I remember the day that Ollie’s daycare called to tell me that he had laughed for the first time. I’m ashamed to say that I didn’t believe them. At least, I wouldn’t until I heard it myself a few weeks later. And while it is not a common sound in our house, I can’t tell you the difference it made in my life to know that he COULD smile and laugh. Simply knowing whether he was happy or not made all the difference, because it was communication, at its basest form.

And then came the day that I got my first actual sign from him. He was sitting in my lap, facing out and, quite uncharacteristically, he tilted his head back to look me straight in the eye and licked his lips. Hungry. I almost peed myself trying to get up and get food for him. Since then, he’s learned “hungry,” “all done,” “more” and “ouchie.” Praise God for another layer of communication with my complicated boy.

Not too long ago, I got the following text.

Oliver can say him name. Out loud. He’s only ever spoken in vowel sounds and this is no different, but now, he’s using syllables. “Ah. Ih. Eh.” And most wonderful of all, he knows we can understand him. And from the look of sheer braggadocio that he gets when he does it, that seems to be a bigger gift to him than it is to me.

For a long time, I’ve believed that, with much training and patience, Ollie would be able to answer yes and no questions with the help of a button switch toy. He clearly understands most of what we’re saying and does hundreds of various actions on command by now. I’ve been pushing his therapists to move toward this goal, but it’s been taking a long time to get everyone on board with a toy made just for him. And patience is tooooootally my strong point.

Last Thursday night, boy and I were hanging out on our own and I thought, “You know what? He’s not always going to have a switch toy with him. He should know how to say yes and no with signs for when he doesn’t.” So, being the expert therapist that I am, I grabbed a couple movements that he does naturally (kicking for yes, arm swipes for no) and started work. Yes, yes, yes, no, no, no…We mentally settled in for the first of what would probably be months of training sessions.

About ten minutes later, I asked him, “Ollie, are you hungry?” He looked me square in the eye and unleashed a kick that would make Chuck Norris proud. I stared at him. “So….you’re saying you are hungry.” Kick. Remember the last time this happened and almost peeing myself? Try tripling that heart rate and you’ll have a good idea of where I was at this moment.

I tore over to get some food and get it back it to him. He frowned and spit it back out. “What’s the matter, bud? Don’t you like this kind of food?” He paused, and so did my breathing. That little elbow raised, ever so slightly. No. I was pretty sure I was going to have a heart attack by now, but cool was kept. “Do you want to eat more of it?” Elbow. No. “Do you want a different food?” Kick. Yes.

1.5 seconds later I have a new food torn open and in his mouth. “How’s this one, Ollie? Do you like it?” He smiled and kicked. Yes, I will eat this food. And he did. And I couldn’t speak for the rest of the evening.

We spent the rest of the weekend practicing and having full conversations like this. We laughed. We both sobbed when I couldn’t understand. We yelled at how unfair it is to not be able to move exactly when we want our body to move. And we sang. Or at least I did.

Ollie has always yelled along when I sang to him, and I’ve always just assumed he was singing. He comes from a long line of singers and he is a total music snob, making it very clear when he does or does not like the music he is hearing. Two weeks ago, he told his case worker to please stop singing to him because she was hurting his ears. We’re working on communication first, people. Social graces later.

But this time, I have a secret. I can ask him. As he yelled along to my singing, I stopped and looked at him over my shoulder. “Ollie, are you singing with Mama?” He stopped for one second, looked at me with incredulity, kicked so hard he almost launched himself out of my arms, and went back to, for sure, singing. This time, singing with a big, joyous, wide-open grinning mouth. Now mommy knows I can sing, too.

