It is January. Driving to school I notice the sun has turned the mountains pink. Lydia cheers, “Wheee!” as we turn sharply left into the elementary school parking lot. I park & open her door to get her out of her car seat. She flaps her hands & grins in a burst of enthusiasm. “Oh! Excited!” I laugh. “Excited!” She repeats. We put on her backpack & I walk her across the crosswalk where her aide is waiting on the other side. Halfway there, Lydia spots this woman she loves, points, and her face erupts into her triple-sized grin. “Hey, you!” her aide responds, smiling & holding out her arms to welcome my girl. “Oh to be greeted like that every day,” I think, “Oh to be loved by Lydia.”
It is noon, now, & I am filling out a formal autism assessment; part of the intake process for ABA therapy. The assessment is separated into 12 parts & I have been told to schedule 2 hours to complete it. I have completed this particular form before, & many like it, & find the process agonizing. I scroll through page after page growing increasingly demoralized.
“Does your child tell you about their day?”
Usually / Sometimes / Never
Can they button their clothes?
Feed themselves?
Understand the concept of money?
Stay safe around streets?
Express their needs in sentences?
Plan parties?
Play pretend with friends?
Usually? Sometimes? Never?
I am crying, now.
It is 2 pm. School is almost out. I am waiting in the pickup line. I cross the sidewalk & there’s a tiny face in a giant coat; a little form 1/2 the size of every other child, turned & waiting just for me. She smiles & grabs my hand and we cross back to the car where I put her in her car seat & she grins as I hand her a favorite toy which she greets by name. “I missed you!” I tell her. “Did you have a good day?” She doesn’t answer in words, but her body language tells me everything I need to know. They love her here. They see her here.
Yes, there are goals & we quantify things, but those who know Lydia & anyone like her understand that we are so much more than numbers on a chart. Than answers A B or C on a test. We are love & light & personalities & experiences all rolled into one. Not never or sometimes, but always. Always.
New Year's Eve Poem
Happy NYE. Happy the end of one chapter, beginning of another. Happy warm shower after a long, dirty job. Opening the window or door after the busy house party got too warm. Cresting the last peak on a long hike, lungs full of crisp air and eyes open to an uninterrupted view. Happy celebration with your arms above your head, leis around your neck, and friends cheering all around. Happy squeeze of lemon in your ice water. Happy sharp laugh over the unexpected. Flock of birds bursting from the trees to synchronized murmuration. Happy bandaids and moleskin and ice packs and collapse after giving it all. Time card punched for the last time. Last glowing light of day. Happy fresh determination, new journal, new class, new home, new plan. Happy trip to the library; checkouts, returns. Happy knowing glance and arms of a trusted friend. Happy breath of stillness. Happy rest. Happy, happy, happy beating heart.
Surrender
Christmas holds a lot of messages, but the one that has been pressing itself on my heart this year is: surrender.
Holidays & celebrations are HARD for my autistic daughter.
I’ve pondered on what inclusion should look like for her in these situations. Does it mean adapting a role in the nativity to a child who wanders on stage, or who dresses like a dragon, as occurred in our beautiful church pageant this year 😁 Absolutely. Does it mean sensory-friendly activities where overstimulating lights & sounds are toned down so that those w/ sensory issues feel more comfortable? Yes! Does it mean providing quiet rooms & sound-canceling headphones at events? Three cheers!!Does it mean the white elephant isn’t so much surprise as a pre-arranged safe toy chosen & delivered in safe wrapping with appropriate expectations? Yep.
These are all accommodations that we have either made or been offered this year. And we needed them. 🙏🏻
But… what if… after it all… it still isn’t “enough” and disability still carries the day? What THEN?
What. Then. The great weight on my heart. Because so many place value on Christmas & traditions & togetherness & celebration. But disability doesn’t get to choose. Every event we attend I find myself trying to balance the love we receive w/ the love I need to give. And thus we come to it: surrender.
