Back to School!

Guess who started school this week?! We fought so hard to be here and I am so proud of her 🥰 Her first couple of days went really well. It filled my heart to see her teacher & therapists welcome her back with love and to watch her walk into that classroom excited as could be 🥹 She’s tried to play a couple games with me that I am pretty sure come from “school!” We did our homework getting medical clearance for the year and while I’m sure we’ll catch more than our fair share of colds because that will always be the way over here, we are cautiously optimistic and hopeful for a good year. She certainly deserves it. 📚👧🏼💛 #misslydiefaith #theluckyfew #prek

Growing Pains

This little one. She’s always trusted me. We’ve been through so much and I’ve always felt that although her words were limited, we could communicate. But lately that bond has really been tested. Her independence & opinions are growing, and the words are having a hard time keeping up. It’s frustrating for her and stressful for us. The days are full of a lot of whining. There are times when she has expectations that I fail to meet; there are times when it’s the reverse. It is an everlasting exercise in patience, and sometimes I just wish we shared enough vocabulary & mutual understanding to agree: try again, tomorrow.

Happy Hiker

Happy adventures. ☺️

Imagination

Fighting with dragons 🐉✨

Silhouette

I got one shot before he moved. 📸

When it rains...

It was supposed to be a planned shoot. There was an assignment; there were props. There was anxiety about expectations & meeting said expectations; especially since my camera has (for many reasons) mostly been collecting dust this summer. But there was also determination and an open evening schedule, so we collected all the necessary equipment, props, & personnel, and headed for a pretty place in the mountains. Halfway there, rain started pouring from a mostly clear sky. Giant rain drops in a sparkling sun shower came so fast little rivulets started racing down the canyon road carrying with them any plans of an organized shoot, as well as the pressure to execute said shoot. We decided to pull over—not wanting to go home yet, but also not keen on getting stuck in a flash flood. We turned off the car, ate some snacks, and listened to the rain pound on the windows & the roof. And I don’t know what happened next—maybe we got bored, or maybe it was pent up stress transformed into curiosity or maybe it was just the magic of kids turned loose to do what they want, but the fact is, before long we hopped out of the car & turned into a bunch of loonie toons playing in the rain and getting soaked. Dan showed the boys how to collect water in leaves and drink it down; we chased rainbows (which look like they are right in front of you in a sun shower!); we learned where all the moose hang out from other adventurous rain-loving weirdos; we hopped back in the car when we got cold & we pulled over whenever we found a spot that looked remotely magical, & it was always better than we expected. *** It was supposed to be this great organized perfect thing. It became this great, unraveled, messy, MAGICAL thing. And I don’t know why but I just can’t escape it, and I fall head over heels in love with that dang authentic; throw the plan to the wind; to the core of your soul deep; messy; essence of life magic every stinkin’ time.
Every. Time.

First week of school

First week of school in the books! Do you think we could do the year like this? 👆🏻 Because as I got bombarded with a million questions about homework and had to remember passwords for the thirty school apps I started to wonder… 😬 Hits you hard but we’ll find our groove. 💪🏻

@puccimanuli Has some beautiful books that my boys love!

Food Sensitivities

Journey of 1000 Bites 🥄 : Away back in April I asked for advice concerning some eczema on Lydia's cheeks. I received some excellent advice on lotions, etc., which we have diligently followed. The situation has improved, but never quite resolved one particular persistent patch, and I have never quite shaken a concern nibbling at the back of my conscience that perhaps what she is dealing with is not eczema at all, but some kind of allergy manifesting as a skin irritation? I had no idea, but decided to do a home allergy test (one of those send in a blood sample by mail types) and see what results came back. Depending on the results of that, we would follow up with an allergist if needed. Well my friends, we took that little home test about a month ago, and the results shocked me. The company tested for sensitivities to 96 foods, and Lydia tested positive (to varying degrees) for 34. THIRTY FOUR. Rocked my world. I am lost somewhere between "Is this a complete scam and these results are bogus?" and "This makes absolute sense." Many of the results--especially severe sensitivities to some foods with dairy & gluten--fit the profile of an individual with T21 & hypothyroidism. It could explain her minimal weight gain, and perhaps some of the other health issues she faces (including the feeding difficulties we have faced for years??!!). Nevertheless, the extensive list and the lifestyle changes it requires feel like ONE MORE THING to make this journey ever more adventurous/overwhelming 🏔. I'd anticipated embracing the gluten-free lifestyle at some point with this girl, but had not seen it coming quite so soon. So here we are, ordering ever so many cookbooks, adjusting our nutritious smoothies, making an appointment with an allergist (and psyching ourselves up for more labs 😫), and preparing to flex our creative muscles for new adventures in baking! I try to remind myself often that I am a CREATIVE, and that doesn't just apply to making art 🎨. Life is an adventure and God has given me ever so many opportunities to use my creative powers to find exciting solutions and problem solve in fantastically innovative ways! How exciting! Right?! 🥴🤞🏻