This story is good enough to end here. And if it did, I’d die happy. But if you’re already crying, hold on. It gets worse. Early last week, he’d had a rough day at school, lots of seizures and cold issues. He was moody and lethargic when I picked him up. He wouldn’t interact or respond at all. I eventually took him into his room, held him and sang him a few songs. That perked him up. I swung him up to face me, his favorite talking position. Now that he felt better, he had LOTS to say. He chattered and talked at me non-stop for about five minutes. “Ah, ya, yah, oooh, ahehoh ya me,” etc. I won’t repeat everything he said because it wasn’t all kosher. But eventually, he slowed down and I finally got a word in edgewise. “I love you, Ollie,” I said. He smiled. He thought. Hard. Then, with every shred of energy he had, he kicked his little body up and said, “I, Ah, Oo, Mama.”

 

 

 

“Did you just say, ‘I love you, Mama?”

 

 

 

Ollie looked at me with a look I’ve never seen. It was pure shock, surprise and then……….JOY. He smiled so big his face nearly broke. Then he let out a huge yell and kicked a ninja kick. YES.

I didn’t sleep at all that night. And to tell the truth, I didn’t even tell this entire story, or announce this new development to more than two people all week. I don’t know why. It felt…too big to tell. Too unbelievable to tell. And I’m sure there are already some of you that are thinking, “How wonderful that Alysa can believe her son talked to her.” It’s true, he has not agreed to do much of this on camera yet. He knows when he’s being asked to perform as a party trick. And he’d rather give himself a seizure and mess up the whole video than perform for me. So far. But I shall prevail.

It’s not every time, it’s not perfect and it’s NOT easy, but I can talk to my boy. And believe it or not, ever since he’s realized that he can be understood, he has been pushing himself to find new, creative ways to use his body to communicate with me. He’s also having more tantrums when Mommy is just too dense to get his new word. I don’t blame him. Sometimes I want to have a tantrum over my denseness, too.

But the kraken has been released. Not only can Oliver talk, it turns out he’s always understood what yes and no meant. He just needed to know how to say them his way. And I am humbled at the thought of how much more my boy understands EVERYTHING we say around him than any of us thought.

He is there. He is smart. He has opinions. He is resourceful. He is stubborn.

 

And he can sing.

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  • Eric stubbertJanuary 22, 2017 - 7:56 pm

    Awesome!ReplyCancel

  • NancyJanuary 22, 2017 - 8:45 pm

    What a great great post! Just fantastic! Loved reading this!ReplyCancel

  • NikiJanuary 22, 2017 - 8:56 pm

    ❤😢😊😢😊😢😊😢❤ makes my heart smile so hard!!!ReplyCancel

  • AnonymousJanuary 23, 2017 - 9:13 pm

    I’m Crying!!! So sweet!!!ReplyCancel

Hi there. My name is Alysa. I’m not dead. I’ve just been silent. For a long time.

Quick update: Oliver, my second-born, is nearly three and healthy. He’s doing all kinds of things that were never expected, which I’ll get to later. If you don’t remember about lissencephaly, you can read the very engaging copy I found online the day he was diagnosed at the link above. The short version is, he was born with a smooth brain. About as worst-case scenario of an MRI as there is. At 5-weeks-old, the doctors told us not to expect any development skills past a 4- to 6-month-old and to take him home and enjoy him now – because it is the only time he’ll ever be normal. Harsh, but true. And frankly, sometimes I like my truths to be harsh.

Margot, Ollie’s big sister, is almost six and in Kindergarten. She is quite the opposite – reading at second grade level, killer vocabulary, logic that makes my head hurt. And always, ALWAYS on her baby brother’s side.


The instant people learn about my son, they, almost comedically, tell me how “extraordinary” I am. Total strangers stop me mid sentence to put it out there. I know it’s meant well and probably genuine. But it’s also not what I think and not what I need.

When you spend every single day wrapped up in medication schedule and refills, therapy sessions, wheelchair accessibility, strategic planning for simple shopping trips, nutrition calculations, monitoring for choking, making sure that every interaction is beneficial to his development, finding a way for every experience to be enjoyed at his level, watching and counting seizures as they take over his little body, guessing what’s wrong with him when he can’t tell you, loading and unloading equipment, planning for future equipment needs as he grows, praying for four hours of sleep and oh, say, trying to be on time and on-point for a very good full-time creative job – you don’t care if you’re extraordinary. I want to be ordinary.

