Spinning

Let me tell you about the medical mom spiral. Lydia’s birthday is coming up, which means that blessed time of year when I get together with her many therapists and teachers in a meeting called an IEP and we assess her progress and needs and set individualized developmental goals. It can be a painful process of evaluating in specific detail the many “cans” and “can’ts” of her accomplishments. We miss a lot of school, especially in the fall and winter when sickness runs rampant (and this year has been a doozy). So come IEP time, her therapists are always like, “Well, we haven’t seen her for awhile…” and my spiral of doom begins. (Technically I’m always spinning, but this little ceremony seems to accelerate things 🙃) Here’s how it goes:

“We’re not doing enough. She’s not getting nearly enough therapy. She’s falling even MORE behind.
BUT I haven’t been able to send her to school. She’s sick, and it takes at least 3 weeks for her to get over a cold.
BUT I could be doing more therapy at home if I got my act together.
BUT I am so overwhelmed and she needs more help, more skilled therapists, a stronger support team than just me—we both do!
Is this school the right choice for her? Do we have the right therapists, the right diagnoses, the right supports in place?? What do I even look for? I’m the mom, I’m her advocate. I have to figure this out…
She needs MORE therapy.
BUT she’s sick all the time.
She’ll just go at her own pace…
She’s falling behind!!
I’m failing her…”

On and on etc forever and ever amen. Usually ending in me crash purchasing an insane amount of therapy toys online and drowning my broken heart in Netflix until midnight when I curse myself, creep into her room to check her oxygen saturation levels (because she’s sick), say a million prayers that it will be better tomorrow, and fall asleep.

Oh I love you baby girl. We WILL figure it out… someday.

Creative Break

January mood. Portrait & the scene he was looking at. Both taken with the #lensbabyedge35. I’ll split the individual images out in stories, but I really liked the effect of layering them… might even take it into Photoshop & do more of a feathered blend. 🌅

Noticing Light Daily

I’ve started another photography 365. I completed my first one in 2020 with the goal of becoming a more technically skilled photographer but gained so much more out of that project than the goals I set for it. First—2020. 😳 What a year to choose to document and now we have a faithful record of our activities January-December! Priceless. But some of the biggest benefits of my 365 I didn’t realize until I stopping doing it. I began to miss the meditative, conscientious act of looking for LIGHT and MOMENTS, daily. Of capturing my children’s fleeting youth and noting—logging—the incremental changes of their growth, be it in daily routine or the progression of simple things like haircuts and lost to permanent teeth. I realized how much these things matter to me; how fast they go. How much it is part of my mothering process to see them, acknowledge them, honor them… so that when the time comes, we can let them go. But it’s the light hunting—literally & figuratively—that brought me back. I need it, daily. I’m already shocked that HOW I am shooting the same old scenes is not the same old way—perhaps because I’m feeling it differently. Perhaps because of my greater appreciation for my purpose and what I’m looking for. At any rate… 365. It’s back.
#am_twoboys

Piano Practice

Helping 🎶 😁 She loves her music, this one. Whenever any of us sits down at the piano, she likes to add her little duet. It gets chaotic for sure, but the boys are pretty good about shrugging it off and carrying on. I just wish her OTs could see her finger dexterity on full display.

Favorite Spot

We took the tree down last night, but here’s one last tribute to my little ornament thief in her toy box 🥰🎄 #misslydiefaith

Sledding!

Good news! We are crawling out of being sick 🙏🏻🥳 Other good news: The sun is out today!! 🙌🏻🌞

POV: You Just Really Like Your Dad

Goes on a casual walk, beams out joy & love with every step. You can’t fake this kind of genuine, extra chromosome magic. 💗🥹

Christmas Break

Spinning our wheels, and some of us our feet 🩰

Christmas Light Drive

On Christmas Eve, after reading the nativity, we bundled the kids in their Christmas jammies & drove around looking at Christmas lights. Today we went on another Christmas light tour as a bunch of sickies who needed to escape the house for a bit but still couldn’t be around other humans 😷 Lydia sang along to Josh Groban the whole time and you’d have to be a real grinch to not get a smile out of that 😆

Sledding Fun

Nothing beats a fast shutter & sledding pics (as long as my camera and I don’t get hit) 😄🛷 Pictures from last week, playing with cousins.

Little Colds

Everything is in soft focus and splashed with gray… While Christmas Day was wonderful, we caught the flu and have been hunkered down this week trying to heal. The boys seem to be doing the best, and thank heavens Santa brought that foosball table that has kept them alive while their parents have been zombies. Sweet Lydia is fully congested with an awful cough. We’re monitoring her oxygen during the night but so far so good 🙏🏻 Something about these T21 kids—they take pain in stride. I often wonder if it’s because pain has just been part of her life since day one? At any rate, she manages to still be cheerful and overall a much braver sickie than I am 😂🙏🏻 Mom & Dad are hopefully turning the corner. It always takes Lyd’s system longer than the rest of ours, but she’ll get there, too.💪🏻💛

Sibling Love

My heart. 💛 Click through for some joy.

