The Disability Blogger Weekend Link-up: contactless connections right here

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Like this: Love That Max: An extra-sweet sixteen

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An extra-sweet sixteen

Sabrina turns sixteen this week and, once again, I don't understand how my children keep getting older even though I'm not. !!! More than anything, she wanted to see her friends in person—she's been learning remotely since September. And so, outdoors-in-the-freezing-cold-socially-distant-party it was on Sunday. And it couldn't have been more Sabrina. 

Max decided he was having none of that girly hoopla and retreated to his grandparents' house. Could he have been a tad jealous? Lately, he has taken to chanting, "HA HA I'M EIGHTEEN! YOU'RE SIXTEEN!"

Sabrina wanted a pink theme. She has an amazing eye for design, and picked out a gorgeous flowery backdrop for photos and pretty vintage-y paper goods on Amazon. She asked for pink rock candy and pink M&Ms. The rest was up to me, and I was determined to give her the great time she deserved. 

I crowdsourced on Facebook and found Doughnut Evolution, a gourmet donut company that would set up a tent on our driveway and dole out deliciousness. 

An amazing local mom who runs Purple Door Designs with her mother generously offered to customize throws for the girls. (Mallary, there aren't enough thanks in the world for that.) 

We have a firepit. One neighbor lent me another. A different neighbor dropped off a heater to keep on our deck. 

Dave ordered a sushi platter (Sabrina's favorite food) and pizza.  

The M&Ms never arrived, but happily it's Valentine season and Saturday night I ordered bags of Valentine M&Ms for curbside pickup at Target, then spent a half hour picking out the red ones to stick with her pink theme. That's love. 

She WAS going to wear her pretty little summery dress and who was I to tell her any differently? (Eventually she put on a pair of fleece pants.)

Ben: "When are the donuts coming?" (Repeat 500 times.)

Photo opp! (Repeat 500 times.)

Six feet apart, but totally together

Hand-selected M&Ms taste even better. OK, not really.

Hand warmers in a cupcake stand: what a treat.

Winter? What winter? 

Maybe the most beautiful driveway sight I have ever seen

Birthday cake donut

S'mores donut

Chef Dave made the donuts in a Krups fryer and his helper, Ella, put on the toppings. To sweeten the deal, there was hot cocoa, too. I still haven't come down from my sugar high.

Couldn't resist

I thought it went really well. But I knew it when Sabrina gave me a heartfelt thanks, and grinned for the rest of the day. Which made me really, really happy. WIN.  

The Disability Blogger Weekend Link-up: Inaugural edition

What to do if you're new  

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Like this: Love That Max: Inaugural poet Amanda Gorman and the speech challenges she's overcome

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Inaugural poet Amanda Gorman and the speech challenges she's overcome

Yesterday's inauguration ceremony was beautiful, meaningful and cathartic. It gave me hope I haven't felt in forever. One of the most memorable parts was 22-year-old poet Amanda Gorman reading her poem "The Hill We Climb." Her words were powerful; she was amazingly poised and eloquent. Later in the day, I found out that she had grown up with speech and auditory processing issues when a friend shared a piece from Understood. Then I read up on her more. 

As a kid, Amanda had trouble articulating certain sounds. "My challenges were always, just for me, something that was reality," she said. "But I knew I had strengths, too, with words and writing." She told NPR that the letter "r" was especially tough for her, and she learned to sidestep certain phrases. "I'd want to say 'Girls can change the world' but I cannot say so many letters in that statement, so I'd say things like 'Young women can shape the globe.'"

She worked hard to perfect her sounds and pronunciation. "I don't look at my disability as a weakness," she told the L.A. Times. "It's made me the performer that I am and the storyteller that I strive to be." In 2014, she was named the Los Angeles Youth Poet Laureate. In 2015, she published her first book of poetry, The One For Whom Food Is Not Enough. Yesterday, she made history as the youngest known inaugural poet un U.S. history.

I watched Amanda read the poem again last night. I can't say I was astounded—as the mom of a very determined person with disabilities, I've seen how much can be overcome with sheer will. I know full well the slippery slope of praising someone with disabilities who's just living their life and doing their best. Still, I was heartened to know she was a member of my boy's club. And I felt glad that she's been vocal about her struggles, in the name of helping people see the ability in disability. 

For there is always light,

if only we're brave enough to see it 

if only we're brave enough to see it

What takes your mind off everything

My list of anxieties about life right now is long. My list of stuff that truly takes my minds off life is far shorter, but it does the job. This does not include the two-pound jar of Nutella sitting in our cupboard, which is in a category all its own. 

I can fully lose myself in work, and I'm grateful for the creative outlet and sense of purpose and accomplishment.

Here and there, I take lunchtime walks with Dave and they're cathartic. (Last night I read about people doing "fake commutes" involving long walks before breakfast.)  

Immersive activities in which I can't constantly look at my phone, like baking or doing a project with Ben, distract me from life. 

So do drives alone, especially at night when there's calm and quiet.