Maybe I’ve been sulking for the last year. I’ve definitely been selfish to keep all of Ollie’s updates to myself. But maybe I felt like if I just kept the details to myself that I might, maybe, just blend in with ordinary people a little better.

So why now? I’ve had a weird week. On two separate occasions, I’ve come into contact with people that are just starting their journey of grief. In this case, it was loss of a child and divorce. But grief, loss and sorrow – the kinds that gnaw at your insides and tell you you can never be normal again – they’re not synonymous with any particular tragedy. And on both counts, I found myself saying the same thing – “You’re in a dark place right now. It will take you a long, long time come out, but it will happen. And don’t let anyone tell you it gets better. It doesn’t. It just gets normal. And that will be ok. In the meantime, I know you and I see you and I’m here – to sit in silence, sob deep, ugly cries or pound the walls down.”

Ironically, in the last three years, I’ve found myself approached by all number of friends and colleagues as they’ve initially suffered their own losses – death, diagnoses, watching their children suffer. And the truth is, they would never have come to me before. Because grief is a club. A really, really sucky club that you don’t want to go in. But once you’re in, you see the other members everywhere. And you realize that only they can really understand you.

It actually felt cathartic to speak to them from a veteran’s point of view. I’m now able to pass on the things that have shaped me and gotten me through. The way this thing has expanded my ribcage to make room for the excess sorrow and excess joy. And then I became humbled.

The day I got Ollie’s diagnosis, my vision went black. It was as if his entire future got wiped through with a messy sponge – not gone, but not legible either. And there was NOTHING out there for this research fanatic to turn to on the entire internet. Except for one. I found one mom’s lovely blog about her beautiful boy Rowan and his big sister. (Hi Erin! Remember me and that random email you got three years ago?) I devoured every post on her blog in one night. It gave me insights that I needed and a vision into the future. A future that included loving and being proud of my boy JUST as much as I would if he were “normal.” Erin was so sweet to answer me and tell me about her experience, as well. Even now, if I need to know something about Ollie and my dad (who’s a doctor) is out of guesses, I don’t turn to medical professionals. I turn to the support boards of other Liss parents. Because they know.

Paul said it this way: “All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.” (2 Cor. 1: 3-4, MSG)

That is why I am going to blog again, if it takes every shred of my pride, effort and sleep. Because someone else out there right now is getting news that will shatter them. And they might just be searching for someone, somewhere in the vast stretches of our “connected society” that could actually relate to them. And if I stay silent, I cheat them of the very thing that brought me through the darkness.

Over time, I’m going to make a lot of changes to the format and layout you see now. It will focus less on design and more on us- our broken, stubborn, scrappy little family. Because I believe in this day and age, there are enough blogs on pretty, perfect things. And not enough on the harsh truths that need to be said in order to pull us back into community with each other.

And by the way, the next time you meet a special needs parent and you’re freaking out internally because of my earlier rant, just say five little words: “You’re doing a good job.” That’s all we want. Not to be extraordinary, but to be enough.

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  • Allison DoyelJanuary 16, 2017 - 11:29 pm

    Your doing a good job!! And you’re not alone. It really is tough sometimes to have a special needs kido…lots of tears, heartache and fear!!! But I try and just stop and really enjoy the sweet moments and the small advancements. Praying for your family!!!ReplyCancel

    • AlysaJanuary 17, 2017 - 6:35 am

      Thanks Allison! Good luck with your kiddos!ReplyCancel

  • Carol NewmyerJanuary 17, 2017 - 12:18 am

    Alysa, you’re achieving exactly what you described. We were being seated at a local restaurant and the family behind us had a chair that looked just like Ollie’s. When it was time for them to leave, I moved chairs at our table to make room for their son to get out and she apologized a few times. I told her not to worry about it, that we had friends who have a similar chair and asked what her son’s name was. She looked relieved and said, “Ollie? Alysa helped us get this chair; she was so helpful!” Blog or no, you reach people and they reach out to you.ReplyCancel

