Bucket Lists and Bikers

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

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

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

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 I can't help but become a little withdrawn when we have big medical things going on.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

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

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

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

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

T-Shirt Drive

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

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.

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.

The Write With Light Project

There is nothing quite like the experience of walking into a children's hospital. It feels like a sacred battleground. I'm sure walking in as a visitor feels different than walking in as a parent…and I envy what it must feel like to walk in as a nurse or doctor, ready and equipped to go to battle.

Inside those walls, I will often just sit and stare and try so hard to stretch my imagination far enough to move the veil and see what God sees inside those walls. Just like the hillside in 2 Kings, I would bet the hallways of a children's hospital are absolutely full of angels fighting all kinds of enemies, and comforting all types of patients.

God has not opened my eyes like I wish He would — but he has shown me over and over and over again pieces of the army He has provided for us. Every time I get an encouraging text, and offer to help, a prayer said on behalf of all of my children — I feel like I can almost see that army fighting my battles for me.

We are completely humbled by the help we have received. Four years ago, when we received Sunley's diagnosis, I began planning a fundraiser, called The Write With Light Project, to benefit a very special piece of Sunley’s team. The details have changed about a thousand times since she was born, and I'm doing my best to simplify it all with everything going on now, but I feel like it's time to deploy the army that God has built for us.

Texas Children's Hospital is the very first hospital dedicated to opening a “Fontan Go Initiative.” This will be a whole new sub-specialty of medicine that will fall under the umbrella of ADULT congenital cardiac care. Adult CHD care has not existed as a specialty until now, because only just now are these kids finally reaching adulthood! This Fontan Go Initiative will be the only place in the world focused solely on patients who have had a Fontan procedure and have lived into adulthood. The research and experience from this could DRASTICALLY improve Sunley's quality of life, as well as its length. It's hard to even put into words how absolutely magnificent this is for the future of kids like Sunley. Single ventricle heart defects are extremely rare — Sunley's specific anatomy is one that I can't even find on Google — and yet this hospital is dedicating an entire team to helping these kids. If that's not an army of angels, I don't know what is.

Will you please help me help my baby? On July 22nd and 23rd, 2022, I will be hosting a simple lemonade stand in Edmond, Oklahoma to raise money for this Fontan Go Initiative. All of the profits will be donated to this work. Will you please sign up to host a lemonade stand on July 22 or 23 in your town? When you sign up to host, you will be sent a “box of sunshine” containing all of the branding materials you need to market in your area and get the word out.

If you are unable to host your own lemonade stand, will you please share this video (below) and blog post with the world? We will also have ways for people to donate, as the fundraiser date approaches. My hope is that we could have a few stands going up all over the place in July, and with just a few people committed to making this fundraiser work, we could really make a difference for the futures of Sunley, and of every kid like her. Click here to sign up.

Click here to share the video.