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23 May 2024

Summer Forest Paintings | Part 1

blog post by Lindsay Sherbondy

I'd like to tell you about two new paintings I've created, but I think in order to do so, I'll need to tell you a little bit about how I'm feeling about my life these days. I want to say that I'm going to just say how I feel, without making it pretty, without caveats. I'm not an expert in grief or raising a child with disabilities. I'm not a counselor or pastor. I'm just going to share my unfiltered thoughts as an offering of one person's experience into a vast pool of experiences making up the human experience. Usually, I like to wrap things up with a bow, but for now, this story is an unraveled silk ribbon, waiting on God, waiting to see what He decides to craft with it. 

The good news:
Phoenix is incredible!! He's adorable and creative and funny and perceptive. Gah, he's just amazing. He's my little Harry Styles and loves playdates and the pool and making TikTok videos on my Lindsay Letters account. (Ha!) He took this photo of himself – a photographer/videographer in the making.

phoenix with a daisy

Eva experiences joy almost every day – she understands humor, she gives big smiles, she loves her people, and facials, going for walks, and reading with D & Savta. She loves hearing how you all love her.

We have a beautiful home that addresses every need of Eva's and ours.  We have incredible friends and family. 

We laugh every day. There are moments of beauty and delight and goodness and God's grace peppered throughout our life and those are the mana that sustain us. Amen.

And also, this is really freaking hard.

Then again, it's been "hard" since I became a married adult, and it's been "really hard" since Eva's accident in August of 2019, so it seems like I might need to come up with more descriptive adjectives than just "really" and "hard," because while this season is really hard, it's been differently hard. Maybe that counts for something? 

I think if I could summarize, the things that makes this post-traumatic-event life so hard are the following:

1. We're in a state of active grief.
Most often when I had thought of grief, I thought of the absence of something. Death is so final. Divorce is so final. Loss is so final. And then what we experience is the void where something was. I think that one of the beautiful things about participating in a process of grieving is when you experience moments of this great void, you use that time in the void to feel the things – to walk through the stages of grief (albeit out of order) and figure out who you are on this side of it. You welcome the grief as love for the lost, and learn to live life with it as a sub-par replacement for what once was. (And, if it's the loss of a person, someone you will see again in heaven). In my other experiences with grief, I remember feeling that the void was so vast that I couldn't believe how empty it felt without the thing that was missing... without my grandpa or grandma, without living in the same house as my dad, with the death of someone I'd been praying for a miracle for. And in those moments, it felt comforting to sit in the grief and almost welcome it as the thing that fills in that big empty space.

But with Eva, there is no void. It's deep grief, but with no time and space to grieve. Our lives are packed. There's the absence of who she was and the hopes and dreams we had for her, but also, she's still very much here. And thus we have, like, a SHIT TON of stuff to do. We are Eva's full time caretakers and parents, and it's a lot of work. A lot. She has a super high level of disability, but is also extremely medically complex. I'm exhausted to the bone and have been in survival mode for so long that I don't know who I am not in a state of hyper-vigilance and tasks and lists and calls and appointments and medicine measuring and alarms beeping. It's like the feeling of being a new mom, kind of. You're immersed in breastmilk or formula and diapers and snuggles and crying and sleepless nights and evaluating and the uncertainty of each day... it's like that, but with no promise of it ever ending. Or being different. It's like that, plus, knowing that at any moment, any day, we could loose her. She's mostly really strong and doing well, but we know full well she can turn on a dime, and the veil between earth and heaven for her is so transparent, the only thing that reminds me it's there sometimes is the feeling of fear that's a constant pain in my gut. She's amazing, she's a miracle, and this is really freaking hard. They can all be true at the same time, and they are.

2. The shrapnel,
as I like to call it. I think anyone who's experienced any devastating life event will understand me when I say that one of my biggest issues with God is like, okay, I understand that Eva's accident had to happen. (Too much to get into now, but that's how I feel). BUT, there's all these things that have happened in the wake of the bomb that went off that feel SO EXTRA UNFAIR. For example, but not limited to... this has been super hard on my marriage. Dugan and I at our best are the funnest, most creative, entertaining sitcom of a situation (if I do say so myself). At our worst, we are oil and water. To do this together has been incredibly trying. Iron sharpens iron, but in stress and sadness, we're two limestone rocks, mostly sanding each other down. I believe in us, and our commitment, but I share that to say that if trauma or some crazy life event has made things challenging with you and your parter, hear me say: You are not alone.

