Growth

I was an anxious child.
I remember going on family vacations and not being able to really pay attention to where we were or what we were seeing because of all that I had brought with me:
Worry, worry, worry.
It took so much time and so many years and so much help and unraveling the giant puzzle of my brain before I could finally, finally, go on a family vacation and BE THERE—unplugged from the world and the cares of it.
Now we go regularly and I lose myself in different ways, staring at the scenery or watching my own children in their freedom through my lens. In those moments I simultaneously claim, I reclaim, and I also
Let it go, let it go, let it go. 💛

You Always Matter

I ugly-cried when Lydia’s teacher sent me this picture and told me it’s been an honor to have her in class the last two years.
I’ve never sent any of my babies to preschool before this one—I just did it at home myself because that’s what our crazy lives required. But now our lives are a different kind of crazy with new requirements & this mom needs all the help she can get. Heaven knows our attendance record was a lot more miss than hit as the medical issues seemed to pile up this winter, but Lyd’s team never stopped checking in on us. When Lydia missed her class program today (due to being up all night 😴), I shrugged it off as “just one more missed thing” and didn’t think it hit me that hard—I didn’t let it hit me that hard. But then that email came through celebrating my girl and her growth and her milestones and her existence, anyway, and I lost it. I lost it and sit here humbled with ugly tears streaming down my cheeks thanking this teacher for maybe the biggest lesson of all. It’s one I’ve learned before, but let’s take a beat and REMEMBER. You matter, Lydie girl. In sickness and in health. In your presence and your absence. On the days you willingly give all the right answers, and on the days you don’t. When you’re loud and when you’re quiet. When you’re happy and when you’re sad. You matter forever and always just for being you. And so we notice and give you the space you deserve. Baby girl, I am proud of you. And to her teacher especially, thank you 💛

Happy Mother's Day 2023!

I was walking Lydia through the children’s hospital once when I saw another mom accompanying her child to an appointment wearing a shirt that said, “Mom AF”. I felt that in my bones 😆
Today at church a woman was catching other women in the back of the room and showing them a gif of Wonder Woman on her phone. WW was throwing punches with lightning coming out of her bracelets and the woman was saying “This is YOU!” She caught me, rocked my hand, and told me, “You are a MOM.” And since I had just wrestled Lydia for an hour exhausting every toy in my bag (and every non-toy, too), I felt that as well.

I don’t know what this day holds for you, but if you’ve ever loved a kid and have some stories to tell from that wild ride, I submit that those two messages/badges of honor above are meant for you, with love, too.

Happy Mother’s Day 💛

Welcome Back to the Great Outdoors

Last year my migraines were so bad that I hardly went outside AT ALL 😭 I was wearing sunglasses INSIDE during end-of-school activities. It was absolutely debilitating 💔 My happy place is the great outdoors and my soul missed it terribly. I had to give up shooting clients which was also sad. After a year of basically inside time & the longest winter ever 🤪, many new additions to my sunglass collection 😎, and some miracle migraine medications, my eyes can tolerate light again! 🙏🏻🙏🏻😭😭 My gosh, never take the little things for granted. Beautiful world, I’m coming for you this summer with my arms & heart wide open!!!

Embracing Play

This picture was taken in February. Not a lot has changed since then, except more snow 😜 Let’s talk about creativity—however that shows up for you. I am an artist. I write and I take pictures. My mind has always worked by freezing fragments of time in images either linguistically or visually. Except when I get burned out. Except when I get stretched too thin. And lovelies, I have been stretched very thin for a looong time. The art in me has stagnated which is a sign that the HEART of me is stagnant. And that’s not good. Big flashing warning sign not good. I’ve tried a lot of things to address it… but the funniest experience happened last week. I went on vacation (which alone was unheard of!!!) and I spontaneously immersed myself in play. A game I made up on the spot based in images and poetry—the very things that lie at the heart of me.
And you know what? That CREATIVE PLAY for 3 days straight was more rejuvenating & inspiring to my artistic soul than anything I’ve felt in a long time.
No pressure, just play. No rules, just play.
Play play play at the heart of what is true to ME. And I realized two things: 1) This is your content (poems & pictures). And 2) PLAY MORE.

