at a loss

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This post is dedicated to the memory of Tayley the frog. Sweet dreams, little guy.

***

Spacial orientation defines our natural ability to maintain our body orientation and/ or posture in relation to the surrounding environment (physical space) at rest and during motion. Genetically speaking, humans are designed to maintain spacial orientation on the ground.

The three-dimensional environment of flight is unfamiliar to the human body, creating sensory conflicts and illusions that make spacial orientation difficult, and sometimes impossible to achieve.

~ Federal Aviation Administration

Something wasn’t quite right with one of Kendall’s two frogs on Tuesday night. One was swimming around – or at least just kinda hanging around – in its typically froggy way, but the other one seemed to be spending most of its time lying listlessly under the rock in their little tank.

And so, it wasn’t a great surprise when I peeked in the tank the next night and found him floating on the surface of the water.

I held my breath for a moment, trying to gather my thoughts and decide how best to tell Kendall the news. There really wasn’t much to decide.

“Kendall, honey – I need to tell you something.”

She was in motion – moving, always, always moving, moving.

“Sweetheart, I need to tell you something,” I said again. She stopped for a moment and looked my way. “Honey, one of your frogs died.”

“It did?”

“Yes, baby. Do you want to come see him?”

“Oh yeah.”

We walked over to the tank and I pointed to the motionless frog.

Darby came up behind Kenz and asked, “Which one is that, Kendall?”

“That’s Tayley. Tayley died. He’s dead.”

“Yes, baby, he is.”

She went back to orbiting the room – moving, moving, ever moving. Matt and I asked if she’d prefer to honor him with a traditional flush or to bury him, as we had done with Darby’s fish, Spaulding just a couple of weeks before.

“We would flush him,” she said without hesitation.

I was worried. What if we flushed him and then, just a moment later she said, ‘Now we would bury him’? That’s the way things tend to work around these parts. I asked again. And again. She was sure. I wasn’t.

Matt scooped him out of the tank and brought him into the bathroom in a small cup. Kendall and I stood by as he gently poured him into the toilet.

Kendall began to laugh. Loudly. Very loudly. Somewhat manically. “He’s in the potty!” she yelled, catching her breath as she laughed hysterically.

Matt and I remained what I guess we thought was appropriately somber. He told Kendall he was going to flush the toilet and we said good-bye to Tayley as he made his way through the plumbing and into the great beyond.

Kendall ran back into her room, still laughing heartily. “Tayley went in the potty! Tayley died. He’s dead. He went in the potty! He got flushed in the potty!”

I suddenly panicked. She was laughing her little ass off. This was funny. Or something. I looked at her other frog. What if she decided to flush it, or, heaven forbid, Darby’s new fish? I got down on my knees in front of her.

“Kendall, we don’t ever flush animals that are alive, OK? Only Mama or Daddy can flush a fish or a frog OK?” I regretted our decision not to bury him.

She sensed something in my tone. She must have heard my anxiety. She balled her little fingers into fists, rounded out her arms and flexed like a tiny, not green Incredible Hulk and began to shake.

“Honey, you didn’t do anything wrong, OK? I just want you to know that ONLY Mama and Daddy can flush anyone. Who can flush anyone, Kenz?”

“Mama or Daddy.”

We went through this bizarre conversation a couple more times. It’s the only way to ensure understanding.

As soon as I stopped talking, she bolted away and spun herself around. Suddenly she found herself back where she started – we were face to face. She shook again, her little arms tensed all the way down to those tiny, angry fists. Then she took a step back from me and folded her arms in a pose that would have been a great imitation of Barbara Eden in I Dream of Jeannie had it not been so frighteningly intense.

She came toward me and butted me lightly with her forearms, still held out in front of and away from her little body. “Fight! Fight! Fight!” she yelled. I was taken aback. I had absolutely no idea how to react. “We’re fighting!” she continued as she came toward me again. “Fight! Fight! Fight!”

It couldn’t have been more obvious that she wasn’t trying to hurt me. She was stopping just shy of me or at most, touching me lightly. But her stance was painfully, frighteningly aggressive. Her entire body was ready for action. Even her jaw was set and tight. She was expressing SOMETHING.

“Fighting is MEAN.” she said loudly. “Do we fight?”

I snapped out of my daze long enough to answer her, “No, baby, we don’t fight.We love each other.”

I was lost. I had no idea where I was in the room. I’d lost my compass. I was watching this little person who I love more than life trying to tell me something, but for the life of me I didn’t know what. Worse, I didn’t recognize her. I don’t know how else to explain it. I searched her eyes, then her entire face for my baby – for the little girl who I know – who I try so hard to really, truly know. I didn’t see her. And she certainly didn’t appear to see me. She looked at me so intently, but she – my Kendall – wasn’t there.

She ran out of the room and, at Matt’s prompting, ultimately made her way into the shower with her sister. I fought to steady myself. The room was tilted like a fun house ride. I’ve always hated those rides.

Matt walked in and I tried to explain what had happened. I couldn’t. After trying to relate the story I said, “I feel like I’ve lost my spatial orientation.” He tilted his head like a sweet and terribly confused Golden Retriever and added “Huh?”

