Belonging

Sitting on the school steps waiting for pickup, I am astounded. So astounded that I start counting: 1, 2, 3, 4567, 8… 9! Nine kids who have Down syndrome at Lydia’s school! Nine children who look just like my daughter, cheerfully walking by in a line. I am so delighted & struck by the sight that later describing it to Dan I use my best Oprah impression to capture what it felt like to be there: “You get an extra chromosome! And YOU get an extra chromosome!”

For most of her edu, Lydia has been the only child w/ DS in her class. Last year she was the only one in her entire school. At the elementary my boys attend, there are none. Our district clusters disabled students K-6 into “central location” schools in order to consolidate resources. This is not my favorite arrangement for many reasons… They move us around, Lydia doesn’t get to attend w/ her brothers or neighborhood friends, inclusion is typically less, & the classes for these students are large & place heavy burdens on teachers & staff. BUT, today, for just a moment, I focused on an unforeseen positive: almost a dozen kiddos at one location who all share the same extra light.

This particular school is a pillar in the district & community. A few yrs ago they tried to move the Sped program out of it, & the community revolted. “NO. We want these kids here. We’ve built a program that we are proud of. We are integrated & they are part of us. The program stays.” And because of the outcry, it did. So as I watch Lydia’s classmates file by in numbers I usually only see once or twice a yr at large events, I think, “Wow. What a gift for this school. To interact w/ this happy crew all the time. To see them all over—on the playground, in the halls, in class & at lunch. To have so many kids w/ disabilities that it’s not even uncommon anymore… it just IS.” And then I thought of the hundreds of students at my sons’ school who will have absolutely no interaction w/ children w/ disabilities until they move on to junior high. What a cavernous hole in the social make up. What undeveloped skills for those peers. What a loss.

“Hi!” says a friend waving to me. “There’s Lydia!” says another. I smile. She already belongs.

Back to School

Got through the first (very short) week of school ✅
This one was a rough one for me—3 schools, one headed into junior high, & Lydia doing her first full-day experience. My heart was everywhere at once 🥴
The kids weathered it fine, however; all smiles and cheer. Glad I worried. 😅 (I’ll always worry. 💛)

The Time to Be Kind is Always

It’s important to ALWAYS be inclusive. Because you never know who is watching. You never know when someone you love is going to need you. And you always want to be associated with unconditional love & respect, rather than hurt & prejudice.

I’ve had a few opportunities now to face life-changing diagnoses. The experiences are always huge, unique, & take time to absorb; but there are some interesting common threads that run through them all.

When you’re rocked with a new situation, (if me) after your initial reaction, you eventually try to establish stability within the chaos. And part of that process is establishing “What do I know?” What do I know about this condition? Who have I seen navigate similar circumstances? Where can I get the best information to build on? And yes… how have I seen the world react to individuals in this—now my—situation? How can I expect to fit into the grand scheme of things moving forward?

And to answer all these questions, you run back through your mind cataloging everything you can remember hearing about said diagnosis, trying to establish a foundation of facts, as well as expectations. Every connection you can possibly make to The New Thing.

Some of the most painful moments I have felt as a disability parent have come after the diagnosis, when I realize all the harmful perceptions that exist about my child’s new life. It’s amazing how they flood in. How I was swimming in them before, in blissful ignorance—heaven forbid contributing to toxic dialogue—but now, the blinders are ripped off. I see the prejudice, ableism, & ignorance for what they are. And it BURNS. That is one thing that makes becoming a disability parent SO terrifying: seeing your child so vulnerable in the world’s cruel eyes.

These messages can be overt, or subtle. “We just want a HEALTHY baby” is a sneaky one. Using the “r word” - less subtle. Some things you don’t even consider ableist… UNTIL.

Now that Lydia is diagnosed, & in my search for stability, I remember all the times people reached out to me to say, “Make sure you avoid XYZ so your child doesn’t get autism!!” Let me decode the subtle hidden messages in those statements, from a parent of a child with autism: “Autism is bad. I would never want a child with autism. Autism is to be avoided at all costs. Autism can be controlled. Good parents & families do NOT have autism.”

