Kindergarten?!

Last night as I was going to bed & imagining what this day would be like, I thought about dropping this girl off at the kindergarten doors and thought ‘There goes my whole world.’ But I realized in an instant that for Lydia, that phrase doesn’t go far enough. When this kid showed up on the scene 5 years ago, she not only became a part of, but obliterated and remade my whole world. In one fell swoop and a million micro & macro lessons thereafter, she changed my life course and my worldview.
.
There goes my moral earthquake.
There goes my paradigm shift.
There goes my life redefined.
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So was it a big deal when my whole universe walked into kindergarten today, complete and utter darling miracle that she is? Yes, it was. And you darn well better believe it when I say, “Look out, this one’s a world-changer!” Because trust me—I know.

Hanging on to Summer

It’s rainy today. The trees look like late summer but the air feels like the road just ahead of the seasonal curve. Windows are open. Might light a candle. Baby starts kindergarten tomorrow. Not thinking about it.

Sunflare

Hot tip: If you edit one vacation pic a day, it almost makes up for the fact that you aren’t on vacation every day.✨

5th Grade

5th grade. I remember a lot about 5th grade. I remember how Whitney & Daniel got “married” one day at recess and afterward the teacher gave us a big lecture about how we weren’t ready for real life decisions like that. I remember earning fake money and having class auctions and how Dustin C made a killing on an old (probably broken) boombox he brought from home. I remember that our class dance that year was to Tim McGraw’s “I Like It, I Love It,” and my teacher had an obsession with making things out of paper mache and for D.A.R.E. Week we made a nine foot monster and put a red ribbon on him and got our pictures in the newspaper. I remember how that same teacher would always fall asleep during class read-alouds and sometimes during my turn I would get stuck reading for pages… I remember 5th grade was the year my feet outgrew my mom’s and I felt super gangly over that, and we had the Maturation Program during which I found out a period was monthly and not just a one-time thing 😳😩 I remember that 5th grade was when I started reading books that pushed me and when I started to find My Things.

Yeah, I remember a lot about 5th grade. 5th grade’s a big deal. And here we are, again.

LIGHT

✨Glowy✨ This is what peace looks like to me. This is where I connect to the Divine, myself, & my family in the purest way. Also there’s no cell service so that probably helps. 😉

#am_nationalparks #mangosdoyosemite

Yosemite and the Divine

“Nowhere will you see the majestic operations of nature more clearly revealed beside the frailest, most gentle and peaceful things. Nearly all the park is a profound solitude. Yet it is full of charming company, full of God's thoughts, a place of peace and safety amid the most exalted grandeur and eager enthusiastic action, a new song, a place of beginnings abounding in first lessons on life, mountain-building, eternal, invincible, unbreakable order; with sermons in stones, storms, trees, flowers, and animals brimful of humanity.” -John Muir, The Yosemite

“Full of God’s thoughts.” YES.

#am_nationalparks #mangosdoyosemite

"Outside!"

My Lydie girl in her element. 🥰 Of all of the places she could be, nature is Lydia’s favorite. “Car” & “outside” were some of her first words—in fact, being outside is where she is the most motivated to learn & try new vocabulary! Here she overcomes her sensory fears and tries new things. Here she finds her peace and zen.

Lydie has no idea that her body has any limitations that may hold her back from enjoying the great outdoors. She doesn’t understand loose ankles & joints or a heart sensitive to changes in elevation. She has no idea that her temperature regulation is different than ours. She just knows that she loves it HERE. THIS is where she wants to be! So we help her make it happen.

In 2020 we used our forced time away from society to take a lot of hikes as a family. This eventually led us to our first family vacation with Lydia in tow: we went to Arches National Park. Since then we have been to 5 National Parks as a family. Family vacations are never easy, and adding a child with a disability to the mix requires extra planning and accommodations. I plan on sharing how we tackle things like mobility, nutrition & medical needs, & overstimulation. The examples I’ll share just apply to one family (ours), but may give you some ideas, or at least a peek into what our lives are like.