The rest of the evening unfolded just like any other. There was not so much as a trace of earlier events. Kendall was playful and happy.

At bedtime, I curled myself around her back as I always do. We cuddled and I pulled her as close to me as I could.

“Kendall,” I began tentatively, “when Tayley died, how did it make you feel?”

“He died. Tayley is dead. We flushed him.”

“Yes, honey, but when he died, how did you FEEL?”

I was on unfamiliar ground. I was desperate to give her a forum to talk about her feelings. But she doesn’t have the language to express more than two of them – or three if you count the occasional ‘frustrated’. I have no idea how much she understands what ‘feelings’ even are. But she had FELT something. I know better than to make the erroneous assumption that because we can’t see her emotions, she’s not feeling them, and this time their was no way in hell that she hadn’t felt something pretty damn intense.. So what then? What had it been?  How do I give her the tools to talk about how she feels without making assumptions about how I think she feels? Just because losing a pet would make ME sad, can I assume it should or does make her sad too? Gaaaaah!

“Because he died,” she said.

“Yes, honey, HOW did you feel because he died?”

I gently asked three more times. I was determined not to lead her into an answer. If I put words into her mouth they’d be meaningless. The third time she answered differently.

“I feeled sad.”

Progress. HUGE progress.

“You know, Kendall,” I said to her back, “when I feel sad I like to have a hug. What do you like to do when you feel sad?”

“I like to say about rainbows and then I am happy.” She began to sing. “Happy Happy Happy! Happy Happy Happy” to the tune of “Conga! Conga! Conga!”

So um yeah. There we were, in the dark, after losing her first pet, singing a happy Conga. She stopped singing. “Tayley is dead. Like Spaulding. But we CAN’T talk about it.”

The wheels started spinning in my head – why would she think we can’t talk about it? The pieces came together pretty quickly.

When Spaulding died, Kendall talked about it incessantly. Each and every time that she walked by his empty tank she would say, for all the world to hear, “Spaulding’s not here anymore. Spaulding is gone. He died.”

As you might imagine, this practice was hell on her sister. Once Darby’s new fish, Splooshy took up residence in Spaulding’s old tank, Kendall would say, “There’s Splooshy. No more Spaulding. Spaulding’s all gone.” Darby did not need to be CONSTANTLY reminded that Spaulding was gone. We explained to Kendall that we couldn’t talk about him all the time because it made her sister sad. It was perfectly logical that she would think this situation was exactly the same.

I scrambled to explain that we could talk about Tayley all she wanted, anytime.

I finally kissed her good night, counted down and headed out of her room. I went down to the office for a while. I was waiting. Waiting for the storm – the meltdown – the bottled hurricaine of emotion that I thought was sure to come. I remembered this night and tried to ready myself for what I thought was ahead.

I finally went to bed. Kendall slept through the night without so much as a peep.

I tossed and turned but finally fell into a restless, anxious sleep. How do we do this? How do we guide kids who don’t have the facility to verbally express emotion toward an outlet to process those emotions? How do we teach them to use words when we don’t know which words are appropriate? How do we assign meanings to feelings without knowing which feelings they are experiencing? How do we know which reactions are pretty well universal to life events like these and which are simply ours and don’t apply to a mind that works differently?

When Darby lost her fish she cried. A lot. She poured out her soul with each tear. She told me that she was sad. She told me that her heart hurt. I knew what to do. I knew how to soothe her pain. I knew there was pain.

With Kendall, I tried. I really, really tried. And still, I can’t answer a single one of those questions.

russ, meet everyone. everyone, meet russ.

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One of my favorite aspects of blogging is the dialogue that ensues long after a post is written. Some of it happens right here, in the comments. Some of it spins off between readers and leaves me far behind. And some of it – much of it, in fact – happens via delightful e-mail exchanges, rich with thought provoking (and often post-provoking) conversation.

One such conversation started on Tuesday afternoon. I got an e-mail from my friend, Russ. Hmm, wait – is ‘friend’ appropriate, I wonder? ‘This guy’ Russ certainly doesn’t work. It sounds pretty dismissive. ‘Some dude who I’ve had a few really nice e-mail dialogues with’ is really clunky. I mean, try to say it three times fast. Or even one time fast. Oy.

Where was I? Oh, Russ.

Screw it.

Everyone, meet Russ. Russ, meet everyone.

I’m going to just let him take it from here, mmmkay? Take it away Russ ..

I am a long-time lurker here and a sometimes poster to the comments. I have also on occasion written and Twittered about my own family’s experience with the autism spectrum, but I do not have my own blog.

I have two beautiful children, Trevor, 8, and Lindsay, 7, and an incredible wife, Susan. Our son was diagnosed with PDD/NOS just after his second birthday, and little in our New Jersey home has been the same since.

I’ve never met or even spoken to Jess or any of the regular posters here, but I feel like I know so many of you.

I discovered Jess’s blog when she had an “In Their Own Words” piece published on the Autism Speaks site. I was amazed by her writing, and by the community that has developed here. I was also taken by how closely so many of the stories resonated. No matter how unique our individual children, there is a common thread to the autism narrative, as we all feel our way through this puzzling disorder and do our best to advocate for, educate, and protect our kids.