    • AlysaJanuary 17, 2017 - 6:36 am

      I don’t even know who that was! Hm…ReplyCancel

  • Vonda BeermanJanuary 18, 2017 - 12:28 pm

    Alysa,
    Beautiful article, keep on!!ReplyCancel

  • Karen WardJanuary 23, 2017 - 6:54 pm

    Thank youReplyCancel

In general, little man has been doing very well over the last week or two. Maybe it’s because he’s not been sick and it clears his brain. Maybe his teething has eased a little. Every time Ollie has a breakthrough we hold our breath, because it could mean the beginning of a new hopeful phase, and it could be that he gets sick or has another bout of seizures that inevitably makes him regress.

But this week, I saw my son purposefully communicate with me for the first time. It was so simple, but for any special-needs parents that have non-communicative children, you have an idea of its significance. Oliver is very sweet and very reactive to us, something that many of his buddies are not. But he’s never purposefully talked to us or sought our eye contact specifically. This weekend, I had him sitting on my lap, facing out and he tipped his whole head back and made instant eye contact (also a new behavior, knowing I’m behind him, looking for me and reacting to me once he does). He held that eye contact and made obvious sucking movements with his lips. I gasped, asked him “Are you hungry, buddy? Do you want food?” His eyes lit up and he gave me an ear-to-ear smile. I tried not to scream with excitement and rushed to get him his food. Once I was 3/4 done with his food container, he looked up at me again and scowled, shutting his mouth. “Are you all done?” I asked. His classic Ollie scowl continued and a line of food made its way out his mouth in a spit of acknowledgment. Ok, so two messages in one day. He’s done either “I’m hungry,” or “I want my paci,” to me three times since then.

IMG_0799Ollie’s favorite game is “One, Two, Three….” The rules are simple. You say the numbers in succession and on three, you must do something jiggly, tickly or surprising (NOT scary surprising, mind you) to entertain the boy. In return, you will get smiles by the time you hit number two (that’s anticipation, people, take notes!) and if you’re really blessed, some Ollie giggles. We do it constantly, because it makes us happy to see him prove doctors wrong (many told us not to expect him to ever learn patterns, cause and effect or behaviors). And for that smile.

Here’s Ollie playing with Carrie, his babysitter and Michelle, his Interventionist – two of my favorite people, incidentally.

Every night, Ollie gets a dose of a fairly strong muscle relaxer and seizure med. I hate that he takes it. But man, is he ever ADORABLE when he’s loopy! Chatty McChatterson emerges and he regales us with stories of his adventures for minutes at a time, up to 30-minute bursts. Last night was no exception. And the best part is, I happened to leave the video going on the floor when the giggles began. But the part I REALLY want you to pay attention to is after Daddy starts the game. At some point, Ollie makes a clearly different noise – one he’s never made before – that sounds very much like, “One….” Do you think he’s playing along, or even asking his Daddy to do it again? Or did he just make a new sound while drunk? What do you think? Also tonight, while giggling with Margot in bed, I asked him over and over if he loved Margot. He said another new sound, one that sounded like, “Mah-ohhhh.” Hm. Probably nothing. But a mommy can have a totally irrational moment, can’t she?

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  • Jeanette Rothe JohnsonApril 23, 2015 - 3:31 am

    God made our brains a marvelous thinkng machine. I believe Oliver said one. What a precious fabulous moment.ReplyCancel

  • Danielle Hoskins MaynorApril 23, 2015 - 4:02 am

    I believe. And I love every bit of this story!ReplyCancel

  • Steve DarmodyApril 23, 2015 - 11:33 am

    “One” most definitely! It’s now my favorite number!ReplyCancel

  • Karla Lopez-DechavezApril 23, 2015 - 11:34 am

    What a precious, precious boy!! Post more videos of him!! He’s a darling. And you and Alan are incredible parents to him. Love you guys!ReplyCancel