SO much education is lacking here, but beyond that, these messages are EXTREMELY toxic. This diagnosis was out of our control—the doctors focus on GENES. In addition, there is not a day since we knew I was pregnant that we have not made every decision with Lydia’s well-being in mind. And she is WONDERFUL. Now more than ever we need support. But where do we turn? Will it be to those who years in advance proved that they are willing to blame, fear, & be prejudiced against those with disabilities & their families; or to those who have demonstrated all along unconditional love for others & a willingness to learn & seek to understand?

My experience has been that by the time ppl need you, you’ve likely already shown them who you are & whether or not you can be counted on. We can always learn & change & trust can always be rebuilt, but that is a much harder road, & you are likely to miss CRITICAL opportunities to love & strengthen relationships that are important to you.

So watch your worlds. Be kind & inclusive & ready to accept & love, ALWAYS.

There are a lot of other scenarios this applies to as well. Food for thought.

Because Access to Resources Matters

Today is a red-letter day. A “day our lives changed” day. A day we have fought for actively for over a year & a half, & that we have anticipated for longer. Today is the day Lydia was diagnosed with autism. And we are celebrating.
Not only do we celebrate the marvelous & unique human being Lydie is & all that she brings into our lives, but today we celebrate that finally, FINALLY, she will have access to help she absolutely needs to be her fully actualized self. We have been pounding on this door for a long time.
Having a child with complex needs is like constantly trying to solve a mystery, while simultaneously battling prejudice at every turn. I won’t sugar coat it. Over a year ago, maybe even more (the appts start to blend), I approached Lydia’s pediatrician with a concern: “I think Lydia might have autism, should we have her screened?” Our concerns were completely dismissed; but the kicker was, when I pushed back, this statement: “You can try all the therapy you want, but at the end of the day, she’s still going to be… her.”
Yes. A medical professional said that to my face. And in case you missed it, let me translate the insinuation for you: “Your daughter has Down syndrome. Her potential is limited & always will be no matter what you try. Is it really worth all this?”
I won’t go into the absolute rage & futility I felt in that moment, but I’m sure you can imagine. Unfortunately, this viewpoint is not uncommon. “Why invest in these individuals? What can they possibly become or contribute?” When some see Down syndrome, unfortunately all they see is a lost cause. They stop SEEING entirely.
I do not expect Lydia to win a Nobel Prize & I have become an expert at tempering expectations—but that practice goes two ways: I know better now than to say “never,” “not even,” “not enough.” I know infinite worth outside of accomplishment, & I know hope. I know persistence & slow progress toward goals. I know what it is to believe that EVERY person has something of value to contribute & I believe in enabling those contributions. Lydia has single-handedly taught me some of the most valuable lessons of my life.
Today opens a lot of doors to a beautiful future.

Sweet Dreamer

If it swings, she will sleep. 🥰

Floating Memories

My mind is like a trap. And also an onion. For those I meet that only reach the outer-most layers of acquaintance, I’m SUPER bad with names. Sorry. But if our relationship has progressed to the inner, sweeter layers of friendship, chances are that I’ve collected an absurd and occasionally awkward amount of data on you. My artist mind, always tuned in to details & my senses; my anxiety & its ever-present hyper vigilance; and my deep fascination/love of people & desire to understand them, together result in a very active information-gathering brain. Always.
Consequently, there’s a whole lot of STUFF I’ve got stored in my brain somewhere, waiting for the most random times to jump out & grab my attention.
Secret confessions, fragments of hearts, odes to long-dead relationships, hovering in the limbo of my mind like lost library books… ”Things I diligently memorized about you.”
This image, oddly, brought up one of those from the deep dark filing cabinets of my mind. Rather than sharing that specific useless and, who knows, perhaps no longer true anecdote (for we all change), I dedicate this caption to the sentimental, poetic notion that unpredictable pieces of ourselves continue to exist, unable to be suppressed, in those we’ve cared about, long after we cease to be.

