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.

Grateful and, Like, Really Tired

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

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.

Grief and Re-grief and Pre-grief and Peace

I am not afraid to allow myself to grieve, and I hope you are not opposed to my sharing of it. It’s been so long since we were “normal,” that the process of re-grieving has gotten so much easier, and has become a quicker cycle. But it does still feel like hitting a brick wall. I still struggle with feelings of guilt for grieving anything at all, but I don’t fight the harder times as much as I used to fight them — I have learned to embrace the tougher parts of life because God has consistently kept His promises to bring His goodness into them. What a happy thing to happen to someone — to be taught how to rejoice in trials (James 1). I can’t completely let go of my human preferences to keep things rosy, but I am also not afraid of the many different things that could be taken from any of us at any given time.

All that to say, when I can’t sleep because I’m walking through West Tower at TCH, switching elevators at floor 3 to get to floor 4 where my sweet one sleeps in NICU4 because the CICU is full, I don’t try and force myself to fall back asleep. I get up, I pray, I write, and I worship. The Lord and I sit together and remember the days that were hard, and I thank Him for the beautiful days He has mixed in. I remember how I felt Him so clearly walking the halls with me, and I remember all the signs He sent, and I wonder which ones I missed. He fills the hard memories with a fondness that only the distance of time can bring, He brings me peace, and I fall asleep until His sunshine (or my sunshine) wakes me up. All four of my babies are still here. He has let us keep them all. That great mercy is not lost on me.

And the next time a wave of grief hits me, He will be ready. He is always ready.

When I’m dead and gone, my bones will still know the path to your door

Down elevators, past white coats, and through the corridors

My bones still will glow from the memory of holding you down

Radioactive memories, whose poison didn’t make a sound

When I’m dead and gone, those moments will be farther underground

My bones will still remember how I etched your body’s warmth in my mind

Or memorized its heaviness for one last time

A mother’s bones do not forget how to find the one she needs

No matter how old they get, the worst of memories they still see

Sunley's January 2022 Check-up

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.

There Was Evening

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

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.

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.

Answered Prayers

Trust God's timing. Always. While Sunley was having her cath, our peaceful little Cul de sac in Oklahoma had an active shooter situation. No one except the shooter was hurt. He shot at a neighbor, shot up a car and shot at police before being shot in the leg and taken into custody. That's a lot more action than our little suburban neighborhood needs! Thank goodness we weren't there, as much as we play with kiddos in the front yard! Hadelyn saw it on the news and recognized our home of course, so I called to try and comfort her. It was unnecessary, because she had already determined that the man must have just locked his keys in the car and was trying to shoot a hole to get them out. It seems to have been caused by some mental health issues, so please take a moment and pray for him — pray that he is given the right balance of consequence and forgiveness; a balance that allows him to heal from it all. The world is broken, as if we needed a reminder.

Back to Houston! We arrived to the hospital at 8 am and Sunley went back for her procedure at 9:50. She was so brave, and we met a new NP named Riley who we absolutely loved! She's one of those people that just instantly gives you comforting vibes and I knew she would take care of Sunley if she got scared on the way back there.

The whole thing was about 4 hours long, and we got hourly calls. Dr Qureshi had to make access at the groin, and on both sides of her neck, so she has lots of boo boos to watch and keep clean. He was finally able to coil off one large collateral vessel. It seems to be the same one by her left svc that we first saw at OU Children's on my 30th birthday two years ago! So it has been growing since then, and was positioned so that we could not see it on her latest echo.

After Qureshi coiled that vessel, Sunley's sats stayed between 85-90 for the rest of the day! Of course, she was still groggy and resting, but the team was very confident that we will not see low numbers again for a while. I can't wait to watch her play and hopefully prove them right!

Derek and I were both surprised by how calm Sunley was in recovery. We expected a lot of resisting rest, but she was so content! When she woke up, she just barely opened her eyes and said “ice cream.” And she got it. Lots of it!

We made tshirts for our family to wear back when we thought we'd be doing the fontan this week. The phrase at the top of the shirt, “Silenzio Bruno!” is from the Disney movie Luca. Luca has a voice in his head, named Bruno, who makes him scared to try new or scary things. So every time Luca is afraid, he makes the voice quiet by saying “Silenzio Bruno!” Sunley has been saying it every time she has to put on oxygen at home, and every time she has to get a shot, or worst of all, take off medical tape/stickers.

She did so great, but taking off all the tape at the end was BRUTAL. She was begging us to stop, and we tried hard to let her give us permission, but it just didn't happen. Those are the traumatic parts for a 3 year old, and I often wonder if it's better or worse for me to be the one holding her down. We got back to the hotel some time after 9pm I think.

This morning, Sunley had her consultation with the surgery team. As long as this coiled vessel continues to hold up her saturations, we don't expect to need surgery before next spring!! This is a wonderful answered prayer! I am especially grateful because the hospital is having to make very tight restrictions again for parents and visitors, after finally allowing 2 visitors just a couple weeks ago. I have to reiterate, the people refusing to mask or get vaccinated are really putting these hospitals in impossible positions. We, the high risk families, are paying the price for the choices of others. I will gladly discuss my feelings about the vaccine in private, but AT LEAST masking should be a no brainer. No one debated the efficacy of masks before 2020. And we had virtually no flu or RSV season last winter because of all the masking and precautions. Oh, how I want to rant, but I'll stop here. Please wear a mask if you are choosing to forego or wait on the vaccine. I know it feels like it doesn't matter, but I can introduce you to hundreds of families who are directly impacted by your choice. I say that with no hatred — it's just a fact. Ok, NOW I'm stopping.

One of the things I'm most grateful for on this trip was that we actually did get to see SO many of our favorite doctors and nurses from over the years! I wasn't sure we'd see anyone, and we saw (almost) everyone! I am just so impressed by the compassion from the team at TCH. If you ever feel like you can't trust the medical world, well then I think you need to spend a little more time in this place. The medically complex world is an alternate reality full of heartache, and deep deep joy, where commitment and compassion is unparalleled.

We are home tonight. We walked in to a clean house with completed laundry and fresh flowers on the counter, and dinner in the fridge. All thanks to my sister and her mother-in-law. I could list about 100 other people who have helped us this week, in ways that probably felt small to them but made a lasting impact for us. God surrounds us with his mercy all the time. He is so so good.