Sometimes inclusion means letting go. Actually, I would say that ALWAYS inclusion means letting go—letting go of your idea & plan of the way it was “supposed” to be under typical/ideal circumstances. That’s the whole point. Inclusion is prioritizing the needs of an individual & adapting accordingly. Sometimes that means creative participation. And sometimes, it means no participation, or absence, & accepting that as an appropriate choice. (CHOICE.) Letting go, completely, of YOU, & surrendering to the need at hand. It’s hard; harder than I’d like to admit sometimes. Especially during emotional times like celebrations, holidays, & Christmas. But so necessary.
Long ago, a mother was given a situation she didn’t ask for & replied, “Be it unto me according to Thy word.” Her Son grew up to do His Father’s will & change eternity.
Surrender.
Reading Palms
The other day she reached out to hold my hand and I looked down at her open palm—the single crease across her palm grinning up at me. Most of us have multiple lines cross-crossing our palms, but it’s an attribute of Down syndrome to have just one. That crease is commonly known by a derisive name: simian crease, after monkeys; also a slur applied to racial & ethnic minority groups, and my daughter. Commonly—in medical rooms like it’s nothing. On diagrams. In textbooks. “You see it? The s—crease?”
Those are the terms mothers are introduced to when presented with their beautiful babies. The “signs.” I was. “Do you see?” Instant fear and loathing of the differences. It’s taught. It takes years to overcome.
Fast forward.
It’s been a heck of a two weeks. My girl went through her first pacemaker replacement surgery. If she lives to be sixty, we’ll go through 10 of these things. Heart moms try to take one day at a time and never look too far ahead—because it’s a lot. But every once in a while you catch a glimpse.
The surgery went perfectly. 🙏🏻 And so our clock begins again. Following her surgery, we had a week of severe allergic reaction to some of the topical medication they had applied to her, and that was a sad ordeal, but we came through it, and now my girl is doing great—healing well and back to her fully-animated self. 💛
You never take it for granted. You never forget. All the times we’ve hung by a thread. All the times we’ve fought for her—inside the hospital & out. I’ve enjoyed 2 1/2 weeks of having her home through this—listening to her play, listening to her sing, welcoming her bursts into my room… Everything is sweeter juxtaposed as it often is with the hard.
So when she took my hand, and I looked down and saw that beautiful warm flesh crossed with its one line of destiny, my heart swelled. Because six years later I know so much more. I know what is real and true and good. I know what “fortune” really means. No ugly prejudice fills my mind, now. I saw her palm, sweet symbol of personality and life, took her hand, and said, “You’re here!! Thank you for still being HERE! You are a gift. And we have so much more to learn on this journey. Lead on.”
Lessons
This is what I know about telling the truth:
• It can make us uncomfortable.
• Few are willing to do it openly themselves, but many are grateful when someone else does it.
• It’s necessary and messy.
***
When I was very young, I was briefly exposed to a certain mother of a disabled individual, and I thought, in not so many words, “What a fierce, angry, difficult woman. Bad.”
Decades later, I became the mother of a disabled individual, and I remembered that woman, and I thought, “What a fierce, overburdened, exhausted, dedicated, struggling, faithful, fearless, visionary woman. I owe her.”
***
Life is a circle. 🔄
Given enough time, life comes for all of us, with exactly the right lessons and paradigm shifts we need.
Life is also a line. ➡️
We need every kind of advocate.
I often wish I were a different kind. I often wish I weren’t any kind. I am still learning how to be MY kind.
Life is a trajectory ↗️; a mystery, a wonder, and a growing experience. I’m just trying to stay open to it and honest about it.
We Take Turns
We mostly just take turns teaching each other how to see.
On Healing
When I was 21 I was in a serious car accident. My car was totaled & I was extremely traumatized, but physically all I walked away with were some stitches in my left arm from where the driver’s side window shattered. For weeks I observed as the twin wounds of my psyche & my arm healed in tandem.