Go play today. It’s been a long winter. 💛

Happy World Down Syndrome Day 2023!

Last week in church a woman approached me with a folder full of pictures. They were pictures of her sister, who had Down Syndrome. Her sister at five, the same age as Lydia. Her sister around 18 in a beautiful senior portrait. Her sister at age 50 in a stylized shoot fulfilling a lifelong dream. And finally, her sister leading a group in music, beaming from ear to ear. It was such a beautiful GIFT to see those images and consider the future. For Lydia’s birthday a couple weeks ago, we got covered in chocolate cream pie and danced to Journey. Today she sang and danced with me to Taylor Swift. Last night I watched her take Dan by the hand and lead him through her bedtime routine while his heart melted on the spot. As we bid the boys goodnight the other night and they headed off to their rooms, we heard a garbed but still discernible, “Bye! Love you!” ::kiss kiss:: 🥹 Her favorite (and our favorite) thing is to throw her arms out wide and ask in her tender high voice, “Hugs?!” Often when she’s a complete mess/it’s least convenient 🤣 No one has ever turned her down, yet. I’m tearing up this very second just thinking about what a complete GIFT of a human this angel Lydia is and how very grateful I am to have her. How I hope that we as a society SEE her and other individuals better for who they are and all the remarkable ways they can contribute and the things they have to offer. I haven’t stopped being amazed and she hasn’t stopped finding ways to bring us joy, yet. Happy World Down Syndrome Day. 💛💙

Tech Choices

Two pictures; two stories.
Last night I downloaded some toddler learning apps onto our ipad and spent about half an hour with Lydia playing matching games. Some of her IEP goals include matching as well as identifying colors & shapes. Some of my personal goals for her include teaching her to count & recite & recognize the alphabet & numbers. I’ve purchased books and toys and she has watched hours of educational videos regarding these concepts. Lyds is smart but doesn’t volunteer a lot of information, so it is hard for me to determine what she knows, exactly. I know she sings along with YouTube videos, but is that just because she has the songs memorized, or is she really learning things, for example? Well, last night she put me in my place as numbers popped up on the screen and she correctly identified several of them by name even when they popped up out of order. 🤯
The second image shows Lyds on a toy phone. I have caught her more than once observing Daddy and I lounging and catching a quick moment on our phones, so she hurries to grab hers and join in. Oof. Hits different little mini me sponge. I see you, seeing me. So quiet, yet so loud.

Reflection

Oh look, it’s our Christmas card 😆
I’ve heard it’s good to post your own face on here once in awhile in order to prevent hacks… seems like a good idea. This is us. I’m the blonde in the middle. Recently turned 38. I’ve been reading very slowly & methodically JoAnna Gaines’s book “The Stories We Tell” this year, and it has hit something deep in me; hard. When Lydia was born I remember feeling like my world was so rocked—my concept of my own identity/future was so rocked—that I wanted to go journal diving and picture diving and see if I could find somewhere within my own history hints of scraps of character that I could piece together into this new person I felt like I needed to be. In a chaotic, post pandemic world, approaching my forties (with a 20 yr hs reunion this summer to remind me of that lovely fact 🥴), I find myself… I don’t know. Reviewing. Categorizing. Life-lessoning. Getting to the roots of things. Calling things what they were. It has been… a lot. To look at my own life with adult eyes. At times freaking overwhelming. At times enraging. At times empowering and filling me with gratitude & faith.
I for sure wasn’t ready for that emotional journey, but I think that’s what midlife crises are made of, no? 🤣
If I’m only halfway through this ride of life, good thing I’m surrounded by the best of the best, with plenty more time to make mistakes and figure things out.
And girl’s got a fighter’s heart, I’ll give her that. 💛

Unexpected Flashback

These things always catch you off guard, & it’s been such a busy day. We have literally jumped from thing to thing without stopping. Fresh from nephew’s b-day party & headed into son’s basketball game number 2, a woman with beautiful, brown, curly hair caught me by the elbow, her eyes smiling from me to Lydia & back again: “Remind me of your name?” “Annie,” I replied. And she explained, “I was a nurse manager in labor and delivery…”

The whole world stopped. She remembered Dan. She remembers Lydia. Lydia who became the first baby with medical or developmental differences to be pictured on the walls of our local hospital’s labor & delivery and mom & baby floors. Lydia who broke my heart wide open & now holds a sacred, cherished space up on those hospital walls honoring all those who came before & will come after her. Lydia who shines so that other broken-hearted parents can hold their new babies to their hearts, square their shoulders, & hear our welcome message to their angels loud & clear: “You are worthy, you are loved, you belong, you belong, you belong.”