We feel like, since 2020, we’ve found our own unique way of doing things & a new family identity that we love. While the routine will no doubt see many necessary changes as things evolve over the years, it’s all 100% worth it for this time together and these grins.

#misslydiefaith #theluckyfew

Revisiting Senior Superlatives

My class voted me “Future OHS Principal”—I don’t know what that means socially, exactly, but I think it might fall somewhere between “Most Recognizable Nerd” & “Biggest Goody-Goody.”

I never became a principal, but we ARE having a reunion. It’s been 20 yrs, & everyone’s submitting life updates on FB ahead of the in-person event. I log on to see what people are saying & to see what the rules are for defining yourself to your peers these days.

It's odd to read life updates from individuals who are frozen in your mind at 18. Consequently their updates read something like overdue “senior superlatives” to me; but we are adults, now, & these are actually our reality show headlines:

Entrepreneur
CFO
Foster parents for troubled youth
World’s best aunt
Dabbled in amateur drag racing
Earned 2 masters degrees, a PhD, traveled the world
Spouse died & had to move closer to family
Recovering addict, years sober
Married, 8 kids
Never been married, no kids
20 years in the Armed Forces
High-risk cancer diagnosis, one year cancer-free
Miscarriages, infertility, child loss

The list goes on.

I remember the details of graduation day clearly—the long, fidgeting line as we each waited for our turn to walk across the stage. But after reading my peers’ life updates, I reimagine that scene:

We are walking across the stage & they’re handing us something, but it isn’t diplomas—it’s Life Cards. “Your future awaits,” Someone in authority decrees (again I realize it’s not me). I look at my cards—white with small, black text:

Married. 3 kids.
BA English Teaching
Daughter with Down Syndrome

Shock.
Ripping my eyes away from The Cards, I look up in panic & recognize that my classmates are experiencing what I am: shock, celebration, wonder, & terror.

Suddenly everyone, EVERYONE is changed.

These faces that I know will confront mountains and valleys and never be the same. My respect for each one deepens beyond classmate camaraderie to something as formative & foundational as the years when we knew each other best.

Here we are, again, each holding our own bits of light and darkness in our hands. And the only thing that matters is what on earth we do with them.

Happy Independence Day!

Happy Fourth! A past fav. May all your fireworks be the brightest & the best! 😆🧨

Mountain Playground

Camping scenes ⛰️😍 We are kicking into full swing summer mode over here… swim lessons, evenings in the canyons, family reunions, friends in town. The days feel like they start to go faster and faster as we look forward to the next fun thing and I simultaneously want it all to slow down & last forever… My favorite time of year. ☀️

Happy Hike

Bryce Canyon turns 100 this year! I’ve been going through some of our pictures from our trip last year to celebrate 🎉 National Parks in general give our family that kick up your heels (heals?) sort of feeling 😄✨
#am_nationalparks #mangosdobryce

One Thing

Yesterday I left an examination room with my daughter feeling unseen, disrespected and discouraged. After sharing that experience with you, so many reached out to say “I get it,” “I’ve been there,” or “Keep fighting!” Your encouragement, empathy, and witness of our struggle brought tears to my eyes more than once. Thank you for seeing us.
This experience has underscored for me, again, the need we have to meet people where they are. It’s not enough to offer services once x, y, or z criteria are met. It’s not enough to provide, as one articulate friend put it yesterday, “placebo solutions” and kick the can down the road until the next appointment. It’s not enough to abandon parents to themselves to play doctor/therapist/teacher/caregiver/researcher/coordinator. IT’S NOT ENOUGH.
Meet the children where they are TODAY. Do not abandon them or offload their care to someone else because I’m telling you—there IS no one else. I know—I’m Mom and I’m currently wearing all the hats and I can tell you, it’s not working! And according to my inbox full of DMs, Lydia and I are not a one-off case. 💔 So let’s all throw those placebos in the trash where they belong and get some real solutions on the table—today. Let’s each ask ourselves, what is one way that I can meet this child WHERE THEY ARE, today. Because that’s what they really need. Maybe we can’t solve all of the problems. Maybe looking at the whole picture is too overwhelming. Trust me, I get it. But there’s always ONE TANGIBLE THING that can be done TODAY. That’s how we live over here. In baby steps and puzzle pieces. Can you imagine if I had a whole society on board contributing their one puzzle piece a day at a time? How much fuller and brighter and more complete would this girl’s future be?
One thing, where she is, today.