Sillies

Lydia mustache you a question… 🥸👉🏻 Have you smiled, today?? 😄 #misslydiefaith

Soul-catching

You’ve heard of Indian summer and golden summer and midsummer and late summer… well, this has been the summer of my unravellings. I write all my best essays between 1:30 and 3:30 in the morning. The words just flow out of me then, with no children or chores or errands or NOISE, mostly, to distract me from my own thoughts and all apparently I do have to say when I find the energy and atmosphere to string it all together. It’s the worst kind of agony, that pent up creativity bursting forth at ungodly hours when you know you need to be catching your rest but you’d love to be catching your soul, too… Most often logic wins over heart and I force myself back to sleep. I know what happened to Sylvia Plath and the rest, after all.
The unravelings continue… I say “No,” more. I feel guilt less. In between researching & scheduling all the children’s therapies and vitamins and doctors visits, I make time for my own. It’s just been five of the most traumatically transformative years of my life we need to address, after all. I respect that I’ve been through a lot. I listen to my body. I stop when things hurt. I set strong boundaries. I no longer believe everything I hear. I give things time. Everything takes time. I give me time. I am learning to fill my lungs the other 75%.
It’s all connected, this handful of pocket scraps I’m giving you, today. Turning the tangled yarn ball of me into a reflective gossamer strand of spider silk, blowing in the wind.
I’ve always asked God to help me become the artist He needs me to be. Today I asked Him to help me become the artist I need to be.
That was a breakthrough.

Woodland Puzzle

Playing puzzles in the dirt 😄 The day after we shot these images, I was cleaning up the toys & realized we’d only made it down the mountain with 8 out of 10 of the little wooden leaf puzzle pieces 😱 A couple of those dark brown ones camouflaged too well with the dirt/rocks on the path 🥸😅 Good thing we live right next to the canyon—we scurried right back up there the next night and found them right where we’d left them. I was grateful no one had hauled a little wooden leaf off as the perfect hiking souvenir! My complete-set puzzle OCD would never have been able to handle it. 🧩🤞🏻💆🏼‍♀️ Thanks to @puccimanuli for this adorable set that Lydie loves to count 🥰

Pioneers

Today is a unique holiday in Utah: Pioneer Day. A lot of us round these parts 😉 can trace our heritage back to the early Mormon pioneers who were forced out of the eastern US back in the 1840s due to religious persecution. They settled out in the deserts of Utah on land nobody else wanted & made do, transforming that land into a prosperous area. This holiday is meant to celebrate their faith, resilience, & ingenuity. A common phrase in my church is “We are all pioneers” and while I have casually agreed with that statement in the past—I mean, no one has lived my exact life before in this time period before, so sure—today I felt it in my bones. Today I realized that, to my knowledge, no one in either my family or Dan’s, in recent or distant known history, has ever had a family member with Down syndrome. No one in our neighborhood has a child with DS. We are one family of very few DS families in our school boundaries. We are, quite literally, pioneers. I think of my Mormon ancestors who we’ve held on a pedestal my entire life: their incomparable bravery, their sacrifices, their unwavering faith. Their crucial journals that reveal their inspiring stories. I look at my own life and think, my goodness—whose idea was it to give clumsy me such a role & responsibility?! 😂 I know I am not a perfect pioneer, but I do relate in some ways at least to the struggle of pioneering. Lydie has carried most of the physical battles, but I think Dan, the boys & I have all taken turns pulling the emotional handcart. Not without complaining mind you (real talk), but I have a rather famous pioneer ancestor who kept it real in her journal so maybe that’s allowed. She makes me feel human & inspires me—not shying away from acknowledging the hard parts, but still having faith enough to see them through. I thought of her example today when we sang this anthem honoring pioneer grit:

“Why should we mourn or think our lot is hard?
'Tis not so, all is right
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins, fresh courage take
Our God will never us forsake
And soon we'll have this tale to tell
All is well! All is well!”

Worthy

Hey, Friends 👋🏻 We’ve had a couple poignant (and painful) experiences lately that have reminded me of how important it is to shout this girl’s worth to the world. I have a lot of doubts about a lot of things… me, my words & abilities, the internet, social media, etc… but one thing I do not doubt is Lydia’s worth. I also believe in the capacity for people to change, because I have experienced that, myself. I was once a very ignorant person regarding those with disabilities… I often refer to gaining “new eyes” and often think of the song Amazing Grace: “I once was blind, but now, I see.” I think people like Lydia were sent here by God on purpose to help us see so many things that our natural eyes skip right on by. But there’s a literal training process; a paradigm shift that has to happen. And it starts by noticing, then KNOWING, first in your heart and then in your every action, that these people—all people—are of great worth. I’m going to be shouting that a little louder, now, because I’ve been blessed to both SEE and KNOW. #misslydiefaith

Summer Speeding By

Oh June, you went too fast. 💛 Here we are in July. I finally finished reading the entire Fablehaven series with the boys. It was, start to finish, a magical experience. Lydia has discovered her cousins and is finally mobile/healthy/noise-tolerant enough to want to run around and play with them and it does my heart so much good. Dan is super busy with work & church and somehow still has energy to catch all the balls I’m dropping with these stupid migraines. While things are improving on the headache front the progress is ssssslllloooowww and I still have pain & light sensitivity more days than not so the lessons in patience and simplicity go on (my strengths 🙄). The playset & hammock swings continue to be the best decisions we ever made. It’s almost blackberry (homemade ice cream) season. 🎉

Happy Fourth!

Hope your 4th is full of joy and making fun memories! 😄💛🇺🇸

Bryce Canyon Hike

The light & scenery in this shot is gorgeous & that was my focus (along with the interaction between that cute little pair) put the downside of these tiny squares is you can’t see the ridiculously huge grin on Lydie’s face so I’ll include a closer crop for you. 😁

#am_nationalparks #mangosdobryce