There are saints among us–good people who do a good work because it’s good to do. Goodness can be and is the greatest reward, but it’s not often the motivator it should be. Not so with Sweet Nectar Society, an organization that, in its own words, “brings together a network of talented photographers throughout Central California for one important mission—to capture the hope, courage, and strength of children undergoing treatment for serious illnesses, disabilities and injuries, and provide their families with lasting memories.”
Basically, they take gorgeous, realer than real pictures of children with special needs and gift them to their families by way of slideshow, coffee table book and a digital copy of every photo. The photographers are of such skill that the package altogether would cost in the many hundreds of dollars. If they asked anyone besides donors to pay for it.
My middle daughter, Cami (who I wrote about in a pair of blogs last week), was recently blessed with a Sweet Nectar session. My wife Erin, who, at this point, has waged so many battles on Cami’s behalf that I’ve lost track, participated in the shoot as well. Now, not only do we have the sweetest, truest photographs of Cami, I’ve ever seen, but we have her unique relationship with her mother captured on film. It’s a pretty remarkable set of pictures.
You can see the photos for yourself at this blog. The brief paragraph the photographer wrote about Cami and her experience working reminded me of just how difficult some of the past seven years have been. I had completely forgotten that early on a geneticist told us Cami likely wouldn’t live past three. She was a bonehead.
I’m grateful to have the perspective of 2012. We still don’t know what in the world will happen with Cami or how long she’ll live, but we do a lot better with enjoying what we have with her now. Just what that is and what it feels like to be in Cami’s presence day in and day out can be difficult, I think, for others to see and appreciate. Thankfully, we now have these photos.
As a matter of sanity, we’ve accepted that perhaps Cami will not be long for this world. If no one knows what’s wrong with her, then what’s wrong with her could be far worse (or far better) than any of us know. The joke has always been that Cami is just aging slowly—that she’s like some throwback to early Biblical times and this is just what a super long life looks like at the beginning of it. But, if thats’ not the casse, then where does that leave her? How long can a person whose body develops so little and has her attendant complications expect to live? No one knows.
Erin jumped into the ambulance with Cami and I headed back into the house. Elora was on the phone, but handed it over quickly. Erin’s friend Kristie had been driving home and followed the ambulance down the street. She called as soon as she could after seeing it stop at our house and graciously offered her services. I thanked her and asked her to come by and grab Elora.
Elora, bored with listening to one side of a conversation she cared little about in the first place, was now on the computer playing a game. After getting off the phone with Kristie, I scolded her.
“Elora! Now…now is not the time to be playing on the computer!”
“What? Mommy said I should!”
“S-she did?” Of course she did. That’s because your mother is a genius.
By the time Kristie had gotten to our house I had called both grandmas. My mom volunteered to have Elora stay with her, and Kristie was tasked with taking her over there. I knelt down beside Elora before she left to reassure her that Cami would be okay (as if I knew any such thing) and that she hadn’t done anything wrong by laughing at her. There was no way she could understand what was happening.
The first time this happened Elora was already in Los Angeles ahead of us and spent much of that night sobbing. Now, seeing it firsthand, it was different for her. We said everything was going to be fine and she believed us. I was grateful for that.
By the time I got to the hospital, the ambulance had already arrived, but only just. My Mother-in-Law, Lynn, was there too. We embraced and waited for our chance to go back into the ER to be with Cami and Erin. When we finally got to them, Erin, her face red with the trauma of the past hour, was laying on her back on the bed and Cami was lying face down on top of her.
Cami still moaned, softly. The seizure had taken her normal behavior and thrown it back about three years. There was a time when she was just a lump. A cute lump, but still a lump that didn’t do much other than sleep and stare. The pain was forcing her back into that. That’s what I told myself. It was just the pain.
After the doctor and nurses got the I.V. in her (and after a lot of screaming, of course) the lump insisted on sitting up and rising back to life. I pulled out my iPod, treating her to a silent home movie I had edited together in which she is the star. She also got to play as much Awesome Ball as she wanted. With strength that had been beyond her reach just an hour earlier, she shook the virtual ball as hard as she could, laughing as she sent it careening around the virtual room. For some reason, bouncing balls are hilarious to Cami, real or unreal.
“Hi,” she turned to me and said.
“Hi,” I said back.
* * *
Cami has had other seizures since, but the last one was a year ago. Near as anyone can tell, they’re not damaging her in any permanent way.
This is from a few years ago, but this is its first appearance on this blog.
