Sweet new heart momma, I know. I know this is not the Mother's Day you wanted, because I too have spent this special day watching my newborn baby struggle to breathe. I know the weight of the diagnosis you've received is overwhelming because I too have been overwhelmed. I know the sounds your voice will make as you grieve because I have made them, and I know the way your whole body will shake because I have shaken.
Read MoreThe 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 I can't help but become a little withdrawn when we have big medical things going on.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.
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.
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.
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
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.”
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.
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.
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.
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.