Emotionally I could not drive for several days; although eventually my mom wisely coaxed me back into the driver’s seat & I tentatively ventured out onto the roads, again. I never approached intersections the same (the accident occurred in an intersection), & I drove much more cautiously & defensively, because I knew now, firsthand, the terrifying risks. Almost twenty years later, I still drive cautiously, & I have been triggered more than once by “close calls,” instantly transported back to that terrifying experience I had as a young driver.
Physically, my arm healed quickly. The skin closed & the stitches came out in a week. The scar, however, was unusual. It remained raised & red. Occasionally one end would swell & become irritated, as if something were trapped just under the surface—perhaps a stray piece of glass embedded in the skin initially unnoticed & now stuck there. This lasted for several years until finally, inexplicably, it went away. Perhaps whatever it was finally worked itself out into the light & the scar was finally able to heal, years later, flat & white.
It takes time.
It takes longer than you think.
To experience. To process. To let it out. To recover. To regain your footing.
It takes real time. In a world that doesn’t like to spend much time on anything. And certainly doesn’t teach us to sit with the uncomfortable things patiently. But I’ve found that’s what you’ve got to do. Healing bodies, healing hearts, healing minds, healing habits, healing souls. It all takes time. Walk gently. I have to remind myself of that frequently: It takes time. Keep walking gently.
A Heart Warrior Update
She is always beautiful, but today she is exceptionally beautiful.
As she ran into my room this morning & jabbered at my bedside.
As she grabbed my arm during breakfast & laid her head on it.
As I combed her strawberry hair into braids.
As she called “Bye! Love you!” as she always does every time she shuts a door in the house.
Even when she shut the cat in the pantry this morning 😆
So exquisitely beautiful I can hardly take it in.
The tears fall.
It’s been a rough week. Next week gets tougher. My mind recalls the lyrics of a religious song I can’t remember save one whispering line, “How much can one heart take?”
My most divine gift, this animated work of joy, returns to the hospital next week. For she who is so close to God is paradoxically critically mortal.
She has 3 months left.
My darling, PERFECT, vivacious girl. Without intervention, could not be. The reality of it shocks me still.
During her first heart surgery, when she was just five months old, things went wrong. It was more complicated than expected. We drew the 3% odds—her heart’s electrical system was disrupted requiring a 2nd surgery & a pacemaker.
We almost lost her multiple times during that hospital stay. I cannot revisit those memories without severe psychological & physical distress. They have shadowed me these last weeks.
Because time has run out. Pacemakers are like clocks; they don’t run forever. And since they gave her one I have been counting—counting. Counting & praying & begging for more time.
But here we are, and the thing must be faced. My demons must be stilled so the clock can start again. And I will give ANYTHING for the miracle of the continued ticking of that clock.
My beautiful, beautiful girl.
Pray it goes smoothly. It should. It’s not open heart (device only; not leads). Don’t come see me in the waiting room because my PTSD can’t handle it. 🙏🏻 Just pray. 💗
These are the moments that put life in perspective. It’s why she was sent to me—her greatest gift. My beautiful, greatest gift.
Will keep you updated.
#misslydiefaith #lydiesheart
Some Inclusion Thoughts
Today is the last day of Down syndrome awareness month. It’s also Halloween, which seems like an odd day for advocacy, but holidays are a day when differences make themselves felt, so my heart is feeling tender, today. We’re six & a half years into this & our family has learned so much. Changed & grown so much. Our hearts are bigger & softer & reoriented. As I attended Lydia’s class party today & met & interacted with a dozen disabled classmates, I was just so grateful that I get to be surrounded by these people & their families & their aides—there is no better world than an inclusive world where people SEE each other, value each individual, & go out of their way to show love & respect.