Jess’s post the other day about forgetting money for Kendall’s hot dog at the pool hit a little too close to home. I decided to share with her my own “best laid plans” moment from the weekend just past. That e-mail became an exchange and an invitation to guest-post the story here. I consider it an honor, and hope I haven’t lowered by too far the incredible writing standards here .

Consider this a “diary of a dad”…

Did you ever do something completely outrageous, if only just to satisfy your special needs child? It’s like a moment when you surrender to autism, and you can’t decide if that is good thing, a bad thing, or just a fact-of-life-on the spectrum autism thing.

That was me this past weekend.

I was trying to put a positive finish on an up-and-down weekend. I had cringed as Trevor struggled to follow instructions at the hockey clinic he attends. I beamed when he came off ice smiling, proudly telling me how sweaty he was from the hard work. I took it like a kick in the gut when I asked Trevor what his friend from special needs camp might like to do on a play date and the answer began with “well I like garages and he likes traffic lights…”

Trevor does like garages. He classifies all houses by their garage doors, and he describes the doors by naming their color/window scheme, starting from the bottom up. There’s “brown-brown-brown-brown” and “white-white-white-glass” and “white-white-glass-white” (because the windows aren’t always in the top row. Who knew?)

There’s even “ficky glass” — his word for windows that aren’t square but rather are some fancy shape. Oh, and “T glass,” or windows with four panes instead of one.

Apparently our garage door — “white-white-white-white” — is the lowest of the garage low-rent district.

A week ago, when we were talking about garage doors (in an attempt to distract Trevor from his anxiety over the brutal traffic coming back from the Jersey shore), I happened to mention that ours was actually “white-white-GLASS-white,” which has much more status in the garage world. The windows had been painted over by some previous owner.

Ever since that moment he’d been asking me if we could scrape the paint and transform our garage. It was not a project I was enthusiastic about, for a number of reasons. Nevertheless, on Sunday I finally ran out of excuses.

The clincher came when Trevor agreed to go with me to the store to get the supplies. He NEVER agrees to go to the store, even if it’s to get him something.

I relented. I was ON BOARD. So what if it was 90 degrees and 1000% humidity and I would be scraping paint inside the unventilated garage with the door closed? (Did I mention the windows were painted on BOTH SIDES?) Damn it if I wasn’t going to win Dad of the Year, or die (likely from paint-chip inhalation) trying.

A few minutes into the job I realized how futile it was. The paint was stubbornly clinging to the windows. I had to keep shooing Trevor away from helping for fear he’d inhale some of what I was trying to block with my 99 cent painter’s mask.

Finally, I got a single pane cleared — on the outside. Dripping in sweat and covered in paint flakes, I decided that I would do the inside of that one window and stop. Then I’d let Trevor come up with a new name for the resulting garage scheme.

I moved inside the garage to do the other side. I shut the garage door and started scraping away. I got it about half done when I pushed a little too hard and the glass shattered. My heart sunk. My anger spiked.

I was angry to be soaked in sweat, inhaling God knows what, scraping stupid paint off a stupid garage door window because if my son was “normal” I wouldn’t be there. I was angrier still that I wouldn’t be able to deliver for him. I threw down my scraper and threw open the garage door — conveniently forgetting that in doing so I was raising the glass shards directly over my head. The glass came crashing down on me. I felt my scalp. My hand was covered in sweat, and more than a little blood. Luckily it was just a nick.

I went inside. For about the tenth time since I had started, Trevor asked if I was all done, and his look just broke my heart. It was as if an affirmative answer would have made everything all right, if only for a moment. I think as special needs parents, we always are trying to deliver those moments. Every once in a while we can reorder the world to suit our kids.*

I told Trevor the bad news. I feared a meltdown. He took it well, but was disappointed. I went back outside to tape some cardboard over the shattered window, and then finally allowed him to see my work.

He looked it over and pronounced the result OK. We now have a “white-white-SHADY GLASS-white” garage. In the words of the Jeffersons, we’re “movin’ on up.”

I told this story to several co-workers Monday. They got it but they don’t GET it. And that’s OK too. Maybe the next time they see a child with an “odd” interest or one melting down in public, they’ll think twice about their reaction. Maybe they’ll start noticing exactly how many different types of garage doors there are, too.

The silver linings are out there, they’re just sometimes, really, really, REALLY hard to see.

* ed note .. The italics are mine, because I loved the simple, torturous beauty of the line, ‘Every once in a while we can reorder the world to suit our kids’. It made my heart hurt. I GET it. Down to my toes, I get it. If you do too, please don’t be shy. Leave a comment and let Russ know.

Because, ultimately isn’t this what the dialogue is about – finding and sharing with those who GET it?

Thanks so much for telling your story, Russ.

p.s. I think this makes us friends now. I’m just sayin’.

lollipop lollipop

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I’ve been working on a BIG post. Or at the very least a HEAVY one. One of those posts that starts with “… and it felt like the wind had been knocked out of me when …” and ends up somewhere around “so how do we ever know we’re really doing right by our kids?”

I keep coming back to it, but attempting to corral my thoughts into a coherent post has been like trying to herd wet cats. I’ve tried to wrap my arms around it three times now, but each time the cursor taunts me and a renewed sense of futility sets in.

