Frolic

Do you just need to go pick wildflowers, frolic, and feel joy? Same. But sometimes I forget? And that’s why God made people like Lydie. 🌻🥰

New Perspective

Humans are critical thinkers and systemic beings; it’s how we survive and how we feel safe in the world. We create structures and boundaries to maintain and support order (at least for the dominant group). But there’s always outliers to the system, and people with disabilities are some of the most obvious outliers. As system-programmed participants, we generally respond to outliers in one of two ways: either with compassion and understanding, or more commonly, with fear and apprehension.
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People with disabilities used to scare me because I didn’t understand them. I lived too much within the system of rules and boundaries and expectations. But now I see differently and with a wider perspective. Take Lydia’s age, for example. When I drop her off at kindergarten, she is 5. But when she is at home, jabbering away in her own language or needing me to feed her, she seems much younger. Lydia lives outside of time in many ways—it’s fluid for her. And when you remove specific boundaries, all that is left is core principles: childhood and parenthood. Nurturing and love.
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Rules, systems, expectations—they keep society going, I get it. Milestone-making productivity is a great thing. But it’s not the only thing. And stripping away some of the “rules” has opened my mind to many of the core aspects of humanity in their purity: Joy. Pain. Connection. Wonder. Communication. Struggle. Determination. Triumph.
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Not only have I replaced fear/discomfort with compassion and understanding for the outliers, now; I CELEBRATE them, and thank my lucky stars I get to learn at their feet.

Kindergarten?!

Last night as I was going to bed & imagining what this day would be like, I thought about dropping this girl off at the kindergarten doors and thought ‘There goes my whole world.’ But I realized in an instant that for Lydia, that phrase doesn’t go far enough. When this kid showed up on the scene 5 years ago, she not only became a part of, but obliterated and remade my whole world. In one fell swoop and a million micro & macro lessons thereafter, she changed my life course and my worldview.
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There goes my moral earthquake.
There goes my paradigm shift.
There goes my life redefined.
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So was it a big deal when my whole universe walked into kindergarten today, complete and utter darling miracle that she is? Yes, it was. And you darn well better believe it when I say, “Look out, this one’s a world-changer!” Because trust me—I know.

One Thing

Yesterday I left an examination room with my daughter feeling unseen, disrespected and discouraged. After sharing that experience with you, so many reached out to say “I get it,” “I’ve been there,” or “Keep fighting!” Your encouragement, empathy, and witness of our struggle brought tears to my eyes more than once. Thank you for seeing us.
This experience has underscored for me, again, the need we have to meet people where they are. It’s not enough to offer services once x, y, or z criteria are met. It’s not enough to provide, as one articulate friend put it yesterday, “placebo solutions” and kick the can down the road until the next appointment. It’s not enough to abandon parents to themselves to play doctor/therapist/teacher/caregiver/researcher/coordinator. IT’S NOT ENOUGH.
Meet the children where they are TODAY. Do not abandon them or offload their care to someone else because I’m telling you—there IS no one else. I know—I’m Mom and I’m currently wearing all the hats and I can tell you, it’s not working! And according to my inbox full of DMs, Lydia and I are not a one-off case. 💔 So let’s all throw those placebos in the trash where they belong and get some real solutions on the table—today. Let’s each ask ourselves, what is one way that I can meet this child WHERE THEY ARE, today. Because that’s what they really need. Maybe we can’t solve all of the problems. Maybe looking at the whole picture is too overwhelming. Trust me, I get it. But there’s always ONE TANGIBLE THING that can be done TODAY. That’s how we live over here. In baby steps and puzzle pieces. Can you imagine if I had a whole society on board contributing their one puzzle piece a day at a time? How much fuller and brighter and more complete would this girl’s future be?
One thing, where she is, today.