But that’s not the norm. Not every space is made to accommodate these kiddos. We live life, more often than not, in the corners. Trying not to interrupt. Trying to fit in the best we can. I wish with all my heart that instead of me always trying to bring my daughter to the world, the world would exert more effort in trying to bring itself to my daughter. I wish people would take the initiative to LEARN from *reliable sources* what autism is, what Down Syndrome is, & what disability is. I wish they would look up the Instagram accounts, check out the library books, & approach the disabled people in their neighborhoods. It’s always amazing to me to listen to who people talk to in our family & how—do they talk to me, or to Lydia? Do they use baby talk & demand her attention over & over? Or do they speak to her respectfully & trust that she hears them & will answer (or not) in her own time? Are they in this interaction for THEM or for HER? Is she just ignored? (More often than not, yes.)
I’m grateful for those who don’t push. Who invite us to things, but understand if we bring headphones or have to leave early. I’m grateful for those who explain to kids that Lydia may not speak/interact the same, but is interested in many of the same things, she’s kind, & loves it when we say hi & are friends with her. I’m grateful for those who offer to help a mom who is barely hanging on. I’m grateful for those who know my daughter is a blessing, not a burden. Who have eyes to see. Who INCLUDE.
Truth and Dare
It seems to me that I waste so much time trying to convince the world you aren’t broken...
That there’s nothing here to be afraid of...
Nothing to cure...
Nothing to shield other children from or avoid.
That this life and this perspective you bring is so pure & magical & GOOD if only they would lean into it and try.
I dare them to try.
Fall in the Rocky Mountains
Another collection of autumn hike photos. Fall heals things. So do trees. So does hiking. So do my people. And I’ve discovered that filtered light hitting golden aspen leaves… aspen leaves set against dark pines like sparkling glitter… aspen leaves falling like confetti… a forest of white trunks & round coin leaves against a bright blue sky… these are a few of my favorite nature poems of this season and this place. ✨
Siblings of the Disabled
These are my boys who I love to the moon 🥰 Dan & I were having a discussion about core values on a date last night, as well as the experiences that shape them. It will come as no surprise that Lydia’s birth was a seismic shift in our family. One of the great core values that her coming instilled in us is inclusion. Inclusion is an action-value. It’s related to divine worth—the belief that every life is sacred and has value; but it’s more than that. Inclusion is the active practice of creativity and sometimes sacrifice to make sure that everyone holds a place of safety, belonging, and equality in any given social structure. (At least that’s my working definition 😉) And nobody knows more about the highs and lows of inclusion, nor feels it so deeply in their hearts than the siblings & parents of disabled/minority individuals.
So I just want to shout out my boys, who in so many ways are actually men, for the ways they have learned to compromise, sacrifice, carry, serve, and truly love because of their sister. They’ve had to say no to things; they’ve heard the disabled disparaged. They’ve experienced fear & anxiety over situations many don’t have to consider. We fight for ways to lift their burdens & honor their childhood but it’s been a unique one.
Along with the hard, they’ve also learned to see; to appreciate differences and know how to respect them. They know how to roll with the punches and compromise, even when it’s really hard. They understand how to make room and WHY we make room. They know that the root of ALL these things is the most important core value of all: Love.
They may be young. They may be obsessed with sticks. They may talk nonsense 85% of the time. But these brothers have some of the best hearts I know, and they live inclusion. 💛💛💛
Mental Health Matters
When Lydia was about a year old and while she was still on oxygen for her heart and sleeping in our room, I would wake up several times a night to put the nasal cannula back in her little nose and quiet alarms. I was getting very little sleep and my stress levels were very high. It was winter, and she had barely made it through a terrifying RSV episode (even after getting shots that cost $1000 a month and were supposed to protect her). We had just bought our house and were living on a shoestring while I was trying desperately to scrape together some semblance of stability for my two little boys. I noticed that I had started grinding my teeth at night, so I went to the dentist to ask for a mouthguard. As I sat in his chair after making my request, the cheerful old man said, “Now what do you have to be so stressed about? We all have stress and most of it is just in our heads. Let me tell you a story.” He proceeded to tell me that once he thought he had a brain tumor, and he was really worried about it for several days, but then he got it checked out, and it was nothing! See! Stress is like that!