She Knows

I was hurting. Dan was just home from work and had asked me, “How was your day?” “Well…” I started before launching into what had happened and the emotional fallout. I wasn’t crying or yelling; in fact, I don’t know that my voice was much different than normal—I was just concerned. Hurting.
During our discussion Lydia snuck up and wrapped her arms around my leg.
I’ve been a mom with kids hanging on my body for almost thirteen years now, so I noted her presence and probably patted her head, but didn’t think much of it. My focus remained on Dan as my story continued.
Lydia, who is generally non-speaking, reached her arms up, indicating that she wanted to be held. This was unusual—she’s six years old and rarely wants to be held anymore, but she also weighs as much as a toddler and she’s cute, so I humored her and swung her up on my hip. I mom-laughed at her & turned back to Dan, continuing on once more. 😥
But Lydia wasn’t done. She wrapped her arms around me, and gave me a kiss. Now, my girl does not hand out hugs. She loves us, we know it, and we have just accepted that her love language is teasing and laughter and a good game of chase/steal your stuff, but not physical affection. I would even go so far as to say she mostly doesn’t even like hugs. But here we were.
I stopped my tale of woe, attention fully captured.
“Oh!” I responded, comprehending. “You KNOW, don’t you?” And she must have, because that love and those kisses did not stop. She must have recognized Mommy was hurting. And she was showing up.
“Thank you, thank you,” I told her as I hugged & kissed her back. “Thank you, sweet girl.”
She smiled and laughed. And when I put her down, she held my hand and didn’t let go.

Ode to Summer

Shadows on fences. Ping pong and badminton. Bubble wands. Lost teeth. Hammock swings. Four wheel rides. Dirty toes. Cousins. Damp swimming suits. New chapter books. Old chapter books. Fingernail polish. Dance parties. Sick days. Late mornings. Late nights. Weird meals. Bug spray. Bug bites. Joyful parties. Overstimulation. Go go go. So bored. Funky tan lines. Ripe fruit. Dead grass. Sprinkler games. Tired snuggles. You smell weird. We can’t stop. Please don’t stop. Goes too fast. Summer.

Mysteries Revealed

Wigwam. She’s been saying it for months, maybe even a year. Always with the same inflection, always with great enthusiasm. “Wigwam!” Except not exactly wigwam; that’s just what my brain has equated it to in a desperate search for meaning and connection. Her word/pronunciation is more like “waygwum!” And it always brings such joy. It has always clearly meant something. For months on end whenever she has said this word, and it’s been a lot—daily, even—I have desperately feigned understanding and replied weakly, “Uhuh!” Because without any additional context clues, what else is a mother to do?

I hear you, child. What you’re saying is important—so important. Please keep telling me. I’ll figure it out, someday.

Well, today was the day. Lydia was watching a show on the iPad; one she’s watched a million times before—and if not that exact one, a variation of it. It’s just a kid playing at a park while his mom films him on the toys. For some reason Lydia could watch this stuff for hours—and then she recreates what she has seen by acting it out either with her toys in her hands, or with her own body on our furniture 😂

Looking over her shoulder, I noted the show and said, “Oh! Playground!” to which she responded happily, “Playground!!” And I heard it. The long-familiar “waygwum” instantly morphed into a beloved, half-articulated “playground!”

It was like discovering a chunk of gold, this brand new, clearly valued word in our now shared vocabulary. The inflection, the joy, and finally the meaning falling into place.

PLAYGROUND!!! Oh happy, happy day! 🛝

Day Dreams

Remember Yosemite? ⛰️✨ What do you have to do to live there? That’s the lottery I want to win. 😅

Strength

One of my boys’ favorite things to do when we’re out hiking is to find small pieces of sandstone and snap or crush them with their bare hands.

“Mom, see this rock?” they’ll say.
“Hah!” As they smush it to dust. 😅

So satisfying to feel strong enough to crush rocks into dust with your bare hands! It never gets old to them; they do it multiple times, every single trip (and I of course am always amazed 😉).

It seems silly, especially since we usually focus on how being out in nature teaches us about how small we are, but I think the ‘rock-crushing’ moments out there are equally important. When you figure out you ARE strong enough to hike that trail that tested you multiple times. Or you ARE strong enough to submerge yourself in a mountain lake. Or camp outside, or survive the blisters, or stomach an over-used National Park outhouse (can we agree they are the worst?), or whatever it is. Nature reminds us that we are small and young and part of something so, so, big; but also that we can do hard things.