Since I’m not particularly fond of cats in the first place, and howling, screeching, clawing, generally pissy kinda ones scare the crap out of me, I’ve decided to leave off for a while. Hopefully they will mellow with time, lay around lazily in the sun for a bit and finally let me tease them onto the page with a piece of string when they’ve got their guard down.

If not, I’ve at least answered one of life’s nagging questions, “Yes, Virginia, you CAN take a metaphor way too far.”

In the meantime, I offer a little slice of life – sticky and sweet and inimitably Kendall.

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“Ooh, Kenz, that looks like a good lollipop!”

“Mmm hmm.”

“Is it yummy, baby?”

“Mmm hmm. It’s so …”

She stops – holds the lollipop up to her face with a sticky hand and thoughtfully inspects it for a moment before continuing.

” licky.”

this

photo by daddy

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Darby called from my mom’s house on Sunday morning. She was having a ball – all the nerves of the night before long since eclipsed by the anticipation of the day ahead.

I was so proud of my girl. She was proud of herself. She had conquered her fear and made it through her first sleep over. It was in her voice. She sounded older, more poised, more mature.

She wanted to speak to each of us – to touch each base in turn.

After listening to a delightful run-down of the schedule for the day, I switched the phone to speaker and handed it off to Kendall.

“Hi, Kendall!”

“Hi, Darby.”

“How are you, Kenz?”

“I’mfinethankyouhowareyou?”

“I’m fine, Kenz – Great job asking me! Kendall, what are you doing?”

Kendal tapped her hands on her thighs.

“I’m doing this.”

“Oh. That’s nice. What’s ‘this’, Kenz?”

“This.” She tapped her hands on her thighs again – a little more slowly, as if to show the detail in the action.

“Kendall, can you use your words to tell me what you’re doing? Can you DESCRIBE it?”

“Sure, Darby. I’m doing this.” She drew out the word this time .. thiiiiis.

“Well, that sounds great, Kenz. Have fun doing – um, ‘that’.”

“Ok, Darby.”

Quiet. Kendall was getting fidgy. The conversation has lasted far longer than most.

“Kendall, are you all done talking?”

“Oh yeah.”

“O.K. I love you, Kendall.”

“I love you, Darby.”

I took the phone back before sending it over to Daddy.

I told her that I loved her more than salty french fries on the beach.  What? Not the ultimate yard stick of love in your house? Whatever.

I did NOT tell her that I had wandered into her empty room the night before. I did NOT tell her how I’d straightened her quilt (again) or moved her stuffies into their preferred places. I did NOT tell her how I’d curled onto her pillow for just a second (or um, two) and cuddled her favorite stuffed bunny – the one who sleeps at her back every night – cherishing the smell of her on its ‘fur’. I did NOT tell her that I felt like my left arm was missing and that I couldn’t wait for her to come home.

Instead, I told her how proud I was of her. I told her that I couldn’t wait to see her the following day. I told her she was going to have a great time with her grandparents, which is exactly what she did.

Yes, my little girl is growing up. And I’m so proud I could bust.

if woody had gone straight to the police …

 

 

It was all my fault.

Simple as that – the whole thing could have been easily – really easily – avoided.

It should have been a perfect afternoon. The weather was gorgeous (finally!) and Matt and Darby were on their way down to Connecticut to drop Darby off at her grandparents’ house for her first big kid sleep-over weekend. Kendall and I had the rare luxury of going to the pool ALONE. I couldn’t wait.

I packed a bag with the few things we needed to bring along and headed out, thrilled to be spending an ENTIRE day alone with my little bug.

On the way out of the house, I saw the ‘real’ pool bag by the door. There was some useful stuff in there – a bag of goldfish, some pool toys, extra goggles, a can of sunblock with far more in it than the one that I had. I grabbed the few things that I had thrown into the original bag, switched them over and gathered us into the car. I didn’t see the cash on the bottom of the bag that I was leaving behind.

Off we went.

We swam and splashed and jumped and spun. Kendall rode the toddler slide. Twenty seven times. We were happy as clams.

At about 11:45, she stopped splashing and said, “I’m hungry. I will get a hot dog and french fries.”

At the pool, Kendall gets a hot dog and french fries. There are fifteen or so menu options. Kendall gets a hot dog and french fries. It is what she does.

I pointed to my nose, “Mama …”

“Mama, MEEEEEEE I get a hot dog and french fries pleeeeeeeease?” she asked.

I happily agreed. The concession stand is run by the keystone cops, so ordering before the lunch rush is never a bad thing. Dripping wet and shivering despite the sun, we waddled over to our chair and I rifled through the bag to find the cash.

It was nowhere to be found. Kendall was getting antsy. She was cold. She was hungry. And I was panicking.

I emptied the contents of the bag onto the chair and feverishly picked through them. Finally I had to admit to myself that there was not a dime to be found. Actually, that’s not true. There was a dime. And four quarters. And one penny. Yes, I had $1.11 – NOT helpful. I searched around to see if I could find anyone that I knew. I saw no one that I so much as recognized.

All I had was a bag of Goldfish and a stale old bottle of water.