Lydia is five now, I was able to tell our nurse, who couldn’t believe it. She no longer works in L&D, but she still remembers our girl and is touched by her. These things are like that—utterly life changing in a way you can’t explain. And it’s not because of us—it’s because of these T21 kids; the nature of their coming and being and all that entails.
Dan still has a list of our favorite nurses on his phone. We pulled it up and looked at it after the game had started and we’d found our seats. I still have deeply personal & emotional letters I wrote to several of them, kept in a journal somewhere. Trauma has robbed my memory of many of their faces, but not of our conversations, their kindnesses, or their life-giving love in that most tender time.
Five years but I remember, & apparently others remember as well. Hopefully the world is a little bit better because one little girl showed up & rocked a few boats 5 years ago; I know mine is. Harder, but better. Fuller, more understanding, more diverse. Stronger, but softer. A million little things.

It was awhile before I could choke it all down & focus on basketball.

The Hair

“Rapunzel & the Super Scary Sensory Monster”
That would be our children’s book. Maybe I’ll write it one day ::sigh:: This girl who LOVES to have her hair down and cries when I braid it or pull it back, but who HATES to have it combed or dried.
Our latest post-bath time routine involves terrified full-body bear hugs (legs and all) while I blow-dry her hair and constantly reassure her, “Mama’s got you.” These sessions simultaneously break and melt my heart (almost literally as it’s really hot with all that hair, hot air, hugging & wrestling going on 😅). But they mean a lot to me and reaffirm in a new and different way the sacred space I hold. I am her safe space. …Oh that’s a heavy place to hold. But we keep holding it. We keep hanging on to each other, sometimes like we’re hanging on for our lives, sometimes just breathing each other in. I’ll do my best to keep you safe, you’ll do your best to keep me grounded and laughing. This is the sometimes dance, sometimes full-body terrified bear hug. “I’ve got you, I’ve got you;” on and on we go.

Anticipating 5

My baby turns five this week. 💛 This is not the birthday post—this is the pre-birthday post. Because these milestones, they involve a lot. We are going to celebrate her so hard. Her miracle life, all her favorite things, the absolute joy that she brings us every single day. It is going to be a celebration of love; I’ve been preparing for weeks.
Meanwhile we’re also attending to the other birthday things… The annual IEP, the doctor check ups and labs. This year there are some special evaluations and a potential heavy new diagnosis on the table as we prepare for her to enter kindergarten. My girl is a brilliant ray of light and joy. She is also largely nonverbal and in need of more support. I celebrate her at the same time I in equal measure worry about her… the scales rocking back and forth on their wild ride throughout our days.
As I sat with her on my lap recently, I felt the daunting shadow of uncertainty cross our future once again. What will another diagnosis mean? How will it change things? How will we carry it?
I don’t know the answer to those questions—I never do. What occurred to me in that moment was that those answers, those questions even, don’t matter. She will still be Lydia. And she is perfect.

Fridgid February

Had the pond all to ourselves today. You know why? It was LUDICROUSLY COLD 😂 We live in an area that gets a good amount of wind by the mouth of a canyon. Add to that some frozen water and brrrr!! My fingers haven’t hurt like that—in gloves—since Minnesota. It was a day I would have been content to stay inside, but the sun was shining and Dan insisted we get out. As we piled out of the car bundled in hats and scarves so that only our eyes showed, Dan joked, “We do it for the 365.” It’s like an extreme sport, guys. 🤣🥶

Whose Cause is Love

For those who wear red in February,
Mis-matched socks in March,
Masks in winter or when you are sick,