I am not usually a very outspoken person unless pushed to the brink, but I looked that man in the eye, and said calmly, “Would you like to know what I’ve been dealing with?” 👀 And I told him. I told him I had just had a daughter diagnosed with DS at birth who had then needed 2 open heart surgeries… and I didn’t—couldn’t even BEGIN to touch the rest of it—but that was enough.
“I don’t know what I would do in that situation,” he said, before agreeing to size my mouthguard.
And friends, I haven’t been to the dentist, since 🤣
This is all to say… when someone says they are stressed… BELIEVE THEM.
Also, set your boundaries. People don’t know what they don’t know. If it’s too hard, it’s too hard. Period. You deserve respect.
August - Autism diagnosis
September- New school, evaluations, & new therapies
October- Other life joys
November- Pacemaker surgery
This life is a marathon, not a sprint. And I’ve learned you have to have a really good team, and the number one player you gotta take care of… is you.
Happy World Mental Health Day 🫶🏻🫶🏻🫶🏻
Down Syndrome Awareness Month 2024
Happy Down Syndrome Awareness Month! 💛🩵 I had a beautiful experience at Lydia’s new school that I wanted to share.
Early this year, Lydia’s teacher approached me & asked if I would be on board if they started teaching her to read. Um, of course!!! This is one of my biggest dreams for her! I gave her teacher an emphatic “Yes!” and she replied, “She’s such a smart little thing.”
My heart & brain exploded at the same time. I KNOW my Lydia is smart—I’ve known it for a long time. I know that she understands a lot more than she is able to communicate back (receptive v expressive language). One of my main motivations for pursuing her autism diagnosis was this sense that her mind is a locked box—there’s so much in there, a veritable treasure box!, but we haven’t quite found the right key, yet. I was very worried when we enrolled her in her school class where they described students who “didn’t know their ABCs or how to count” because Lydia DOES know those things… it’s just getting her to perform them that’s the problem 🥴 (also, I don’t think that limited analysis of all these kids’ abilities is fair… but anyway…). So here comes this teacher in a situation that is totally new to us who essentially says, “Yep, I see it, too. She’s got some challenges, but this girl’s got potential. Let’s chase it.” And my unsuspecting heart—which has never heard those words about my girl before, though it believes them with all it’s got—absolutely hits the moon.
But my brain starts fighting back. Lydia can barely speak! She’s only got a few words in her vocabulary that she uses proactively. Can reading come before speech? Concurrent w/ speech? How? Clearly I have so much to learn… because the answer appears to be YES.
Again, there’s A LOT going on in that little brain.
I’ve been getting daily notes from her teacher 😇🥰 and Lydia’s progress has been stunning. Today’s note read: “Lydia worked on reading with me. She did amazing! She was very close to passing off the story. For comprehension questions about the story we are just asking simple who, what, where, and why questions.”
So there you have it. WE ARE LEARNING TO READ. Set no limits. Find your people & reach for the stars. ✨
Staycation Fall Break
The kids were out of school on Friday, so we spent the whole long weekend leaf peeping across northern Utah. We drove the Alpine Loop, hiked around a lake up in Cache Valley/Logan area, then hiked around some more lakes in the Uintahs. The boys will tell you it was too much car time since Mom banned the iPad halfway through (because of the bickering) but when pressed they MIGHT also confess they liked seeing new places, eating junk food, listening to things & singing songs in the car, “feeling peace” by the water, acting as creative directors for Mom’s pictures, and eating their fav foods at a diner. But only if you twist their arms. 😉 Dan & I love a good car ride (minus the fighting) and the golden aspens & pines were on point👌🏻 Enter, fall.