I explained the situation to Kendall as well as I could. I told her why we couldn’t buy a hot dog today. I brought her to a table with the bag of Goldfish and the warm bottle of water. Oh yeah – the lunch of champions. I told her that this would be our snack and we would get a hot dog somewhere else after swimming was all done.

I couldn’t believe how flexible she was being. She seemed to be totally fine with eating the Goldfish and going out for lunch after the pool (to a place where Mama could use a credit card). She seemed to understand.

After about five minutes of Goldfish munching, she said, “We’re waiting for the hot dog and french fries. They are cooking it. I’ll have my hot dog and french fries when it’s done.”

Damn, damn, damn. I thought she had understood.

I tried to explain again. “Mama forgot the money, baby. We need the money to buy the hot dog. We can’t get a hot dog at the pool today.”

It was perfectly clear that she had stopped understanding anything I was trying to say.

A toddler cried in the distance. Kendall shouted out in response. Heads turned, startled by the shrill yell.

A little girl at a nearby table sneezed. I watched Kendall tense. She sneezed again. Kendall lost it.

She had no further interest in the Goldfish. She was shaking.

I wracked my brain. There had to be something I could do.

When my mom was a little girl, she collected $2 bills. I have always had a couple of them – cherished good luck talismans. A few years back, I was at a restaurant in Dallas. Walking back to my table from the ladies room, I found a card folded around five $2 bills. The card said, “Lucky you!” on one side and bore the name of the restaurant on the other side. It made no sense and perfect sense that I should find it. On the spot, a friend tried to ‘buy’ the bills from me. I refused. “These ain’t for spending,” I told him. I’ve carried them in my wallet ever since.

Why hadn’t I thought of them earlier?

I told Kendall that I had an idea. We ran up to the bag and dug in my otherwise empty wallet for the $2 bills. I grabbed three of them and headed to the concession window, now four deep. I ordered the hot dog and fries and handed over my bills. Kendall screamed.

A child nearby was coughing.

By now she had absolutely no defenses. Every single noise was under her skin. Every hiccup in the universe was rocking her little system to its core.

I tried to soothe her, but I was worse than useless. I tried to pick her up, but she squirmed violently out of my arms and screamed through her sobs, “IDON’TWANTYOUTOHOLDME!”. I tried to speak softly to her, but it was far too late for her to hear me. I tried to touch her gently, but she screamed again. “YOUWOULDNOTTOUCHME!” I tried to prompt her to cover her ears, but she simply couldn’t process it anymore. She was miserable. So was I.

I glanced at the crowd of people waiting for their food. They were all looking at her. I wanted to kick the man who stood nearby sneering at her. I wanted to knock over that smug mother in her chair who kept shooting us both the oogly eye. I wanted to disappear into the corner. Melt into the pool.

The keystone cops were too busy bumping into each other to actually serve more than one piece of food at a time. It was now just shy of twenty minutes since we’d ordered one God-damned hot dog and fries. I must have jinxed it when I said, “as quickly as you can, please.”

I thought of our friend with a nonverbal son. A couple of years ago, his son simply wouldn’t sleep. Ever. At his wit’s end and desperate to let his wife and daughter get some sleep, he took him to a bookstore around nine pm. He had a meltdown by the registers. He was simply done. He was on the floor, wailing and banging his head. Our friend was exhausted, spent. From the middle of the line he heard,”Well, that’s what you get for bringing a kid out so late.”

My friend turned to the entire line of people. He had had enough. Like his boy, he was simply done. A big man, there was no missing what he was about to say, especially at the volume that he was going to say it. “My son has autism.” He was spitting his words at them. “THIS,” he said, nodding to his son, out of control on the floor, “is life with autism.”

I thought of him as Kendall shouted and sobbed and heaved. All because she can’t fend off the rest of the world without fuel. All because that tiny little body goes haywire when she’s hungry. All because Mama forgot the money. All because she hadn’t understood the explanation. All because there’s only so much she can handle when she’s hungry AND confused.

Stop looking at her, God damn it. Stop judging her. Stop judging me. You have no idea what you think you’re seeing.

We got through it. A friend eventually came by. We sat with her and her twin girls, who very sweetly shared their food with Kendall. She even bought back my $2 bills. I was grateful. Lucky me indeed.

Kendall was eventually calm.

And I felt like crap.

good calling

But wait there’s more!

~ the late Billy Mays

As though we hadn’t had enough Bloggy Mama Love to last til Kingdom come, there was even more in store for the weekend. On Sunday, we had plans to meet up at the beach with Jeneil, her beautiful daughters, Rhema and Hope and her delightful (and heroic) husband, Brandon.

While searching in vain for parking spots at the very, very, very  (no, seriously – VERY) overcrowded beach, we decided together to pull the rip cord and caravan back to chez Wilson for some good old fashioned sprinkler jumping, popsicle slurping, swinging, slipping and sliding.

As soon as we got to the house, the girls hit the ground running. They took to the play set, each finding a space to call her own. They danced around each other for a while, apparently content to weave in and out of each other’s space.

Rhema discovered the Air Pogo, which is essentially just what it sounds like. It is a long stick with a platform on the bottom that bounces up and down on an elastic cord attached to the top of the swing set. She sat down on the platform and quickly discovered that she could make it spin by pushing off of my legs to gain momentum. I was amazed by her strength, agility and coordination – attributes that were obviously innate, rather than learned as with (both of) my girls.