Even if it’s just crushing rocks. (Or snapping, like above.)😊

Annual Heart Walk & Thoughts

Today was the annual heart walk. We don’t talk about Lydia’s back-to-back heart surgeries much at home—I don’t like to remind myself, let alone the kids. But on heart walk days, we remember. We remember so that we can appreciate our little living miracle & keep some perspective on this life journey. It’s funny to me how shockingly little the boys remember & the questions they ask me: “When did she have surgery? What was it like?” So I tell them; every year a little bit more. This year I told them about her tiny heart, the size of a strawberry, & its three holes that needed to be fixed. I told them about how I remember signing the papers to give permission for her surgery & reading a little paragraph at the end explaining that in 3-5% of cases, something could go wrong during the surgery resulting in complications. I remember thinking “3-5% is so small! That definitely won’t be us,” but still feeling the weight—the astronomical weight—of handing my child’s life over to the surgeon, & knowing that I had to; it was her best chance. Her only chance.
Then the surgeon came back after hours of intricate, life-saving work on that teeny little heart. The holes were closed! 🙏🏻 But there WERE complications. That 3-5%? That was us.
And I have never looked at numbers the same again. I never will.

Odds of having a baby with DS in the US: 1:700
Odds of a baby w/ DS having a congenital heart defect: 50%
Odds of any congenital heart defect being a critical heart defect requiring surgery before age 1: 25%
Odds of pediatric heart surgery complications: 3-5%
Percentage of pediatric pacemaker users out of total pacemaker population: 1%

✨Put all those criteria together, and we have one heck of a rare girl. 🥰✨

I especially wanted to do the walk this year because Lydia will be having her pacemaker replaced for the first time in a couple of months, so it all feels very close right now. As we watched her running along the path with her brothers, this child who came to us so weak she couldn’t cry or eat, now so full of life and joy, both Dan & I got choked up. This beautiful, surprising, crazy hard life where each moment is so precious.

Recurring Themes

Forever intrigued by all of life’s paths and their unexpected destinations.

What's in a Name

Dan had to work late tonight & it threw off the whole routine. He missed dinner & bedtime, which is the key Daddy-daughter element of the day. Sometimes they watch sports, sometimes they play, always they sing. Lately he’s been working on feeding therapy with Lydia & he gets her to do things none of the rest of us do 🙏🏻 It’s not often that he misses a night, but a special event at the hospital kept him at work, so Lydia had to settle for Mom. When I told her it was time to brush her teeth, that’s when she really keyed in that things were awry. Dinner, fine. But Dad does NOT miss the sacred bedtime routine! Her confusion was so great that it prompted the extraordinary: she simultaneously signed & verbally asked me, “Daddy?”
Sweet Lyds knows our names but almost never uses them. She calls other people by their names much more frequently. We hear the names of her teachers at school & church regularly. Grandma & grandpa are also very frequent. Then her brothers’ names. But very very rarely does she say “Daddy,” & never ever does she say “Mama” or “Mom.” We don’t know why this is. I have an early video of her imitating us saying the word “mama,” but calling me something never “caught on.” In fact, she wanted & needed ME the other day & just sort of whined, “Mmmmmm!” & we laughed as I joked, “Is that it?! Is that my name?!”
So “Daddy” was a big deal. She MISSED him.

To smooth over my lack of being Dad, I got her ready for bed & took her outside to the hammock swing. That’s OUR thing, & I knew it would blissfully send her off to dreamland. It did. But in the 20 or so minutes between when she giggled as I kicked off the ground to push us higher & higher and when I watched her eyelids bat heavily shut & felt her body sink trustingly into mine to the rhythm of the creaking cotton fibers, she asked a few times for “blanket?” which is also a new word. And I thought for a moment about the words that I DO receive. “Blanket?” “Comb hair?” We believe Lydia is a gestalt language processor, & these are her ways of asking for comfort, or “Will you snuggle me? Be with me?” I thought some more & realized that I was the first person she asked “eat?” & “stuck” & “help, please.” And of course her favorite 100x a day, “show?” 😅 I was the first person who encouraged her to sing when she was too shy to try, & I am the one who knows what every noise she makes really means—pain, fear, joy, impatience. I am the bringer of things, the solver of problems, the wiper of tears, the interpreter, the anticipator, the rock. I am the one who has always been there & who, she assumes, always will be. Perhaps this is why I have “no name.”