Organizing anything and everything: a seriously satisfying diversion. I literally just close the door to the areas where neatness is impossible like our so-called dining room, which is now Dave's office/man cave.

Playing piano takes me away; I recently tried it again after not touching ours for the better part of a decade. I'm rusty and plinking away, but it feels good.

And I can always escape to another world through a book or TV series—in recent months we've finished The Queen's Gambit (outstanding), The Undoing (pretty good) and Peaky Blinders (absolutely positively addictive and I've been up till 2:00 a.m. lately because of it). 

The best antidote is laughter, just as its always been. Ben and Max have taken to hanging out in the basement together and sometimes the sound of their giggles drifts upstairs and lifts me. Sabrina and I laugh over Ben's maneuvering and mannerisms. 

Friday, I walked downstairs and found Max enjoying a class dance party (he's still doing virtual schooling). As he did the moves to "Watch Me" Max laughed gleefully and I did, too. In that moment, he was living his best life. And I remembered to, as well. 

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The Disability Blogger Weekend Link-up is here for you

What to do if you're new  

This is a place to share a recent favorite post you've written or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: Love That Max: Barbie is not broken

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

20 years of for better, for worse, and everything in between

Today is twenty years since our "for better" began.

Twenty years of adventures of all kinds. 

We were so excited to be parents, one of life's greatest adventures. 

And then, unexpectedly, "for worse" was upon us. I cried for days, weeks, months. You'd say, "Honey, look at him, he's beautiful." And Max was. 

You were the warmest, sweetest, most big-hearted guy I'd ever met and I always knew you'd be an amazing dad. You turned out to be Superdad, there to support Max, and Super-partner, there to support me. 

All new parents learn how to be a team. We quickly learned how to be Max's medical team. I researched treatments, found good specialists and therapists, and exercised Max's little muscles to get them to loosen up.  

You'd play with him lots and often feed him (still true). You never hesitated to change his clothes, change his diapers, give him a bath, dash out in the middle of the night for medicine, do whatever. I'd get so distraught that Max couldn't retain food and anxious about what the future held for a child who couldn't eat or drink OK. You'd hold cups and spoons to his mouth with a smile.

We juggled the doctor appointments and therapies. Sometimes I'd take him to physical therapy at the hospital and you'd take him Thursday nights to another physical therapist or lie with him in the glass hyperbaric oxygen treatment chamber that was supposed to reinvigorate his brain, and we'd joke about how extra-smart it was going to make you. Saturday mornings were reserved for hippotherapy at Special Strides. Sunday mornings were the cranisocral therapist, followed by lunch. We'd comfort each other when we saw other babies doing their usual baby things.

Our bond was strengthened by our determination to do anything and everything within our powers for this boy. 

He had your good-natured personality. And good hair!

We've always shared a love of travel, and little getaways lifted our spirits. Remember when Max ate his body weight in paté at that mountain resort?! 

When Sabrina came along, you were in awe. She had you wrapped around her little finger from day one.

Once again, you proved to be an indefatigable dad, except for when you'd conk out on the couch. (File under: Some things never change, ha ha ha).

We've always found the fun. 

At Disney World...

On Amelia Island...

At our Vermont farm stay...

Trying Segways...

At our favorite Jersey Shore beach...

On a Disney Cruise...

In Rhode Island...

In Jamaica...

On our babymoon in The Poconos, before our next great adventure began.

  

Then came Ben. And once again, your love for our children made me fall in love with you all over again. 

We've shared moments of pride only the two of us can fully appreciate, like when Max had his bar mitzvah. 

You make just hanging out on a couch fun.

Celebrating Sabrina's bat mitzvah

I don't know of any dad more devoted than you. There is nothing you won't do to keep our children  healthy, occupied, entertained and content. How many times did you visit our local fire station with Max when he became obsessed with firefighters? How many times did you drive through the car wash when he was into them? How often have you and Max headed out for ice-cream at night? Countless.

I still can't believe you two walked across The Brooklyn Bridge.

Max's elementary school graduation. Much of his progress is because of
your encouragement, attention, love and care. 

You are his best friend.

You are the most fun playmate any of our children has.


You are always there to support them, in every which way.

Our trips may have stopped this past year because of the pandemic. But we have made so many incredible memories together, and there will be many more to come.

There will be more boys' getaways, too. Maybe one of these years, the two of us will even manage to escape.

Probably this won't happen again. 

Teaching Sabrina to drive this spring: A whole other adventure. If anyone has the patience for that, it's you. 

You know me better than anyone, you nurture me in every which way, and you've kept me sane throughout the pandemic. Even when we bicker, you are determined to make up because you are such the peacemaker. I will never forget watching you traipse up our attic stairs to deliver breakfast, lunch and sometimes even dinner as I work. Maybe we haven't had date nights lately, but just sitting with you, talking and watching TV never gets old. We don't, either, right? RIGHT?! 

We've been through so much, and we've always been there for each other. Here's to our next twenty years together. I love you.