This post-accident life has difficult for Phoenix. He's overall doing great and we are being really intentional about helping him process (ambulances showing up, alarms going off, the uncertainty of our rhythms, and who Eva is now versus the big sister that snuggled and smooshed him 24/7), but in the same way that this will shape him into a caring and compassionate person, he also struggles with things as a result of Eva's accident that break my heart and feel so unfair for him. And there's the financial stress. The tension of having extra needs that cost extra money, but limited time to make the extra money to support the needs is tough. Since August 2019, we have spent well over 400 days in the hospital with Eva. To weave in and out of engagement with Lindsay Letters has been extremely challenging, but at the same time, this business is how I support us. No parent should have to work while holding a surgery room pager... to have to take a zoom call while their child is getting a central line placed... but so many caregivers do. So many. We are not alone, and I'm actually just so grateful that D and I have had jobs that have allowed this kind of uncertainty. Most caregivers don't have this priveledge, and it's heartbreaking. 

Anyway, all of those elements combine to make a cement mixture so heavy and thick, it's hard to not want to escape it somehow, because it feels too impossible to hold this long. Sometimes it feels like we're standing in quicksand, watching the world breeze by on trendy electric bikes.

3. YOLO.
Imagine you were told you only have a short time to live. You didn't know how long, but it was shorter than you'd like. What would you want to do with the time you have? I have a dear friend who was told this recently, and she struggles with wanting to make memories, but not always feeling well enough to do so. I can relate to this, completely. On top of the active grief and shrapnel, I also feel this insatiable gratitude that WE STILL HAVE HER! Eva lived! We are still a family of four and Phoenix loves us and Eva experiences joy and I want to do things and have fun and soak up every minute of this life while we still have her here... before the next shoe drops, before the next admission, before the next illness... before we loose her. So if you can imagine, it's really hard to be like:

"I'm stressed - sad! - worried - grieving - mad!... AhhhhHH!.... does Eva have a cold? An infection? Is she in pain?! 
.... Anyone want to take a trip to the zoo?"

The tension is real. Maybe you've been there before. Maybe you're there now. I see you, and you are not alone. 

4. Life still goes on, good or bad.
Phoenix fell and fractured his elbow (normal kid stuff, but still!), my mom (who is blind) was recently diagnosed with blood cancer, and some very dear friends have gone through some very devastating things in this past month. "They're dropping like flies!" is something I've said more this month than "Amen." Whoever said that misery loves company was very wrong. Misery wants their loved ones to not be breaking, too. Misery wants less misery. Misery wants FUN! And pretty things! And SOUP! HOT SOUP! (Or maybe that's just me). And of course all the other "regular life" stuff... (Happy Maycember, by the way, to all the moms out there who observe).

So that's where I'm at. Some days, I try to remember who I am. Some days, I spend every small moment I have to myself trying to reconcile what I've lost.

Sometimes it's between dusty treasures in quiet antique malls. At times, I'll find I'm almost feverishly looking for something that I will stop and say to myself "what are you looking for?" 

And the truth is, I'm looking for her, that little carefree girl. Some time capsule back to Eva's wild love and magnetic levity. Her memory lingers like a ghost at my favorite antiques place and I think part of me feels like she'll come bounding around the corner in a silly hat again, and embrace me, and we can just forget all of this and move on to the wild and audacious life of physical and mental freedom like she deserved.

(ceramic cat, for all those wondering).

I look for myself at my favorite Yin class. Who was I? Who am I? What's this body I'm in? Is this the body that almost died from septic shock? The body that betrayed me? Is this the body that ran a marathon and had two babies and is also a miracle? Is it all of those things? How can I make peace with it? I've been working hard to not feel inconvenienced by having a body, but grateful. It's a journey.

And I try to find Jesus from my hot tub. Looking across the clearing at the row of trees, I ask Him where the hell He is. I tell Him he's running out of time. We're going down in slow, steady flames over here... and He's up. Like, literally.

And in that row of trees is where I found Him, I think. And that's what I'd love to tell you about tomorrow...

 Read Part Two

24 Jun 2020

Eva's Accident

blog post by Lindsay Sherbondy

eva at the lake

above :: eva love, summer 2019

It's been exactly ten months and two days since Eva's accident, (you can read my initial instagram post about it here), and I'm still feeling not at all ready to write a blog post about it. However, you guys continue to show up for me –– for US –– and "What happened to Eva?" is one of the most common questions I get, so here I am, showing up for you

August 22nd, 2019, was a gorgeous summer day. Eva Love (seven and a half at the time) woke up excited to play with our neighbors, and was basically out of the house before I even finished my morning coffee. I was in and out of the house all day working, mostly purchasing props for our upcoming Christmas photoshoot.