She wouldn’t eat her french fries. I should’ve known something was up when the fries just sat there on her plate and she demanded rice. Who the crud prefers rice over fries? Not Cami.
“She didn’t get much of a nap in today,” My wife said.
“That’s weird,” I said.
After we left the restaurant, I set Cami down on the ground as soon as we entered the house and she dashed (in her own way) for her bedroom, following her big sister. Erin and I stayed in the living room so she could perform her wifely duty and point out my faux pas at dinner (lesson learned: don’t play iPod games at the table).
That’s wrong. We debated my table manners in the car on the way home. The conversation we had in the living room I can barely recall at all because everything that happened after leaving the restaurant is obscured by the memory of our oldest daughter Elora cackling in the hallway.
“That’s funny! Hahahaha! That’s funny, Cami!”
What was so funny? Elora just kept laughing. Erin’s curiosity moved more quickly than mine and she went to see what was going on. I started taking keys and change out of my pockets for my big, post dinner lay down.
“Brock! CALL 911!”
“What? Why?” Dang it, was my first thought. I really wanted to play Guitar Hero. Instead of grabbing the phone, I rushed over to see what was going on first. The Digital Guitar Gods demanded I find out if there was a chance Erin was overreacting.
Erin was crouched low over Cami, panicking. Cami had fallen, having lost control of her body. I knew this sight well. A year ago we were on our way to Los Angeles when by chance I looked over at Cami in the backseat, only to see her staring directly into the sun.
“Cami. Cami! Don’t look into the sun, sweetheart. Don’t do that. Cami! …Cami?”
Then I noticed that she wasn’t looking into the sun at all. She couldn’t, not with her eyes rolled into the back of her head. She was shaking, too. Every limb was flopping about like so many out-of-water fish. Now, in the hallway, she was doing it again.
For the first time in my life, I called 911. Cami has special needs. She’s too small for her age and can’t say but a few words. The best neurologists in San Francisco don’t know what’s wrong with her, but they told us if she ever had another seizure then we should call for an ambulance immediately. Sure, the first one was a febrile seizure (a common attack of the brain brought on by a sudden fever than happens to lots of young kids), but with Cami it could always be more than that. A seizure could be the sign of something horrible. A deterioration of her already puzzling physical and mental health.
“911. What is your emergency?”
“My daughter–she’s having a seizure! She’s very small and has special needs and she needs a hospital right away.”
The 911 operator confirmed my address and dispatched an ambulance immediatley. I gave real-time updates on the phone as Cami stopped shaking after about a minute and then lay very, very still. Erin stayed right with her. Knowing what was coming, she ordered Elora into her room to change into pajamas. She didn’t know where Elora would end up in all this, but it sure wasn’t going to be the hospital. Plus, it kept our laughing daughter busy.
The operator on the phone assured me that Cami was progressing out of her seizure just fine. I hung up the phone and went into the hallway. Erin scrambled to get ready to leave, putting her shoes back on. I took over with Cami, scooping her up into my arms and sitting with her on the floor of the hallway while she moaned and cried softly. I hadn’t cradled her with such trepidation since the day she was born. The look of confusion on her face broke my heart.
The dog and the cat were agitated. The sirens were getting close. That’s when it hit me.
“Erin! The dog! They’re here and the dog is out!” Elora, age 6 and freshly dressed in her PJ’s, walked by and stepped over us to make her way to the drama-free living room. “Elora, put Plato in his kennel!”
“How am I supposed to do that? I don’t know how! Sheesh.”
“What?” Erin shouted back from the bedroom.
“They’re HERE. The DOG!” Plato is a good dog, but he likes to greet all new visitors with a bark and a climb. That wasn’t going to happen. Erin got him into the kennel not five seconds before the men in their we’re-here-to-help-you suits knocked on the door.
Elora answered. “Hi!”
“Hi, sweetie. Can you tell us what’s going on here?”
“My sister fell down. She had a seizure in the hallway.”
They came in quickly, kneeling with speed and care in front of us. I thought of E.T. and how he was lying next to Elliott as the scary men in hazmat suits rushed in to take him away. Cami had just started saying her second word that week. “Da” or “Dada.” Now this? How fair was that? Can your brain be damaged by a seizure? Even frickin’ E.T. has a bigger vocabulary than her. There would be no magnificently huge tubes leading us from the door of the house to the ambulance.
Several questions were asked of me about Cami’s current state, all of which I answered on autopilot. I made sure to appear calm, but inwardly there was one thought that overtook all others: Please don’t let this be the one that takes her from us.