Communication

This morning I was getting ready when Lydie came in. She greeted me like she always does—not so much with words, as with an effusion, an explosion, of happy sound; arms to the side, eyes lifted and sparkling, grinning widely. The interpretation was obvious: “I am here, Mom! With you!”
I was in the middle of doing my hair, which is Lydia’s FAVORITE thing (doing mine, not hers 😆). “Hair,” she said knowingly, “hair.” “Yes, hair,” I replied, before taking her braids out and handing her a brush so she could play along. This is serious business. She watches my every move. Walks in semi circles around my legs by the counter. “Songs?” I ask, per the routine. Today it’s Adele. The set list is five songs long, and we’ve been practicing. I sing along to “To Make You Feel My Love,” then “Set Fire to the Rain.” She sings, too, sometimes with words, always with feeling. Her mood changes appropriately with each song. As we go, I’m pointing out words she knows, though I don’t have to—she’s already ahead of me. During Hello, she interrupts. “Outside?” she asks. I’m confused until the next lyric comes along: “Hello from the outside.” Of course.
Sometimes the songs are interrupted by my blow dryer. She is both terrified and intrigued. Hairspray is marvelously fun. But the crowning event, friends, is the final hair flip, when I turn upside down & fluff the whole mop for added body. Lydie comes running and giggling to run her fingers through my thousand golden strings, laughing and saying “soft… soft” which is not a compliment, but rather a reminder to herself not to get carried away with her joy 😂
Righting myself, I tame the bush into place and tell her we are all done, speaking and simultaneously motioning in ASL. She is disappointed—she could do this all day. I am sad to leave this moment of girlish togetherness, but know that we will be back to our spots, singing our songs, some with words and some without, tomorrow.

We All Belong

It couldn’t be more different—the spectacle, emotions, support—than when she was born. This is what we deserved all along…

Let’s back up.

Remembering Lydia’s birth, 3 words stand out:

Silence. Overwhelming silence. I was in shock, & no one would look at or speak to me. No chatty nurses. No congrats or cooing over her cuteness. No explanations over why she looked different to me. Just a quiet “Someone from the NICU will be down shortly.” Almost none of my nurses mentioned my baby during my entire stay until I finally, desperately had to KNOW IF THEY KNEW and if we could speak about the UNSPEAKABLE THING: “My baby has Down Syndrome!” Silence brings shame.

Darkness. She came in the middle of the night. After the bright lights of the delivery room, my recovery room seemed pitch black. My thoughts were black. My heart was broken & black. Our future was burned over black. Everything inside & outside, eyes opened or closed or spilling w/ tears, was black.

Loneliness: After the birth they took Lydia to the NICU & they took me to my room. And they left me there all night. No visitors. I don’t even remember a nurse checking on me though maybe that’s because of the shock. I just remember being alone, w/ all my terror. For hours.

Back to today…

True, a lot of things burned down 5 yrs ago. But a lot more has grown or been built back in their place.

Isolating silence has been replaced w/ either cheers, or instructive meditation. While silence isn’t always gone, it isn’t as pervasive. I try to open my mouth so that the shame of silence/misunderstandings never win.

The darkness has been replaced by brilliant LIGHT & perspective. I see farther & more clearly than before. I’m grateful for what I learned in the dark. I try to keep my eyes wide open to Lydia’s light & to never let them grow “used to it.”

The loneliness is transformed. There is support & love. There are hearts & hands & souls who want my girl to succeed almost as much as I do. Lydia’s PT came up & said hi to her today. I hugged several of my friends that I don’t get to see or hug often enough. There is PURPOSE and place for my girl and I both. As we walked down a sidewalk lined w/ individuals who clapped & cheered for MY GIRL, my eyes filled w/ tears. This is the vision & truth that should have existed all along:

You are loved, you are loved, you are loved. We all belong.

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 💛

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. 💛💙

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.

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.

