I remember finding out at 20 weeks that she was a girl. I had always wanted a girl. I had big dreams for My Girl. I was going to teach her all the things; empower her in all the ways. Cheer 👏🏻 her 👏🏻 on 👏🏻. I grew up believing I could keep up with the boys and I looked forward to lighting that fire in another heart. I bought books; I prepared. And then…
So much changed with her birth diagnosis—but much is just like I imagined. Those priorities have come into even sharper relief, focus, & clarity. That desire to champion & empower has been refined… and redefined.
At first I thought it would all be different; but I’ve realized it’s actually just the same:
Don’t let them tell you what you can or cannot be.
Don’t let them tell you what you do or do not deserve.
You’re only competing against yourself—be the best YOU that you can be.
YOU are Worthy. Always.
Your body is beautiful.
Your light is unique and necessary.
You deserve respect. Always.
We love you.
We believe in you.
We will always have your back.
All those things I planned to teach her still apply, only MORE. And the funny thing is, the more I see the absolute necessity of these messages in her life, the more I believe them in mine. Just one more way my girl is a miracle. ✨
Arms Wide
Serendipitous catch: Complementary colors; complementary poses. 😄 I think this is a natural human response to feeling a free & expansive sense of accomplishment?? 🙌🏻🙌🏻🧡🩵 Not pictured: my water bottle that sadly rolled alllllllllll the way down the hill and is much the worse for the wear ☹️
#am_twoboys
Reflection Magic
One of my favorite images I have taken lately! 🤩 Light, movement, depth, reflections, nature, & my people—who could ask for anything more?!
Running Free
No, actually, I did NOT say she could get this big.
Sibling Bonds
The temperature drops quickly in the desert when the sun goes down. Hiking down from Delicate Arch, we found ourselves shivering and breaking out our coats. Lydia, in particular, does not like to be cold. Her body doesn’t regulate temperature very well as a result of various medical conditions. Rarely does anything make her as uncomfortable or upset as being cold. We try to prepare for this as much as possible by bringing extra layers for her and staying ahead of it, but on our hike back to the car she began to fuss uncomfortably. My second son sensing her pain and anxious to help, began holding her hand, patting her back, and encouraging her along our way. These two, five years apart in age and interests, nevertheless share a beautiful and close emotional connection. Last night, after a busy day full of school and a soccer game, it was time for the kids to go to bed. This son, however, came back upstairs for a moment. “I just need some Lydie time,” he said. No other explanation was necessary. We all seek her out every once in a while just to sit in the unique bubble of peace that seems to surround her.
Spring Break Scenes
First slot canyon.
Spring Break Dreams
What Spring Break adventures are you having? Wishing I was out climbing red rocks instead of inside painting my bedroom, although I know this little makeover will be worth it. Aesthetics have a big impact on my mental health & our room is the last one to get an update from when we bought the house. Also we’ve got to get this done because I can’t live in renovation chaos anymore 😵💫 Still, those red rocks be calling… always… 🏜️
Hoops
🏀 The first year I met Dan I learned what March Madness was and filled out a bracket—it was like a whole new world 😂 #bless Now look at us. The boys have brackets going in the men’s & women’s tourneys and Lydie & I can just sit back and relax (tho I did advise on a few, so I have some casual stakes 👀) 🍿😄
World Down Syndrome Day 2024!
Happy World Down Syndrome Day 2024!!! We truly are lucky to have Lydia in our lives. There’s a 1 in 700 chance of having a baby with Down Syndrome in the US, and I for sure never thought it would be me. Each of the white balloons in the images above represent 100 people, and each gold balloon represents ONE person with Down Syndrome! We absolutely won the lottery with our Lydie girl! Having her in our family has taught me many things, but a message that particularly resonates with me are the words of Joanna Gaines: The world needs who YOU were made to be! People who have Down Syndrome tend to approach life in such a beautifully authentic way. Having a daughter in this often-misunderstood minority, and having the opportunity to advocate for her daily, as well as to see the incredible influence for good she has on so many lives, just by being herself, has taught me so much about the worth of every individual. This group of people with Down Syndrome has such an incredible capacity to share love & light. Our world needs them to teach us all a little bit more about ourselves. To be a little more authentic, a little more forgiving, to love a whole lot harder, and to never give up. And especially to remember that we’re worth it.