I am a presence; an understanding.

I AM Mom.

What a statement, without any words at all. 💛

Growing Up

Once in your life, you graduate sixth grade!! 👨‍🎓💛 It’s been so fun to watch this little man coming into his own the last couple years. He’s faced challenges, but he weathers them with a good attitude and hard work. I am so proud of who he is becoming. Some highlights of his elementary career were discovering his love for choir (his concerts were highly anticipated by all of us), participating in student council (including adventures selling tickets in the frigid rain with friends), and this last week he was given an award for overall excellence. Each of his teachers has been amazing and has helped to bring out the best in him and we’re so grateful. Teachers are heroes!!! On to junior high?!!!!

Summer Planning

Just two boys getting ready for summer adventures ☀️😃
School gets out soon and I have yet to engage in my annual panic prep over how we’re going to keep ourselves busy. I just haven’t had time or energy this month to think about it! So far the oldest is signed up with a friend to do a STEM chemistry & cooking class which will be 👌🏻 just the thing for him, but other than that… the summer is stretching out like a big question mark on its side full of nothing 😬 Which isn’t necessarily bad… I’m all for letting the kids entertain themselves & organically fall into fun “the summer of…” activities; but I also like to have some backup helps so it doesn’t all dissolve into the summer of arguing and driving Mom bananas because we’re bored… ya know? 😉 THIS IS ALL TO SAY: What are some of your favorite easy summer go-to activities to have on hand?
Some of ours have been a backyard slip-n-slide, kiwi co subscription crates (my boys love the engineering ones), random craft projects (legos, perler beads, boondoggle, & knitting have been popular), & puzzles have surprisingly taken off recently. Dan asked for a corn hole set for Father’s Day so maybe this will be the Summer of Corn Hole tournaments 🤷🏼‍♀️ Share your ideas and let’s save all the moms 🤣

Lydia's Dance Part 3

When we got home from rehearsal I wasn’t feeling brave or optimistic or resourceful; I had a migraine and a brain block. Was it even worth going to the recital? Would we ruin it for the other 2 dancers in her class? Should we just cut our losses and run away from dance forever? My least mature self was screaming, “Please, yes!” But recognizing that support was the issue, I started grasping at straws. We could bring her noise-canceling headphones. I could remain on stage with… her…? It all seemed so ridiculously impossible. My head began hurting more. I drove home, put Lydia in her room and slept for an hour.
 
When I woke up it was time to get ready. Unsure of what else to do, I got us ready. I curled Lydia’s hair. Having run the aide idea by her teacher, I dressed myself in black. I wondered if I could even ask Lydia to get on stage again—if she would even be able to try. I decided that if she panicked too much, I wouldn’t make her. We’d literally take it one moment at a time.
 
We went to the jr high. Lydia was nervous when we entered the auditorium, but she calmed down as we settled into our seats. The lights dimmed & a video presentation began. The theme of the recital was “Maybe” & the video was about how we all have unlimited potential; within each of us is a unique light that is meant to be cultivated. As we try new things it will be hard, & we may fail sometimes, but there is so much to learn in the process, & we can be lights even in the darkness. My eyes filled w/ tears as I considered Lydia & her little light & what she might teach us all by showing up on that stage, tonight. I decided to let her shine.

And… she did. She got up there. Against all odds. Backstage behind the curtain she whimpered but I reassured her, “Mama’s coming!” and bless her precious trust, she came with me. She stood on her mark. She did not run. She did not even have to hold my hand and let me stand several feet behind. She stood, by herself, bravely, next to her friends. She did exactly ONE step of her dance. 😂🤩But if you knew, if you REALLY knew what a miracle that was for her, just to show up, my gosh how you would have cheered!!!
 
In all her public school performances this year, never once has she stood. Never once has she been without an aide inches from her side. Never once has she been on a darkened stage under the lights with an entire audience clapping along to the beat, and FACED IT.

Yes, I was up there for support, and I’m glad I was, because she knows I’m there for her. And I hope she also knows that she can do it. I think she does. She was not petrified this time—I saw the curiosity kick in as she looked at her classmates and watched them. When we stepped off stage she didn’t cling to me like before. And after the recital she was high on all the performance endorphins just like any other kid after any other high energy event when they are so proud of themselves.
 
