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