I was delighted when she reached for my hand and put it on the pogo stick. I wasn’t sure what she wanted me to do, so I asked. “Bounce? Do you want to bounce, Rhema?” I was thrilled when she ‘answered’ by grabbing my other hand and putting it on the stick next to the first. I bounced her up and down, gleefully sing-songing, “Bounce! Bounce! Bounce!”

Eventually she tired of bouncing and pushed off of my leg again into a dizzying spin. She lost her balance and  fell to the ground like a sack of potatoes, but thankfully bounced right back up, unscathed. As she did, she saddled up again, grabbing my hand and putting it back on the stick. “Bounce, Rhema?” I asked again. “Bounce?” She grabbed my other hand. This time I waited. “Bounce? Bounce?’

“Boun” came the soft, but unmistakable reply.

I screamed to Jeneil, who came running over. I tried to tease it out of her, but Rhema seemingly had no interest in saying it again.

She spun and bounced for a while longer and then wandered around the yard. She searched out every nook and cranny. She opened every door and peeked around every obstacle. Her curiosity and desire to interact with her surroundings was insatiable. She made her way from the shed to the sandbox and finally through the bushes to the farthest reaches of the yard, exploring its far corners.

I watched Brandon and Jeneil. I knew it had been a tough week for them. They were on guard.

The challenges around our parts tend to be intellectual and emotional. They have those too, but their challenges are also immediate and physical. They are constantly moving, perpetually chasing this glorious little whirling dervish of activity, trying desperately to keep her safe.

She made her way to the Slip and Slide where she splashed on the mat and ran in and out of the streaming water. Once, she imitated a noise Darby was making ‘Boing!” as she jumped and we all erupted in surprised delight. Darby was thrilled. “Mama! She said, boing! Did you hear that?” Jeneil and I were already celebrating.

Darby stepped on the edge of the Slip and Slide, causing the water to shoot up into the air. Rhema began to giggle. Encouraged, Darby did it again and again. Rhema’s giggles erupted into full on laughter.

As readers of Rhemashope know, Jeneil and Brandon are people of God. Their faith - while truthfully quite foreign to my existence – is beautiful to behold. Their trust in God structures and defines their lives.

I bring this up because I have to tell you, I saw God’s work in my backyard that afternoon. Not because Jeneil and Brandon spoke of Him. No, God was simply there, His presence spread across the grass and over the tops of the trees. Yes, God’s presence soared up into the clouds and came back to dance through the leaves when that beautiful little girl laughed.

I grabbed my camera. I needed to capture that laugh for Jeneil – to record the joy that was that moment – to give her something.

Rhema laughed with every fiber of her being, I clicked and my backyard was alight in God’s grace.

While Darby and the girls ran in and out of the water, Kendall reached the end of her rope. Despite the oppressive heat, she went into the house and changed into a favorite soft, long-sleeved shirt (which she wore backward – hood in front) and comfy pants. She came out and climbed  into the playhouse where she sprawled out and lazed alone in the shade. She had no interest in anything going on around her. She was done. We had asked an awful lot of the little punker over the previous two days. A full house, a sleep-over and brand new friends are enough to do my girl in. Hell, I was cooked too.

So when little Hope began to call her name, it was more than she could handle. “Kendall! Kendall! Kendall!’ she shouted to her, adorably relentless.

Kendall reverted back to an old response.

“Hee! Hoo! Hee! Hoo! Hee! Hoo!’ she hooted back, anxious and clearly out of words.

When she reaches that point, most kids at the very least give her a sideways look. But not Hope.

“Good calling, Kendall,” came the response.

It took me a minute to put it together. I could barely make sense of the fact that, since she had obviously mistaken Kendall’s distressed hooting for “Hee Hope” she had gone on to PRAISE her for using her name.

Hope is two. Though she has cheeks for days, she is a tiny little thing. Two. And she was praising and thereby rewarding my girl for using what she thought was her name. Two. I looked at Jeneil for confirmation. “Did she just say, ‘Good calling’?” I asked. She nodded and explained that she was in a peer modeling group.

Two.

I spent the rest of the afternoon watching her in awe. I continually reminded myself that this incredible little creature, the one who had language for days, the one who asked Darby if she wanted to play with her, the one who engaged each and every one of us in turn, the one who ran with abandon onto the Slip and Slide and swung like a little monkey on the swings - is TWO.

I watched her make her way joyfully through the scene. “This child,” I thought, “this little tiny person with wisdom and patience and determination well beyond her meager years – will lead us. She and an army of compatriots – kids like Roxie and Darby, will show us the way to where we need to be.”

Having watched the three of them over the course of the weekend, it became clearer than ever. There is so much to learn from these little wonders. They are patient, open, expressive, joyful, magnanimous, thoughtful, compassionate, wise and constantly affirming. They have hearts that contain the very best of all of us.

Indeed, for the second time in a single afternoon, I saw God. The collective grace of our children was nothing short of divine.

I often marvel at the way in which Jeneil and Brandon live their lives. Their faith is an enigma to me. It imbues their every action. For me, faith is new and a little awkward. It is something that stops by periodically, since I had children. It nearly always shows up unannounced.

