“V is for VACCINATED!!!”

There aren’t really words for all the emotions I am feeling today, but there are tears! My boys got their first dose. Shots are not easy for kids. One of my sons had a panic attack getting his flu shot last year. This morning that same boy woke up and cheered “Vaccination!” 💛 They were both nervous to get the shot, but faced that fear bravely and with determination. As I thought of all they have sacrificed the last 18 months with Covid, and an additional 24 months of caution before that as their sister went through heart surgery, I couldn’t hold back the tears. These brave boys who have willingly worn masks to school, missed play dates and activities, and faced down their fears of shots, all because they know how important it is to protect their sister & people like her. They are little men in my eyes, and I am SO proud of them. They came up with this “V” thing themselves, and I thought it was appropriate. We’ve had a lot of hard visits at the children’s hospital, but today wasn’t one of them. Grateful to God for miracles and health. 🙏🏻🎉😭💗 (The younger one spontaneously giving his bro a 👍🏻 for support 🥰.)

Eyes to See

On this last day of Down Syndrome Awareness Month, I want to chime in one more time about what a blessing this girl is in our lives. I don’t think I can articulate or even count all the ways she has changed me. Perhaps it’s best illustrated by an example that is hard but I think important to share. When she was brand new & I was deep in shock & despair, I would look at her & mourn several of her features that were markers of Down syndrome. The shape of her eyes; her nose; the back of her head & neck; her little ears. Of course the oxygen tubing (not itself a marker of DS, but evidence of her heart conditions) that created a stir every time we went out in public. Every once in awhile she would make an expression that jumped out at me as very obviously physically emphasizing the attributes of Down syndrome. I was forever worried about what made her different & how others would see her/be critical of her. Over time, however, I fell in love with MY baby—not the one I thought I would get or the preconceived notions of what I thought her life would be like… but my very own, unique, fully-her-own person, Lydia. It changed everything. She was always surrounded by a bubble of divine peace, & I was welcomed into it—learned to savor & lean into it. She had ways of communicating with me with her eyes & her soul that I had never experienced so strongly with my other children. She needed me fiercely—and she trusted me even more—imperfect, broken mommy though I was. She was filled with joy, tease, sass, fight, & love. She was absolutely everything I could ever want my daughter to be, and more. My eyes changed. They actually CHANGED. I found myself seeing pictures of babies on social media, & I struggled to tell whether they had DS or not. Dan experienced the same thing. Somehow, by learning to look past the markers to love the full person, we lost much of our ability to see any markers at all. I don’t know how to describe the experience other than that. We had to LOOK for DS because we had learned that all of those differences that had at first filled us with fear & sorrow weren’t actually indicative of truly significant things, at all. That is the gift.

That is what has changed who I am, the most. This is what has made me a better mother, Christian, and friend: the eyes to SEE and LOVE. God & Lydia shared them with me; their eyes are already perfect. Some of us have to learn to see. I’m so grateful for the ways the gift has opened my eyes, my world, and my heart. It’s been hard, but it has also been incomparably beautiful. I hope that as I share here, the same magic will be worked for you… that your eyes will see fewer differences and more people/souls. It’s been the greatest gift, and one our world desperately needs. 💛

Algorithm Blues

You can get worn out talking to yourself on the internet; making pretty things for no one to see. Shouting your own worth in a school full of fish where nobody has any elbows yet everyone’s trying to fight their way to the top. I don’t know why we do it, and hot dang I wish there were a place to keep community and friendships and creative energies alive without falling prey to the soulless control of AI capitalist tech squads governed by formulas & profits, those robots with no blinking eyes to see an individual’s significance. I used to revel here in new finds—artistic genius on the cusp of recognition but still untouched by hoards of followers and the trampled spirit grass that all crowds bring. Now I scroll through reams of sameness and complicity… and desperate tears. Oh snap, I broke the code again—no video ☑️ & ideal optimism sacrificed to honesty ☑️ It’s a pity she has to run her mouth; she could have really been somebody. Ah well, there’s a hundred others, move along.

#am_nationalparks #mangosdocanyonlands

Time Slip

I feel it so intensely, lately; like water through my fingers that I can’t stop. The growing. The pigtails, the holes in the jeans, the stained T-shirts. The awkward, out of control laughs; the bear hugs around the knees; the bouncing and running everywhere—everywhere. I feel it like the shortness of fall, the steam of a warm shower, the last bite of chocolate cake. Exquisite little worlds that only last a few minutes, a moment. I see it and I want to hold onto it forever, frustrated that I can’t. Whenever one of them holds my hand, lets me wipe their tears, falls asleep in my arms, it resonates like a prayer in my heart. Don’t stop. Don’t stop.

#am_nationalparks #mangosdoarches

Canyonlands Views

Before school started I was apprehensive but excited to have some “me time” back in my life. Well, that hasn’t happened 🤣 Someone has been sick, injured, or on 🦠 exposure notice almost every week. The last three weeks have been exposure alert + fall break + our trip to Moab and it’s basically summer again for all the scheduled productivity going on around here 😬🤷🏼‍♀️ BUT we are all healthy and we’ve been reading Fablehaven together which is absolutely delightful, and as far as I am concerned, everything is right on track. The kids are still on track in school, and learning & growing as good humans. We have found our own sort of healthy groove in this absurd new normal, even if we dance to our own beat. 💛

#am_nationalparks #mangosdocanyonlands

See the Able Not the Lable

“One of the greatest regrets in life is being what others would want you to be, rather than being yourself.” - Shannon Alder
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October is Down syndrome awareness month! A group of photographers have gotten together to share love with the Down syndrome community. We encourage everyone to open your hearts and see the person, not the disability. Let’s celebrate our differences and appreciate how they enrich our world!
#photogsforDS