Aspens
Celebrating trees season 🍁
Untraditional Family Pictures
🍁A fall afternoon 🍂 This will be the 3rd year we haven’t scheduled family photos. I just can’t do it. And I, a family photographer, BELIEVE in family photos. But for right now, for this family, it’s just too much. There’s all the normal stuff… the coordinating outfits, getting everyone ready, finding & scheduling a photographer I like, the travel & expense. The hyping the kids up for it. The hyping me up for it, “I can do this! These are the only pictures I’m actually in!!!” But then, there’s the extra. With our life there’s always so much extra. In any given photo circus everyone ends up overstimulated and crazy by the end. We’ve alllllll been there. But you throw a neurodivergent in the mix—a kid who is unable to process the extra stimulation—truly unable to roll with it; unable to deal with a stranger yelling their name (heck, won’t always look when I say her name) and couldn’t care less about treats or toys or any bribe you got because the only language we speak is “GET ME OUTTA HERE AND BACK TO MY SAFE ROOM, PEOPLE!!!!”
Sigh. It’s rough.
I’ve taken a lot of pictures of kids with special needs and here’s what I know: you can’t rush it. You can’t be loud or crazy. You can’t always act silly or make weird noises. You can never ever expect or demand a smile. We ain’t gonna mini session our way outta this first meet ‘n greet, honey.
There has to be trust. And someone who REALLY knows what they’re doing. And I’m not just talking about the camera. And I’m sure as heck not talking about posing. My gosh NEVER POSE.
I once had a professional photographer try to take pictures of Lydia and I had the misfortune of being there. They were trying to whip a whole bunch of kiddos through in five minutes: “You smile, now you smile, now you smile,” click click click. We burned the place down. My heart burned with it. Because my girl, she needs a little more than five minutes to give you her real self. To give you anything, actually. Total disaster. Whatcha gonna do?
This is all to say… I can’t do it. The screams & sobs from 3 yrs ago are still echoing in my brain. So this is the stuff you get, peeps. Please remember I was there, too.
Escape
‘Twas a ‘run to the mountains to fill your heart’ kind of weekend 💛
Necessity
Lyds is super motivated by routines. She loves them. Especially when they revolve around transitions. They provide comfort and assurance when she knows exactly what to expect. She’s only particular about following a few routines to the letter (thankfully), and interestingly those ones often involve time outside of the house. Like church. On Sunday she knows when it’s time to leave Mom & Dad & go to class—and she is giddy to do so. And at the end of church she knows when it is time to go home—and she is giddy to do so (honestly, same). The routine after church is I pick her up from class, we wait a hot second for her brothers & Dad, then we all go out to the car. If brothers take too long, there is wrath. Well, last Sunday it was I who took to long 😬 and as I hurried down the hall my tearful girl was already waiting in Daddy’s arms and she burst out, “Mama!!! Mama!!!”
If you’ve been here awhile you know that Lydia NEVER says my name. This was a moment. This was the depth of highly-motivated anxiety 🥹 So I was like “Gosh, I’m sorry I worried you but I don’t hate hearing that!” And it was magical. 💖
Well, good news. Our moment of terror seems to have broken down a wall, because “mama” has been popping up again and again this last week, and not always out of desperation but even out of joy! 😅
She’s six and a half and words are few. I’m her mama and my heart is so happy. 💗
***
Go ahead & ignore all the imperfections in this photo including the fact that I’m in my grubbies & just be happy that I’m in it cuz I’m working on that. 💛
Happy Adventures
Blue on blue on blue on blue. 🩵 So different from the desert colors I am used to shooting. I love nature’s incredible variety. *** I used to be a “Don’t get your clothes wet!” mom. Now I’m a “Go enjoy it” mom. Life has softened me, awe has softened me, even photography has softened me. I guess it doesn’t matter why, so long as the result is appreciation & presence. 🩵