When I first got to know Jeneil it didn’t take long to find out that she is a Christian. It’s as simple as knowing that she is a woman or a mother. It just is who she is.

I have always been of the live and let live mindset. Whether you choose to worship Jesus Christ, Allah or yellow pencils, I have always been hell bent on respecting and defending your right to do so. As long as (and this is big) you give me the same leeway – as long as you don’t feel the need to tell me who or what you think I should believe.

The capital C Christians that I have encountered over the years have always viewed me as a pet project. Their need to prosthelytize was very difficult for me. And so, based on my past experience I was concerned when I first met Jeneil that I might find myself at the other end of an uncomfortable sales pitch. Over time, I saw that my fears were unfounded. Or so I thought.

Jeneil and Brandon don’t sermonize. Apparently they don’t need to.

They simply bring God with them wherever they go. They bring Him in Rhema’s laughter. They bring Him in Hope’s very presence. They bring Him in their own faith and abiding love. And in so doing, they leave me no doubt of His existence.

Pretty sneaky, guys. Pretty sneaky.

drama

.

 

i love you too, scrappy doo

you know why?

cause when God had this mad crazy idea to challenge us with these extra special kids

He said to himself (or herself)

i’ll give her a friend

a really good friend

who will GET it like no one’s business

but first

i’ll put them on opposite ends of the country

yeah

that’ll be fun

then i’ll watch them find each other

you know what, God?

DONE

look what else we can do

~ Drama Mama in one of the hundreds of e-mails that fly back and forth between us – filling my heart, holding me up and sustaining me day after day

.

Yours truly with my dear friends, John Elder Robison and the inimitable Drama Mama

.

My computer is not big enough. The screen is too small. The keyboard falls woefully short. Words are puny, meek. They feel ridiculous. I don’t know where to start.

This past weekend was just too big. I have no idea how to record it, to capture it, to share it.

Drama Mama and her girls swooped in for a visit – two days, one night. Then they packed up their bags, took a piece of my heart and drove away.

They were with us for just two days, but they were two days of sheer magic.

Two days of comfort and joy and celebration.

Two days of truth and honesty and real life – unedited.

There was the incredible, glorious luxury of a shared language.

There was pride.

There was insecurity.

There were nerves laid raw then coated and soothed by the salve of friendship.

There were knowing, battle-weary smiles.

There were unsupressed tears.

There was love.

There was far more than I could process – still.

There was a husband who took care of all of us, then made himself scarce.

There was a chance to see him through others’ eyes.

There was gratitude and appreciation.

There was no judgement – none.

There was affirmation and validation – enough to carry me for years.

There was tenderness.

There was FOOD.

There were first sleep-overs and a delightfully innocent game of Truth or Dare.

There was FUN.

There were hugs …

… LOTS and LOTS of hugs …

There were new friends …

There was laughter …

… a glorious abundance of laughter …

There was a ‘wedding’ …

There were flower girls (which Kendall took literally, attempting to dress herself as a flower – the green dress as her stem and the pink tutu on her head as the flower) …

There was the gorgeous, incredible, delightful Kyra! (who clearly beat us to the shower and looks characteristically adorable in this picture – btch) …

There were ’space suits’ – one red; one blue …

There was chocolate cake that was far more interesting than space travel …

There were breaks on Daddy’s shoulders when ground level was just too much …

There were sillies …

Above all, there was complete and total acceptance.

There was the realization that there is no greater gift than friends who get it – who just simply get it. Who have no need for filtration nor translation. With whom we can be exactly who we are at every given moment.

Friends who microwave s’mores with you and tell you you are the the best baker EVER. Who stand next to you at the kitchen sink while you tear up and quietly tell you that you are a great mom. Who find you outside on the stoop after you have found your kid left behind by the pack - roaming alone – and who simply sit through the sadness and tell you that they know. Who just know.

A friend whose children set an entire city alight with their energy, curiosity and joy. Who drip their beauty and wisdom, empathy and compassion, integrity and love on everyone around them. Whose sense of themselves defies all reason and far surpasses any adult I know. Whose eldest child’s stunning grace belies the constant work that it takes to be where she is. Whose very bearing offers hope – we will be OK.

Yes, a friend whose children filled my heart until it threatened to come undone. Whose children I could barely stand to watch leave.

More than anything, there was the invaluable gift of knowing that we are not alone – that behind the computer screen are real, live friends. There was proof for each and every one of us that this community that we’ve created here in the ether – though it often feels so surreal – is full of tangible, wonderful, glorious people to whom we are bound by common experience, respect and love. There are friends whose hopes and dreams and sadness and fears are just like our own. Friends who walk beside us every step of the way. And who sometimes just sit on a stoop with us and be.

Yes, God – we found each other. What else indeed.

 

 

right on time

I’m over at Hopeful Parents today.

Please go there to read today’s post.

It’s about time.

No, not ‘it’s about time’ you went, but the post is about time.

Well, sort of.

Ok, not really.

But just go.

Check it out.

Tell me what you think.

Please?

Click here.

the hitchhiker

*

I picked up a hitchhiker last night. Don’t worry, Dad it’s a metaphor. Stay with me.