It just takes a little extra time. A little extra creativity. A little extra support. But we get there.
 
As soon as we were off stage, her teacher, having seen every step of the drama, praised her to the skies. Because she gets it. It’s not about getting every step right here—it’s about the miles each child comes on their own journey. And my gosh, Lydia came MILES. And her sweet teacher, who walked every step with us, looked me in the eye, this mother who was ready to run away in despair, & said emphatically, “She has a place here.” And that plus Lydie’s one step was all the dance recital success in the world to me.

Lydia's Dance Part 2

On the day of the recital, I was nervous. We had dress rehearsal in the early afternoon, w/ the recital 3 hours later. I got Lydia all dressed up in her costume, which she adored—sequins head to toe, & we took off for the jr. high.

Many individuals w/ Down Syndrome would be performing that day, but only one daughter of mine. It’s important to note, because people often forget, that not all individuals w/ DS are the same. While there’s no such thing as “more” or “less” DS, individuals may have different degrees of disability, different sensory needs, or different associated diagnoses cooccurring w/ their extra chromosome. All of this leads to a wide spectrum of the DS experience. Each individual is very unique & often needs their own adaptations in order to successfully participate in activities.

Lydia struggles w/ new environments. It takes her several exposures to become comfortable in a new space. Our son had a choir concert at the jr. high the night before her dance recital, & knowing Lydie like we do, we took her up on stage after his performance so that she could get that perspective & start getting used to it. I thought this would help her be prepared going into the dress rehearsal. It was nowhere close to enough.

The dress rehearsal was a disaster, putting it mildly. Lyds was terrified of the stage. She didn’t want to be up there & she certainly didn’t want to be abandoned & left standing alone w/ only her little teammates. The amplified sound system was terrifying to her. The lights I’m sure were disorienting. She refused to leave my side & tried to flee the stage multiple times. While other teams ran their numbers multiple times, our little ones were only permitted one run-through. I tried to dance next to Lydia & encourage her to do the steps she had practiced so hard & loved to do. To no avail. When the music ended & as I waited to see if we would be able to run it again, Lydia found the stage steps on her own, & literally fled up the aisle, past rows of seats, past aisles, past the complicated exit at the back of the auditorium, & did not stop, ignoring my calls, until she reached the doors at the back of the school where I finally caught up to her.

Lydia's Dance Part 1

We were driving home from the Hope of America performance, a big celebration where hundreds of 5th graders from many schools combine to sing songs in a patriotic program. My middle son had just performed and spirits were running high. In a brief lull in the conversation, my oldest, looking forward to the next Big Thing on our agenda, asked: Mom, do you think Lydia will be able to do her dance performance?

I paused. I knew what he meant. Lydia has been in dance since January. I suppose most parents sign their kids up for dance or any activity hoping they will learn the activity 😅 But that’s not our life around here, and those weren’t my main goals for dance. I wanted Lydia to have more positive, playful interactions with peers. I wanted her to have opportunities to learn to follow instructions. And dance as physical therapy—improving balance and coordination, etc was also on the list.

Her first week in dance was hard. She sat intimidated on a mat in the back of the room. But over the weeks she warmed up and participated in all the activities. She got into the routines and got better at imitation. She is naturally so timid; probably due in part to being introduced to a world that was harsh and scary and violent to her right off the bat 😞 But her heart wants to fly and loves beautiful things and by surrounding her with brave tenacious friends, I watched her watch them, and I watched her start to crack open.

Memorizing a whole dance was a challenge for her, and we practiced hard in class and at home. And like so many things in this life, we had no idea how it would go in the moment. Did she know the dance? Yes. Would she pull it out? 🤷🏼‍♀️

But, as I told my son, “You know, with Lydia, it’s not really about Performances; it’s about Experiences. It’s more like, ‘You learned something! You tried something new! Good job!’” We applaud all 👏🏻 along 👏🏻 the 👏🏻 way. 👏🏻

I love that she teaches us things like this—that our worth and our lives are made up of so much more than single evaluative moments. We are infinitely more than final scores and loving each other through the whole process is what matters.