Learning to Speak

“MOON!!” 😁 Teaching Lydia to speak is one of the most rewarding aspects of our lives. She is incredibly smart and understands so much, but articulating words takes longer. We’ve found a few things that really help. #1 is experiences! Some of her first words were go, hat, car, and shoes because those are words associated with getting out—which she loves! I started teaching her animal sounds, but it wasn’t until we walked down the street to see some sheep that she really embraced and understood the sheep says “Baa!” We had similar experiences with ducks and cats. It’s so fun to watch her brain connect all the dots. #2 We sing all day long! 😆 You would not believe the number of times I have sung Itsy Bitsy Spider, Monkeys on the Bed, or any other kid song I ever learned 😅 And we do actions! Because she typically picks up signs before actual words. Daily time with Super Simple Songs on YouTube & Baby Signing Time are also part of our schedule. Finally, repetition. Every child learns by repetition, but kids with DS require many many many more exposures before they acquire/master a skill. This means that routines and regular phrases are a part of our lives & it’s actually enjoyable! Just recently Lydie’s speech has started to really improve. She tries to sing along to songs (!) and repeats more intelligibly words that we say. The other day I entered her room with a toy and she looked up and exclaimed “‘Olly!!!” (Dolly!) These moments are so fun and make my heart explode. She teaches me to be more intentional, to slow down, to really listen & seek to understand, and to celebrate BIG!! 💛 #misslydiefaith #theluckyfew #downsyndromeawareness

#am_nationalparks #mangosdoarches

Daddy

Happy birthday weekend to one of the best 💛 He’s supportive, funny, smart, good, & can make a friend out of anyone. Thanks for always being up for adventures, genuinely encouraging all my artistic pursuits, making me laugh every day, and being everyone’s favorite. Sorry for the PDA. 😉 We love you.

Moment of Rest

Me for three days after crafting the birthday balloon arch (stories) 😂😂 ***
He just plopped down in the grass all serenely next to me and I thought “Well yes I will take your picture, thank you for holding still!” 😍

Boys

One of my favorite images.

On Awareness

When I took this image 3.5 years ago, I was trying to do something I had never done: document one of my pregnancies at the very end. I had no way of knowing that this might be my last pregnancy. For that reason, and because of the chaos that unfolded just weeks after this was taken, this image is very significant to me. I look at it and don’t really see myself at all… it’s like someone else’s body from a different time…

So much of life is unexpected, laced with questions, and steeped in emotion. A couple of confessions:

Everything associated with pregnancy, birth, and newborns triggers me. It triggers me in a PTSD sort of way, as our last birth experience was very traumatic; but also in a deep, heart-aching way: a longing for something that’s gone missing, an experience I was robbed of, one that I might not get again. It doesn’t mean that I don’t like babies or can’t be happy for other people! I do and I am! But it does mean there’s an ache inside my secret mother heart that may not ever go away.

“Awareness months,” or weeks, or days as the calendar gods choose to define them, also trigger me. Oh how I want & need to celebrate so many things! New perspectives gained, incredible joy & love experienced, even hardships overcome. But to celebrate those things, I have to acknowledge the full picture, including the struggle it was to get here. I have to confront the past all over, and dig into the mess to some extent to celebrate the redemption. And sometimes… that’s too much for me to do. The fact of the matter is, every day feels like an awareness day of some sort in this life, just by living, and some days I’d rather just live in the moment and be grateful and joyful, without the burden of educating society hanging over my head.

I wouldn’t change who we are, what we’ve learned, or all that we’ve gained. Heaven knows the last four years have been the hardest and most expansive of my life—I am forever grateful for all they have taught & given me. But if you can ever relate… if you are also a mom faced with any kind of awareness celebration and sometimes it’s too much to participate every year or all the time… I see you. 💛

Excitement

Burning off energy downtown.

Tree Adventures

To be a boy mom is a truly wonderful thing. (Minus some of the refereeing…) 💛💛 #am_twoboys

Walking Champ

That confidence 😄 Like every three year old, she loves to do things herself! 😆 She has started refusing to hold our hands because she wants to do it! Her mobility has come so far. She’s fearless about walking on different textures and is working on steps and different degrees of incline. Balancing while going uphill is hard! But watching her fall and get back up and celebrate (clap!!) when she makes it is amazing. 💛 And her “running” (walking slightly faster but with enthusiasm!) and giggling are the. best. Love this incredibly determined, ever optimistic child. She is going places! 👏🏻 #misslydiefaith

Joy

There’s a stereotype that people with Down syndrome are always happy, and while I can absolutely tell you that’s not true, I will say that her joy is something else. It’s pure, infectious, transcendent, and an absolute gift in my life. Even when she’s not smiling, she makes my heart happy every. day. 💛 #misslydiefaith

Autumn at the Springs 2021

I had an idea for a new project. It’s kind of a lot, so we’ll see how far it takes me 😬🙃

Pure

I see you playing… outside, without screens or toys, without any other clock but the sun. Without crowds or distractions or hurry; Just your brother, your imagination, and nature. And I think this must be all that I could hope for you, and all that I’ve ever really wanted for myself. Is this what joy and tranquility sound like? Space and breath and growing things? Something to savor and try to recreate, full of uncomplicated truth? Kind of like the day when social media went down?

Down Syndrome Awareness Month 2021

Happy Down Syndrome Awareness month!!! The more experience I have with people with special needs, the more I learn and the more grateful I am for all the light they bring. What a cause to celebrate!
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We have been doing the #extra_exposure project for a whole year!! I love this project so much and am grateful for these talented women and their willingness to share part of their lives. 💛💙