  • Joni Whitacre DarmodyApril 23, 2015 - 11:38 am

    My heart just skipped a beat when I heard Ollie say “One.” Oh yes! He DEFINITELY said it! ONE!!!!!ReplyCancel

  • Nichole Roberts DeFoorApril 23, 2015 - 11:46 am

    He is so preciousReplyCancel

  • Michal Anne WhitcombApril 23, 2015 - 12:43 pm

    Amazing!! He’s doing so well! Love that boy.ReplyCancel

  • Greg BatlaApril 23, 2015 - 2:41 pm

    Adorable!! Thanks for taking the time to share such precious moments! Praying for y’all…ReplyCancel

  • Gayle TuckerApril 23, 2015 - 2:42 pm

    This is wonderful, Alysa! Thank you so much for sharing these videos and stories. It’s so exciting to see his progress. Love you guys so much!!ReplyCancel

  • Macherie BarberApril 23, 2015 - 3:08 pm

    Sounded like a “one” to me. Such a sweet smile.ReplyCancel

  • Carole DarmodyApril 24, 2015 - 6:07 pm

    I keep watching Olies videos over & over! So happy to see his progress!ReplyCancel

  • Lauren Jennifer HeatherlyAugust 29, 2015 - 5:49 pm

    It was so nice to meet your family today! Oliver is beautiful! I look forward to following your blogReplyCancel

I love vacation planning. Even when they’re not my vacations. I like pretending they’re mine. I mean this in the most uncreepy way possible, of course. I will often hear about a friend’s upcoming trip somewhere and think, “What would I do if I was going there?” And then I dedicate an evening daydreaming about travel. …And I am really, really sad for myself now that I’ve heard that out loud.

Today’s pretend vacation is to the magical shores of Hawaii – Maui or Oahu, to be specific. My lovely boss is getting married soon and they’re planning their honeymoon. So I decided to window shop. Monica, I promise not be lurking behind the curtains at any of these places should you choose to pursue them. I will be dutifully holding down the fort at my desk, totally NOT surfing the internet looking at pictures of white, sandy shores and turquoise waters.

We visited Oahu together about five years ago and it was our favorite trip ever. We stayed in a hotel that time and it was lovely, but since then, we’ve developed a love for the personal feeling of living like locals in AirBnB spaces around the world. (This link will give you $25 off your first booking, too! You’re welcome.) Finding good-looking apartments or homes near beaches is infamously difficult. Partially it’s due to the constant humidity and the fact that doors and windows are open to the elements so often. People don’t always buy pretty things and the weather-hardy things are not very pretty. And partially it’s because there’s the assumption that you’re only there to look at the view. Yes and no. I like both an inspiring view and a space that captures a new part of my imagination. Here’s my top 10 favorites:

westofhawaii

1. Secluded Beach Bungalow // $169

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2. Octagon Studio // $235

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3. Kailua Beach Studio // $200

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4. Dwell-Style Mountain Retreat // $160

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5. Kailua Beachside Cottage Here and Here // $200

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6. Ginger Falls // $185

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7. Modern Condo // $160

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8. Hunakai Cottage // $213

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9. Leeward Ocean-Front Condo // $135

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10. Hawaii Surf-Inspired Home // $170

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You can see these and a few more picks for Oahu and Maui here. If you’ll excuse me, I’m going to go back to mentally sunning myself on Lanikai beach now.

If you’re going on a trip and you want me to do a post scouting out some fun places to stay while there, shoot me a message or leave me a comment!

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Here are some new dresses for your smartphone this Easter. They’ll be so pretty. Hope has a new meaning for me this year. I can’t wait for the day that I get to have Jesus reintroduce me to my son and get to know him in his full personality and potential. Hey, make sure you’re there to see it, too, ok?

easterphonewallpapers
// Nehemaiah 8:10b // Isaiah 43:19 // Isaiah 53:5 // Hosea 6:3 // Isaiah 42:10 // Psalm 107:14 //

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