Finding Peace in December

Sharing an old favorite. Looking at my calendar for this week I am completely overwhelmed by all the to-dos and magic making that I’m supposed to be pulling off EACH DAY that somehow avalanched in spite of my best intentions to not get swamped. So many expectations to balance and feelings to manage and heaven help us all to make it through the week. ::circus music:: Trying to tune into this dude’s energy and tap the whole “reason for the season” significance… Being Mom is hard. 😅Maybe that’s why Mary got some advanced warning/fear nots. Peace be unto you, Mamas. 💛

Quiet mood

Watching the snow pile up. ❄️

Cardiology Appointment

Yesterday was Cardiology Day for this girl! We did a full check up: pacemaker & leads, echo, & EKG. These various tests help monitor her internal device (pacemaker) as well as evaluate the electrical patterns, structural functioning, and pressures inside her heart. Everything still looks good! We’re continuously monitoring and adjusting various things to make sure that her long term picture looks as bright as possible. It’s a lot of tests for a four year old to put up with, but Lydie brought her characteristic joy and kept us all laughing. She always helps me keep perspective. 💛 More deets in stories if you’re interested. #misslydiefaith #lydiesheart

As I Have Loved You

My dear friend, Kecia Cox (@lovemakesmiracles_), once wisely told me that extra chromosomes come with extra tear ducts and I can confirm that this is true 🥲💛 As the mother of a child with Down syndrome, I find tears in my eyes so much more often than ever I used to. Today at church was one of those times, and it snuck up on me like it often does. I was watching Lydia and her little class spend time in Primary. We’ve had her in a nursery setting where toddlers play with toys, but she’ll be transitioning to a classroom & singing time setting called Primary at the start of the year, and to help the kids transition they are taking them in for a few minutes each week. I was in there when they brought in Lydie’s class this week and got to see how she did. As a mother I know all her weaknesses… her unease around loud noises; her inability to sit in a chair & pay attention to an instructor; her struggles with social interactions. I worry about how these transitions will go. So I sat in the back of the room nervously watching… And what I saw floored me. It shouldn’t have, but it did. She sat with her aide who patiently & lovingly helped her participate in age-appropriate activities geared to keep children of any ability engaged. I watched leaders interact with her. I watched this sweet peer of hers who has persistently tried to be Lydia’s friend sit by her. And I watched Lydie. She covered her ears for about two seconds as she does when she gets overstimulated, but rather than stay in her hunched over, defensive stance, she sat up, joined the activities, and engaged. She demonstrated curiosity. She appropriately used the props. She grinned from ear to ear. She marched around the room. Out of order but they went with it 😊 She let her little light SHINE. Yeah, I lost it. Because when you live for nearly 5 years in quarantine with your disabled daughter, you THINK inclusion, and you SPEAK inclusion, and you DREAM inclusion, but you don’t very often get to actually LIVE it. But today we did. Religion can sometimes be messy, but as I listened today to songs about Jesus and as I watched others love a special needs daughter like Jesus would I thought: THIS is my religion.💛

On Vulnerability

I’ve been thinking a lot about the sacredness of vulnerability. I’ve always been an all-in, heart on my sleeve type of person. An artistic empath drawn to humanity’s stories & connections. But something about the last few years—the brutality & trauma of it all on both a personal & larger social scale of things has cut to the quick of me & left me asking big questions. This intensity of my heart… this depth of feeling that I’ve always considered my greatest strength… this Thing that makes me who I am & connects me to the world around me—well, it’s quite the double edged sword, isn’t it? Because it turns out that vulnerability isn’t all just poetry & romantic expression of feelings; no, it’s also a surgical central line that allows direct access for substance to flow both FROM and TO the very heart of you—and sometimes what flows IN isn’t always as sterile or compassionate as what you send OUT into the world, is it? Once you choose to install the port of vulnerability & give away access to it, you also open yourself up to certain risks.
Maybe it’s yet another side effect of unexpectedly entering the world of special needs motherhood, but the risks of being vulnerable have never “rung my bell” quite so hard before. Respect many, but trust few. Close down like a clam. Shut up, shield, volunteer no information. Watch, observe, protect. That has been my gut instinct in this post-pandemic world. It’s gutted me; it’s gutted my art. It’s the direct result of trauma & deep moral injury that came from living in a community that didn’t care about protecting its vulnerable from a virus it didn’t believe in. The world has moved on & yet our children’s hospital is currently beyond capacity & mothers like me of high risk children are fatigued physically & emotionally. We have scars. We fall into each other’s DMs exhausted & looking for comfort knowing that’s the only place we’ll find it: “We’re here again? How much longer can we do this?! Hold on. I see you.”
Still, I hope I can open up again someday. I hope I can learn to feel safe again. I hope my compassion & vulnerability find their way back to my sleeve, & I can hold my 💛 out there to receive & to give once more, soon.

Happy Thanksgiving!

Thankful for many things, but most of all for my people—all they teach, all they give, & all they are. Happy Thanksgiving. Whatever it holds for you, sending love from our hearts to yours. 🍁💛

Arches

Just cute Lydia at Arches National Park.