Lambs in the Foyer
I stood in the foyer at church, defeated, & emotionally exhausted. I’d already cried once, today. Having hopelessly abandoned all decorum, I absently gave Lydia my hands as she gleefully jumped from the floral -patterned couch to the carpet below. “1, 2, 3, jump!” she called, expressing one of her few, but favorite phrases, over & over. “Shhh,” I hushed half-heartedly, lest… nobody… hear. I thought about making her take her shoes off in order to be more… reverent? What is the proper protocol for jumping off furniture during church? I stared at the Minerva Teichert painting, Rescue of the Lost Lamb, above Lydia’s jumping couch, fully aware of the irony. Thirty feet away from me behind a pair of heavy doors I had been unable to open with two hands without Lydia running away in the opposite direction (true story), our congregation of several hundred people met together in worship. And out here I was, with the one. Jumping on the couch.
I’d already tried to make a moment out of it:
“See the sheepy, Lydie, what do sheepies say?” “See the sun?” And finally, hoping, “See Jesus?”
She didn’t care. Not even about the sheep & my animal noises. Disinterested, her eyes glanced over the painting, not really landing on anything. No pointing. No identification. No signs of interest. I didn’t have the energy to hold her up there any longer, physically or emotionally. I gave up.
“1, 2, 3, jump!”
Rather than listening to the meeting piped through the speakers, I found myself talking to the painting. “Is this worship? Really Lord? This? Jumping? Isn’t there a better way? I already get so much time with Lydia. Wouldn’t someone else profit from being with her? Or many people? What of inclusion? What is the point of… this??”
“1, 2, 3, jump! 1, 2, 3, jump!”
Again, again, again.
My thoughts wandered. And then, out of no where, Lydia turned around, touched the painting, & said one word:
“Jesus.”
I was stunned. And all I could do was whisper back affirmatively, “Jesus.”
She went back to jumping.
I often don’t understand things. I often don’t see the full picture. I am often surprised.
I don’t think Lydia was the lamb in the foyer being held, today.
Conquering Mountains
She came as a surprise & surprises continue to follow her. Perhaps that’s why hiking has become our family pastime. The strenuous effort of navigating rocky, off-beat, lonely paths; of sweating it out, taking long breaks, bearing blistering heels & burning lungs. Of heavy packs & trail snacks. Well wishes for passers by. Noticing little things—seasons, wildlife, plant cycles, bugs. The need to be prepared for anything as much as possible—maps, first aid kits, lights, water, bug/bear spray, sun screen, clothing. Each of these seems to be a metaphor for our larger life story. And still the surprises keep coming, appearing suddenly & unexpectedly like the final destinations, the fantastic, panoramic, rewarding views on one of our family excursions.
We received such a surprise on the trail recently to Delicate Arch. The hike to Delicate Arch is ranked as “moderately challenging,” & takes us about an hour to travel the 1.5 miles from the trailhead to the arch. There’s a section of the trail that is quite steep & over slick rock with no shade. That section always makes my unathletic self tired & my lungs burn. I’ve seen a wide variety of people navigate the trail; some excelling & some truly struggling. Delicate Arch is one of the iconic draws to Arches National Park & is the arch featured on the UT license plate, so it’s no surprise that many want to see it.
As we approached the base of the slick rock pitch this time, we passed a family going the other way: a mom & dad, & their adult son with Down Syndrome. Seeing families like ours out hiking is rare, & I immediately stopped to say hi. We shared the typical conversation between T21 families: A “You? Us too!” kind of thing. We swapped the names & ages of our kids. I asked if their son had made it all the way to the arch. She assured me that he had with lots of breaks. As we turned to go, wishing each other well (on so much more than just a hike), I had tears in my eyes. Looking at Lydia in her carrier—50 lbs on Dan’s back—we’re running out of time with this method & we know it. But we look to others who have gone before & conquered mountains, & have faith that we will be able to in time, in our own way, as well.