I love those types of work days, and I loved knowing that Eva was running barefoot around the neighborhood, living her best life. 

I popped home in between errands and was bringing some things in to my garage studio, and saw Eva running our of the house. She saw me and said cheerfully "oh! I didn't know you were here!" She promptly told me that "Buddy (Phoenix) was sleeping on the couch so I just kissed him and he's fine" (like I was wondering) and then scampered off to hop back on the golf cart with her friends that were waiting in the driveway. And I couldn't take my eyes off of her. There was something about her that day – she looked like a real-life pixie. Wild strawberry blonde hair in a crazy top knot, a yellow tank top dress with confetti tulle on the bottom, biggest smile ever, and her bangs were back so I could see her entire, beautiful, freckled face. Her bare feet were dirty and the rest of her peaches and cream skin was glowing. When Eva hopped on the back of the golf cart, our dog, Lucy, started barking at Eva like crazy. It was so odd. I couldn't get Lucy to quiet, so Eva actually hopped back off the golf cart and knelt down to comfort Lucy. I remember thinking it was all so weird and poignant, that I actually took a picture of Eva comforting Lucy, and also of Eva on the golf cart as they drove away.

Her little foot was hanging off the side, a little too close to the wheel for my comfort, and I called after her "Baby, watch your foot! I love you! Have fun!," fought off some Overprotective Mom feels, and went back to work. 

eva and lucy

Eva was supposed to go to swim lessons that night, but she was having so much fun with her friends that we decided she could just keep playing. (When Eva does something she doesn't want to do, it's not helpful anyway). I met D and Phoenix at swim lessons, and about half way in I got the call. I could hear right away that something was very, very wrong. I'd answered the call on my watch since I was in and out of the pool with Phoenix, and the call dropped and I told Dugan, "You have to call back. I can't do it." Dugan called back, and immediately left me and Phoenix at the pool, not saying a word, still on the phone. 

I stayed through the rest of swim lessons, trying not to vomit. D didn't answer his phone –– no one did –– until I finally got ahold of my best friend Ashely and when I asked her if everything was okay, and she was trying her best not to sob, that's when the terror really set in. And this is where the story gets a little fuzzy for me, like I was living in a slow motion scene in an indy movie, and everything was covered in a filter...

Eva had fallen off the golf cart and was unconscious and unresponsive.

She just "tipped off," as the story goes, and I have zero reason not to totally believe that. We get asked a lot if she could have had a seizure or something that would have prompted the fall, and to our knowledge, no. And there's no way to tell. I can't understand at all why there was barely a scrape on the rest of her body (she had a tiny scrape on her shoulder and a swollen ankle), and why didn't she try to brace her fall? The golf cart was being driven by a very responsible other adult, they were driving to the park in our neighborhood, and going very slow. All of a sudden, Eva wasn't on it anymore, was lying in the street, and they thought Eva was joking (in her true-to-self ,dramatic way).

It was an extremely odd, very fluky accident.

I feel like I can't tell all of the rest of the story here in order to give privacy to the people involved that aren't us, but I will tell you that through proximity and communication, some of our best friends and Dugan all ended up at the house where Eva was taken to until the paramedics arrived. Eva was prayed over and her life was pleaded for from the very moment she was laid in the entryway of her real-life guardian angel's house, and honestly (by the absence of life in her fully dilated pupils), if they allowed themselves, they didn't think she'd make it. It took seven minutes for the paramedics to arrive, which is a miracle, and off they went. I missed all of that, since I was just getting back home with Phoenix, and then Ashley drove me to the hospital. The longest drive of our lives.

first visitor badge

I really can't go into the detail of getting to the hospital, because it's still so awful and tender. But Eva went into surgery immediately and we waited for an eternity for her neurosurgeon to meet us in the room of darkness (as I like to call it). Our closest friends – our family – was in the room with us, as we were told that Eva had a life-threatening Traumatic Brain Injury (TBI), and it was "very, very bad." To this point, we had been trying to convince ourselves that it was probably just a bad concussion, so this is the moment I broke, and still have yet to be repaired. Eva had hit the front right side of her head, and the impact and swelling was very severe. They removed a large portion of her skull so that her brain had room to swell, and the next 72 hours were critical. Shock, anger, disbelief, desperation... all the things you think you would think in that moment, are the things we thought. It was hell on earth. 