I was on my way home from a night out with work friends and there he was on the side of the road, looking all friendly and needy.

He jumped in and made himself comfortable. “No need for a seat belt,” he said in response to my sideways glance. “I’m indestructable.”

I looked over at him. He looked so familar. I couldn’t shake the feeling that we’d met somewhere – shared an intimacy of sorts. It hit me – that lost weekend in college. Damn. “Did we um, well, ya know – er, back in school?’ Kidding, Dad.

He laughed. “Do you really not recognize me, Jess? I’m always here, doll. Try as you might, you can never really shake me. I just AM.”

We chatted a while as I drove. He asked about my evening and I told him that I was so glad that it had ended when it did so that I could run home to see the kids before bed.

He threw his head back and laughed. His laugh was hollow, metallic. It gave me a chill.

“When will you get it, kid? I don’t buy the lines of bullsht that you try to sell yourself. Good thing I’m so patient. Try again.”

My chest grew tight. I could barely breathe.

“Ok, fine,” I said. “ I didn’t want the night to end early. I was hoping I’d have another cocktail. I wanted to get tipsy and need to leave my car in the city. I wanted to laugh too loudly and not care. I needed a BREAK, damn it.”

I had no idea why I was telling him all of this, but I found myself building steam. My companion simply smirked as I raged on.

“I’m tired, OK? I’m tired of being UP and ON all day and then running home to feel like I have to be UP and ON all night. I’m tired of being pulled in a million directions and feeling like I’m doing nothing well. I’m tired of feeling overwhelmed and underprepared. I’m tired of being tired.”

“I’m tired of feeling like spending time with one of my children means giving up time with the other. I’m tired of feeling like I’m missing so much at home. I’m tired of keeping so many balls in the air all the time. I’m tired of watching money flow through my hands like water. I’m tired of making big decisions. I’m tired of feeling like I have nothing left for my husband. I’m tired of autism. I’m tired of politics. I’m tired of wanting. I’m tired of trying to keep the demons at bay.”

“So, yeah – I needed a God damned night out. One night to take the filter off and be stupid. But here I am, driving home and feeling awful and angry at myself because the truth is that I’d really rather not be driving home right now. The GUILT is killing me.”

‘Well, it’s about time,” said the voice in the pasenger’s seat.

I’d nearly forgotten that I wasn’t alone.

“Huh?”

“You finally recognized me. I was beginning to take it personally.”

Ah yes, GUILT. How had I not realized it was HIM?

Damn.

“Remember when you called for a moratorium on me? That was cute. I liked the t-shirts. The guys at work got a big kick out of the whole gag. How long did that last, Jess? A day? Two?”

He laughed again.

I was getting irritated. His arrogance was more than I could stand. The sense of entitlement in that self-satisfied smirk was just too much.

I pulled into my driveway and told him to get the hell out of my car. He hopped out and stood next to the door. “You won’t get rid of me, darlin. You never really do,” he said as he hopped onto my hood.

I pulled into the garage and slammed the door as I got out of the car. I was angry. Enough, already. I can’t carry this guy around with me everywhere I go.

I tried to shove him off the hood as I walked by, but he hung tough.

“By the way, Jess,” he said as I fumbled with the basement door. “That weekend in college? You were spectacular.”

Mercy.

and i’m stickin to it

*

i promised to keep it light this week and by god i’m stickin’ to my guns. i will not follow the white rabbit down the rabbit hole. i will not pass go nor collect $200, which i’m sure is down to like $98 or so in this economy anyway. nope. my arms are folded, my chin is out.

i just won’t do it.

so i won’t tell you how sad it was last night when darby came into kendall’s room looking pale and scared and said, ‘mama, I think spaulding died.’

i won’t tell you how hard it was not to cry right along with her as she mourned the loss of her first pet.

i won’t tell you how my heart broke for my baby girl as she wept or how she just kept saying, ‘i’m just so sad, mama. i really loved him.’

i won’t tell you how my mind found its way to vicki forman or how my heart wondered just how she has survived the loss of her beautiful boy with such incredible grace and honesty.

i won’t tell you how bittersweet it was when darby thanked me for being there for her and for just letting her cry or how she wondered aloud how it was that i could have known exactly what she needed.

i won’t tell you how she asked matt if he could tell kendall that it would really be nice if maybe she could tell her that she was sorry that her fish had died.

i won’t tell you how awkward the scene was when kendall came in and parroted, ‘darby, i’m sorry your fish died’ or how touching it was that darby needed that from her sister.

no, none of that will fit into my ode to frivolous folly this week.

and so instead, i’ll leave you with this:

after all was said and done, darby and i cuddled together in my bed. we found the perfect distraction in last week’s episode of america’s got talent. i had already seen it; she had not. a group came on that i had been impressed with upon first viewing. i excitedly told her that they were great and i thought that she’d really enjoy their show.

she said, ‘ooh, i heard these guys are really good!’

i was puzzled. who the heck is she discussing america’s got talent with? i asked her where she had heard that from.

she looked up at me through red, teary eyes. with just the slightest hint of a smirk she said, ‘right here, mama. you just said it a second ago. hullo?’

yes, that’s what i choose to share. funny. cute. resilient.

yup. that’s my story and i’m stickin to it.