Take It With You
I don’t know what they’ll take from it—these experiences we’re giving them. These habits we’re forming.
Get outside. Get away from it all.
Learn to listen. Learn to see.
Move your body. Learn to be still.
Appreciate.
Don’t just consume. Don’t just demand.
Create. Feel. Give thanks. Give back.
Feel your place in something very large.
I don’t know. I hope they get it. I hope they go out there and find fulfillment. I hope their hearts grow roots in nature & its direct ties to Divinity. I hope it anchors them. I hope it feels like home.
Rugged
Those Southern Utah Red Rocks.
Arches NP 2024
Love watching them grow up on these rocks. Love sharing my appreciation of the outdoors with them.
***
Love keeping this little personal record going. #am_nationalparks #mangosdoarches
Celebrating Birthdays, Celebrating People
When I was expecting Lydia, I was looking for something. Dan had just finished grad school & was chasing his dream career. I’ve always been a driven person, & a big part of my heart hungered for a similar journey for myself. It’s hard to be a young mom, move around the country multiple times, & pursue personal interests… I was doing my best trying to keep up with writing and working hard on my photography—and making big strides! But it felt hollow, because despite having skills, they really had nowhere to GO. So at one point, I started praying: “God, please give me a story. I’ve got these skills and nothing to do with them. Please show me how I’m supposed to USE them.”
Be careful what you ask for.
Along comes Lydia.
First thing’s first: the world stops, then flips over, & everything is chaos. Priorities, paradigms: inside out & reorganized. Her medical battles were all-consuming. I found writing was the only emotional relief-valve I had. Often times I couldn’t cry UNTIL I wrote about an experience; THEN I could feel it. (Now I worry that I probably should but don’t want to write because I’ll KEEP feeling it—the ironies of trauma).
All this time I was learning; combing the web & viewing others’ stories about life w/ DS. And I thought, “Maybe that could be us? Maybe we could be someone’s great inspiration? An incredible redemption story? Maybe this is what I’m made for?!”
Everyone wants a shiny destiny.
Lydia’s birthday is truthfully one of the hardest days of the year for me. Not only does it mark a day of intense trauma, but it marks traditional milestones. And you don’t realize how many or what emotional impact they have until you have a child that breaks the mold.
The first couple yrs of her life I spent thinking things like. “Maybe next yr she’ll eat her birthday cake…” “Maybe next yr she’ll talk…” “Maybe next yr…” It wasn’t until she turned 5 that I stopped w/ the maybe’s & made myself accept what IS. When birthdays became not about what SHOULD be, but about just BEING. When we stopped celebrating all that it means to be 2 or 4 or 6, and started simply celebrating LYDIA. Can I tell you what that did to my heart? What that did to the day? It no longer mattered if she ate cake or even if we HAD cake. We ate what Lydia would enjoy. It no longer mattered if presents were wrapped or if it took days for her to accept her toys. We simply learned to manifest unselfish love, all day, for the girl who changed our lives.
It has taken me awhile to apply the lesson to the other 364 days of the year. It has taken me even longer to accept that the lesson applies not only to Lydia, but to myself.
Because friends, I don’t Influencer well. And neither does Lydia.
Some kids with DS do amazing with crowds of people and posing for photographs and socializing. It’s a real challenge for my girl. In spite of the fact that her mom is a photographer.
Some kids with DS graduate from HS and go on to have careers and become motivational speakers. I will NEVER place limits on my girl and we will keep using and fighting for every educational tool we can find for her entire life—but so far, Lydia is considered non-verbal and has some severe learning disabilities & challenges. She may, or may not, go to college.
My child might spend a lot of time in the hospital and will have innumerable surgeries. She has to, to stay alive. As soon as that pacemaker went in, it was the deal to get to keep her.
