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 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.
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 reflux, dystonia, spacity, and hydrocephalus.
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.
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.
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.
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.
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.