Throwback

Throwback to a little Lydie squish 🥹

Perspective

You are not hidden
There's never been a moment
You were forgotten
You are not hopeless
Though you have been broken
Your innocence stolen
I hear you whisper underneath your breath
I hear your SOS, your SOS
I will send out an army to find you
In the middle of the darkest night
It's true, I will rescue you

“Rescue” - Lauren Daigle

***

I attended a funeral this week and simultaneously saw people I haven’t seen in 10-20 years. That’s enough to make you think about all the things that fill a life.

Since I’ve seen many of those individuals, my life has changed, turned inside out, been completely and utterly rearranged, reformed, renewed. The funeral was not about me of course, but you take time to catch up. Some were aware of my family’s biggest life events. Some were not. Some mentioned them. Some did not.
It is the same with me and their worlds.

It’s been a week of turmoil & rolling panic attacks.
Of needing to sit down, prop myself up, be near a fan.

We went to the mountains, and I brought my heavy thoughts. My buckets of emotions. The same me I’ve always been. 🎒

At one point, near a grove of aspens, the wind kicked up. My dad calls aspens “quakies.” The sound of a breeze in their leaves is one of my favorite sounds on earth. I realized that for all my watch was registering a workout, this was the first time my lungs had tasted real oxygen all week.

And I wondered:

How many thousands or millions of times in life
do you lose your breath,
Only to have God give it back?

Communication

This morning I was getting ready when Lydie came in. She greeted me like she always does—not so much with words, as with an effusion, an explosion, of happy sound; arms to the side, eyes lifted and sparkling, grinning widely. The interpretation was obvious: “I am here, Mom! With you!”
I was in the middle of doing my hair, which is Lydia’s FAVORITE thing (doing mine, not hers 😆). “Hair,” she said knowingly, “hair.” “Yes, hair,” I replied, before taking her braids out and handing her a brush so she could play along. This is serious business. She watches my every move. Walks in semi circles around my legs by the counter. “Songs?” I ask, per the routine. Today it’s Adele. The set list is five songs long, and we’ve been practicing. I sing along to “To Make You Feel My Love,” then “Set Fire to the Rain.” She sings, too, sometimes with words, always with feeling. Her mood changes appropriately with each song. As we go, I’m pointing out words she knows, though I don’t have to—she’s already ahead of me. During Hello, she interrupts. “Outside?” she asks. I’m confused until the next lyric comes along: “Hello from the outside.” Of course.
Sometimes the songs are interrupted by my blow dryer. She is both terrified and intrigued. Hairspray is marvelously fun. But the crowning event, friends, is the final hair flip, when I turn upside down & fluff the whole mop for added body. Lydie comes running and giggling to run her fingers through my thousand golden strings, laughing and saying “soft… soft” which is not a compliment, but rather a reminder to herself not to get carried away with her joy 😂
Righting myself, I tame the bush into place and tell her we are all done, speaking and simultaneously motioning in ASL. She is disappointed—she could do this all day. I am sad to leave this moment of girlish togetherness, but know that we will be back to our spots, singing our songs, some with words and some without, tomorrow.

Two Months Later

Expansive 🏔️ The snow is slowly melting off those mountains. The grass and trees have both greened up. We’re ready to take these hikes to the hills.