3) One thing I have had to come to terms with is that no two children, even children with DS are alike. And I cannot FORCE Lydia to “succeed” by the world’s standards, whether that be academically or socially or likes on Instagram or some crazy idea of a redemption story.
AND I DON’T HAVE TO. She already IS everything she has ever needed to be. Ever.
And so am I.
It doesn’t have to be shiny.
No secret number of likes or followers has to validate worth.
There is no such thing as earning redemption.
The goodness is already there.
The Love is already earned.
We just have to celebrate it.
Birthday Girl
Miss Lydie Faith 💛 Somehow you are six!! And yet, my beautiful diamond in the rough; my magical, multifaceted prism child that reflects light through each and every unexpected angle—you are not only six, but every age leading up to six, and perhaps some beyond, as well.✨
Thank you for spreading your abundant joy throughout our lives during your beautiful fifth year. Thank you for not growing up quite yet, no matter what the numbers say. Thank you for still requesting snuggles, for finally reconciling yourself to letting me comb (if not cut or blow dry) your hair. Thank you for joining my obsession with Taylor Swift and for never ever growing tired of her (like EVER). Thank you for working so hard on your words and for loving school because I’ve never missed a child like I miss you. Thanks for making me work out with you at dance—maybe some coordination will finally rub off. Thank you for appreciating sparkly things and for not appreciating noise—I have been carrying the banner alone in this business for too long. Thank you for your laugh which brightens each and every day and heals every heart that hears it, especially mine. We love you to the moon. 💛 #misslydiefaith
Red Rock Therapy
We went to Arches over the long weekend. One day was bitter cold. One day I had a migraine & the kids were sick. One golden day was perfect.
Through it all there was color and water and light. There were my people. There was creativity and good energy and awe. There was nature and outdoors and minimal distractions. It set my heart strings vibrating again. One quick inhale in the middle of winter to get me through.
#am_nationalparks #mangosdoarches
Primary Children's
The day Lydia was born, Dan met me after 3 job interviews. The “we regret to inform you” news fell heavy but flat somewhere after “Your baby has Down Syndrome,” and, “your baby has 4 congenital heart defects & will need open heart surgery.” With no future job prospects, we soon faced Dan’s fellowship & our insurance coming to an end within just months, all with our daughter requiring life-saving surgery. It was a frantic time. My prayers were anguished; desperate; unceasing. They were sad, raging, mortal prayers, but somehow heard. Two months before Lydia’s surgery, Dan started full-time at Primary Children’s Hospital. It was, by no exaggeration, a miracle for our family on multiple levels. A witness of a very patient, Seeing God.
A couple of actual years, but a lifetime of healthcare (personal & professional) experience later, Dan applied for a different position within Primary’s (administration, oncology). At this juncture, I felt something I never felt before regarding his career: deep personal investment. Things were different. This was not just another job in a field we had long considered from afar. This was a job in a field we were intimately entangled with. These were our people—both caregivers & patients. Especially patients. My feed, every day, is full of warriors w/ connections to children’s hospitals. These are our friends. We know their stories before and after the hospital. This is OUR story.
So when he said yes, I said yes, too. Emphatically. I knew that this new job of his would be hard, but I don’t think there’s a cause closer to our hearts or more worth a fight.
Primary Children’s just opened a new campus. Because of Dan’s roles, he had opportunities to help design parts of it. While my greatest wish for you is that your children never have to visit, please know that if they do, great love was put into it—and walks into it—for you and your precious kids, every day.
Heart Week 2024!
Happy Heart Week 2024! ❤️❤️❤️ Admittedly, knowing we are going into a pacemaker surgery this year, and having already spent some time in the cardiac care unit with RSV, it’s a little closer than usual. This sweet girl of ours and her warrior ways. Always strong, always fighting. Always reminding us of what’s important and to make each day count. To all the warriors, to all the angels, to all the families. ❤️
Survived January.
Happy February, friends. We did it.✨
