, that 3-month period of watching her body be so weak was very, very hard. I knew that we would get through it, but it was very heavy and very sad. It’s frustrating, but I feel so guilty any time I admit to having trauma from all of this, because I know so many people that have been through situations that are so much WORSE. I know of someone whose 2 year old had their 7th open heart surgery this month, and I wouldn’t have to look far to find others who have been through even more. Nonetheless, the gift of being a single ventricle heart mom comes with a unique heaviness. The same could be said for being a heart sibling…and of course for being a heart warrior. I was surprised at my reaction to this upcoming appointment. I wasn’t expecting any sort of bad news, and yet I just felt so scrambled in the week leading up to it. I felt like I could barely function — Couldn’t keep my to-do lists straight, and could barely focus in the evenings. Any time I thought about this appointment, my chest felt tight and I would start to feel nauseous. Maybe it’s just the finality of completing the single ventricle plan with the Fontan that feels so major.

Whatever the case, it’s been a hard week, and I’m glad that this appointment is behind us. We have 3 months from today to get ready for what could be Sunley’s last open heart surgery (unless they someday come up with a BETTER option than the Fontan!), and I have a very long list of things I’d like to have done beforehand. Cue my Enneagram 7 self putting too much on my plate. Who knows what will get done and what will haunt me in my dreams as a half-done task. What an adventure this will be!

I plan to post more in February, with a lot more details about what this surgery is, why we decided to do it now instead of later, and why it’s not a great solution forever. We also have some really exciting things happening between now and the Fontan — T-shirts, motorcycle friends, and some things regarding our fundraiser through Write With Light Project, which is in the process of becoming an official non-profit. I can’t wait to see where all of this takes us! Thank you all for the prayers. They continue to bring our family so much unending strength.

Go, Sunley, Go.


heart surgery

There Was Evening

in ,

Life has been a bit of a whirlwind lately. We typically keep a pretty slow pace, but ever since Sunley got sick in June, things have been so incredibly nonstop. The two oldest kids started soccer and Derek is coaching both teams, the house build has been “quite messy,” and I’ve been getting organized (well, trying) in preparation for next summer’s fundraiser. Oh, and there’s the whole open heart surgery thing coming up in April.

I don’t think we are meant to be so incredibly busy, though I know this is just for a short season. The house will soon be done, the surgery will be behind us, and our commitments to sports will reduce again — all in time. I have found it to be so important to keep space in my daily life, AND have found it equally important to be wary of what I put in that space (I’m looking at you, Tik Tok). One thing that really helps me to keep on keeping on is a little ritual I started several months ago.

I have to share a disclaimer first: This is all very “flowery,” and is much easier said than done. I do not do this on a perfectly consistent basis, but I’ve stopped considering that inconsistency to be a great failure. Several months ago, the kids and I were going through the days of Creation, and I was noticing yet again that “there was evening, and there was morning: The First Day.” I’ve always thought it was interesting that evening is listed first.

I have a VERY hard time staying “on” for the kids in those last hours before bedtime. As soon as we finish dinner, all I want to do is crawl into bed, scroll on my phone, and detox from all the noise and all of the “Mom, do bats have feet” remarks and questions. I know those whole-family minutes are precious and fleeting but after a day of homeschooling, cooking, and laundry (which I definitely do every day, and don’t ask Derek), I am in need of a refill. So, I took a note from Genesis, and I have implemented a routine of starting my days in the evenings. I have an alarm on my phone that goes off as the sun is beginning to set, and I make a point to go to my bathroom while Derek takes over with the kids and wash my face, change clothes — start my day. It’s nothing more than a change in mindset, and it really does make a huge difference for me. If there’s time, I will read my Bible, listen to music, or just sit on the porch swing as the sun goes down. I do not let myself fill this time with anything that does not lead my mind to Jesus. We don’t always have a magically perfect evening after this, but it at least creates space for me and my Lord to be together, just the two of us, before I jump back into the service role where He has called me to work.

With the crazy-busy seasons of holidays, family vacations, and school activities coming up, I really wanted to share this little routine. I wonder if other people may find it helpful as well.

“And God said, ‘Let there be lights in the vault of the sky to separate the day from the night, and let them serve as signs to mark sacred times, and days and years, and let them be lights in the vault of the sky to give light on the earth.’ And it was so…There was evening, and there was morning — the fourth day.”

Fontan Scheduled

in , ,

First of all, thank you everyone who has signed up to host a lemonade stand next summer! If you haven’t yet signed up, no worries — the deadline is not until early spring. I’m working on lots of things behind the scenes, and will soon have ways to donate and contribute to the fundraiser.

We have a tentative Fontan date! April 19, 2022 is our penciled-in date for Sunley’s next (third) open heart surgery. I will post more details about the procedure when it gets closer, but for those of you who are familiar with it all, we are expecting a non-fenestrated Fontan, which means that we are also hoping for pretty high saturations.

Sunley’s Cath procedure she had on August 11th seems to have benefited her. The saturation numbers still get low when she’s playing (not quite AS low), but clinically she looks much better and has more energy and less cyanosis! The high numbers we saw right after her cath (89-90) unfortunately did not hold like the doctors expected (can they please just stop making these optimistic predictions?!). But overall, I’m glad we did the procedure, as it definitely bought her more time before the Fontan. We have our next big checkup in Houston in January, where we will reevaluate the plan.

In the meantime, we’ve been a bit “hunkered down” again, surviving and trying to avoid this new surge of COVID and RSV going around. I find myself wondering if there will ever be an “after COVID,” and I know I’m not the only one feeling desperate, and even blood-boiling angry at times. But I remember the last time I felt this desperate, right after being hit with the longevity of Sunley’s incurable diagnosis. I really thought our lives would forever be “less than” from then on — and I was SO wrong.

We met some new friends recently, and they asked me how we are even getting through all of this. I told them very simply that I think more about heaven than I do about here.

There is a HUGE difference in my mental state, in my mothering, in my prayer life when I am thinking more about this life than the next. We are designed by God to crave things that we will only receive in heaven. We are not supposed to be satisfied here. And yet, I sometimes make myself miserable trying to fill up while I’m still HERE.

If you have spent the entire pandemic just trying to force-steer things back to normal, may I humbly (because I’ve force-steered sometimes too) suggest that you slow down, and let God and this pandemic take some things away? If, for you, nothing good has come out of this pandemic yet, then I think you may have missed a great opportunity. And I’m speaking from experience, because I have definitely found myself pushing back at times. What if my kids never get to (fill in the blank) again? What if, What if, What if…

Most of those questions can be answered with a simple “Then God will fill in the gaps.”

Go ahead and give up “normal” — traditions, plans, vacations, maybe even some “important” social activities; Give it up. Let Him take things away. Don’t force the “normal” into your life based off of the fear of something new. I have quickly realized that trying to force my plans into this pandemic only creates more chaos, both tangibly and emotionally. Our family has lost during the pandemic. But we have also gained. And just like with Sunley and her never-ending heart journey: Our hope is not in the outcome, but in the One who provides hope. Slow down, give in, and let God WORK. We might be closer to heaven than we think.

PXL_20210819_170522594.MP.jpg