For the ones who walk or run
for a cause—any cause—
Whose personal Cause is Love

For those who wear a necklace or shirt made with someone in mind—or no token at all but
Teach children and others to See and Include

You are the Ones
the True, the Powerful
The Difference Makers

We love you. Thank you for being Our People. ❤️♥️❤️

Broken Hearts to Mend

My little girl full of light. It’s a wonder to me that her tiny body was born with a broken heart: 3 holes and a bicuspid valve. Two surgeries and a severed electrical system now powered by machine. Medicine, men, and miracles saved her. Our lives have and always will be full of appointments for the broken-hearted. And yet, and yet… she has the strongest, purest, most fully functioning & perfect heart of anyone I know. Far healthier than mine. Far closer to God. How different the measuring sticks are for body and soul. I believe in the grand scheme of things, when Lydia was born we both received the same diagnosis: you were born with a broken heart. One physical, the other metaphysical. This is what it means to be alive. The same surgery that saved her life and set in motion her journey set in motion in new and more advanced ways her mother’s. A different heart, a different system, different holes needing mending; forever intertwined.

January

A 365 makes a lot of pictures… here’s January (or at least what’s edited so far 😅) #amango365 #amango2023

How I deal with January...

“How are you doing, Annie?”
“I bought myself 5 books of poetry for my birthday in hopes of feeling something.”
“So, it’s January, then?”

Yes, but my birthday means the end of it. ☀️

Origin Stories

Can you point to the moment(s) in your life that have defined you? The inciting incidents that started you on your own personal character arc? I’ve been reading Joanna Gaine’s book “The Stories We Tell,” in which she encourages us to look into our own personal origin stories. Parents of kids with Down Syndrome seem to do this naturally. When meeting one another someone inevitably asks the question, “How did you find out?” referring to whether their child was a prenatal or birth diagnosis. Even within the two camps of “pre” or “post” there is such diversity of stories. I always marvel, for example, at the healthy birth stories. The parents whose babies were perhaps, like ours, diagnosed at birth—there’s nothing that can prepare you for that amount of shock or the emotional rollercoaster that follows—but were then able to leave the hospital with their newborn in tow & commence a somewhat-different-but-mostly-normal bonding experience with their baby at home. And then there are the medical families, whose weeks & even months post birth involve NICU stays, oxygen machines, feeding tubes, surgeries, & other unexpected interventions.
At the risk of oversimplifying but for the sake of considering origin stories, I’ve tried to put into words here some “lessons learned.” I have come to appreciate the different but defining moments of different life experiences. That said, no one has a monopoly on any characteristic; & life certainly has so many incredible lessons to teach us all, no exclusions applied.

In the families whose children have always been healthy I see such amazing cheerleaders. Parents who fearlessly accept their child as they come, & do not accept any limits. So often these parents show us all how to raise our expectations, not take no for an answer, & believe the sky is the limit. Raising a special needs child always has significant challenges, but so often these parents empower all of us by simply showing us that our kids really can do & become anything with support, work, & love. They are always broadening my perspective & encouraging me to be brave. I’ve needed & relied on them so much!
Our beginning was rocky & laced with fear. Not only did we receive a birth diagnosis, but less than a week later we received terrifying news about Lydia’s heart. The first year of her life was marked by weeks of hospital stays, complicated medical equipment, life-saving medical surgeries, & one very expensive medical bill after another. The first several years of her life our theme was literally survival. I have wondered, then, what our contribution to this community is. If we don’t bring the hype, what do we medical families bring? I will tell you: We bring the heart. We bring the fight. We know what it is to dig deep when you are OUT. To face the low, low odds. To scrape up your hope from the bottom of the barrel. To empathize & wrap your arms around your peers when they are breaking in their turn. You want empathy & tears & midnight meals & pillows brought to your hospital room at midnight? We’ve got you because we’ve been there & we cannot leave you on your own. We’re not always the party, but we are the soul.
***
These are my people. And man are we ALL needed. The ones to teach us how to fly & the ones to catch us when we fall. This is what makes up our beautiful community, focused on these beautiful children & their magical extra chromosome. So many different life experiences. So many inexplicable emotions. So much incredible love. 💛💙