Eva's official injury is a severe ischemic brain injury, secondary to herniation.

We have since learned that Eva had a zero percent survival rate. Over the next several weeks, we were told that Eva would probably never breathe on her own, wouldn't be able to see, would probably never know who we were, would only ever be able to move her right arm (if anything) and might never wake up. We were asked twice (at huge conference tables with 20+ doctors) if we wanted to discontinue support of Eva, but D and I knew that as long as we saw brain activity –– no matter how irregular –– that we had to give her a chance. They said that they thought that Eva was actively hemorrhaging and that it would compress into her brain stem, leaving her in an unresponsive state (you may have heard "vegetative," but that's old school and rude), which is actual, clinical death. HOWEVER, aside from all likelihood, that didn't happen. I'm not exactly sure when she emerged from a coma... sometimes D and I still think she has one foot in heaven some days, not fully here with us at times. I'll be totally honest friends, sometimes I long for Heaven for her. Sometimes, in my worst moments, I wonder why God had her so close, and didn't just keep her there with Him. Where she was safe, and could dance and sing and be pain-free forever. That part I think angers me more than the fact that the accident even happened at all. It felt like He swooped in and saved her... kind of.

I probably won't ever understand it, this side of heaven. But what I DO know is, Eva didn't die.

She wasn't unresponsive like they predicted she would be, and she can do lots of things already that they said she never would. (i.e. breathe, swallow, move all of her limbs, she knows who we are, she can see and hear and she has shown us that she can experience joy –– check out this instagram post where there is a video of her laugh!).  

What's Eva's life like now? Uphill, but we remain hopeful, I'd say. Again, she's surpassed everything they said she would do. Is that enough? No. But we are believing in more miracles. There have been lots of medically complicated things since her accident.... Eva has had seven surgeries including her initial surgery (decompressive craniectomy), wound reconstruction, Baclofen pump placement, gastric tube placement (how she eats), cerebral shunt placement, and her most recent shunt revision, which is why we're in the hospital today. She's also had what seems like a million medication revisions, and her brain continues to go through weird cycles of over-activity and under-activity. She hasn't had any detected seizures (although they have tested a lot), but continues to struggle mostly with refluxdystoniaspacity, and hydrocephalus.

eva at shirley ryan

We've spent over 100 days in hospitals/rehab facility this year, and to say we're all exhausted is an understatement. However, we have seen glimmers of hope. If you put all of her best moments together and make days out of them, she would be doing amazing. But as everyone who is medically complex or has medically complex children knows, the good seems to come in tiny bright spots instead of a steady stream of fireworks, and so you have to keep your magnifying glass out and succumb to the fact that the annoying adage, "one step forward, two steps back" might be a thing for a reason.

She still spends way more time crying than we'd like, but when she has moments of connectivity, I look in her eyes and can't help but think "I'm so glad we still get you."

I think one of the hardest things for me personally is knowing when to push and advocate and research and DO, and when knowing when to wait and trust. And finding the balance. Will God inevitably heal her in His way, in His time, or am I responsible for spending my waking moments pushing and discovering and fighting. Will hyperbaric oxygen therapy (for example) be the answer, or is my job to simply love her, and let her brain rest and heal? You might be thinking "both, balance." And to that I say, easier said than done. 

eva in the hot tub

So, that's where we're at. Of course, there's a million things I could say about the between then and now, but either way, we are here.

We are here and we have her, and we believe that God has a plan and a purpose for her life.

eva happy

And again, I know I'm being redundant now, but I can't shake the feeling that while Eva was in a coma, God HAD HER. And He didn't keep her there, with Him. And so in that light, I believe that she's here on earth for a reason. And on our best days, that is the promise we cling to. She defied the odds. She has always been a magical, non-conforming creature, from day one. She doesn't really follow the norm, does it her way, and lives creatively and loudly and lovingly. The sticky, gushy, squeeze-you-to-death kind of love that leaves glitter everywhere. This is who God made her to be, and we know and trust she will be able to live life this way again. Even now – especially now – she's magical.

eva and bray

above :: eva love + her best friend Bray, summer 2020

Thank you, friends, for your continued love, support, and prayers. We love you and couldn't walk this road without you.

xo, Lindsay

p.s. you can read more posts on her Caringbridge and on my husband's instagram. Do you have questions I didn't answer? Drop them below, and I'll try to follow up when I can.