What the Silence Says

We need to listen to the silence. It’s talking, and we’re missing it. It’s easy to hear the noise, the loudest, the most passionate. The messages and anger that have been shouted for so long now, garnered all the headlines, snatched up all the attention. We assume that the number of decibels is equivalent to the amount of pain, the depth of determination, the validity of the cause, and yes, even the number of ever-to-be-considered votes. But assumptions are not always correct, and the silence has things to say, too.

Sometimes the most valid causes, the most passionate proponents, the most long-suffering champions… run out of things to say. Sometimes their silence says it all.

In the Bible there’s a story of a woman who suffered “an issue of blood” for twelve years. We don’t know much about her condition, her lengthy struggle, or the suffering she must have endured. We do know that over the course of 12 years, she saw many doctors, spent all her money, and had only grown worse. I imagine she was exhausted in every sense. I imagine it was all she could do to endure.

One day, when Christ is walking through a crowded street, she seeks healing, comes behind Him, and touches His robes. She does nothing else to grab His attention—perhaps she couldn’t do anything else to get His attention. It was crowded, and she was unhealthy, penniless, a woman, and according to culture, unclean. Maybe after 12 years of suffering and living in a culture where individuals were trained to neither see nor regard her, she had nothing left to say. Maybe literally all she could do was reach out her hand in faith.

But to Christ it didn’t matter. Christ’s ability to listen and feel transcends crowded streets, positions of power, and even voiceless pleas. He stopped everything, and looked around for the one in need. He heard her. And He healed her.

I am a special needs mom. For various reasons, I have lived the last three and a half years in various stages of quarantine in order to protect the health of my daughter. First it was to preserve her for two heart surgeries and to help her through healing afterwards. Then, it was two winters of expensive medications and RSV precautions. And then, of course, Covid-19. At this point in my years-long crusade of keeping my daughter healthy, happy, and alive, I have run, not out of needs, but out of things to say. Like the marathon runner who carefully calculates her speed, the swing of her arms, the clothes that she wears and whether after 21 miles they will chafe…I know that every movement counts. Every interaction, every post, every email regarding policy, every hour spent providing therapy, every homeschool lesson, every time getting up in the middle of the night to check oxygen saturation levels, every trip to the doctor… IT ALL COUNTS. And I, like so many other special needs and high-risk families, only have so much energy to give; I have to be extremely conscientious of where that energy goes. It’s not because I don’t believe in something strongly. It’s because I am literally exhausted from keeping someone alive.

What I’m saying is, there’s a lot of silence that we’re not listening to. We’re distracted by the ones with the loudest voices, and we’re missing all the ones that frankly have nothing left to give. We expect everyone to show up and fight for what they believe in, impress us with their rhetoric, persuade us with their petitions or speeches or anger or whatever…but we’re not acknowledging the equal efforts being put forth on the other side. Battles that, in some cases, have been waged for a long, long time.

What parent among us, what human for that matter, is not exhausted at this point in the pandemic? We have all been pushed to our limits in every possible way. The exhaustion in me acknowledges the exhaustion in you in some kind of sad, sardonic, pandemic “namaste.”

Humanity, like water, follows the path of least resistance. We cave to the loud ones because we fear their energy and public criticism. We celebrate when someone else writes a post that we agree with, because then we don’t have to write it, ourselves. We let things happen because we don’t have the energy it would take to win the whole world over to our point of view, ourselves. And we’re all exhausted. I get it. I GET IT.

But I just want to say, silence speaks, and we desperately need to be listening to it, NOW. Silence has numbers and passion and validity and lives that count. The silent ones are working and hurting and trying the best they can, doing all they can, surviving as long as they can. If you have any energy left at all, I plead with you to use it to lift those who do not. To stand up for things that will make their lives easier. To look past the raging, angry, crowded street, to the desperate souls in need right in front of you. They need more hands, more voices, more reinforcements, more love, NOW.

And to those who have reached out to our family… The phone calls, the messages, the check-ins, the simple “thinking of you” gifts… more than anything the EMPATHY… It has all kept me going, kept me fighting, kept me believing more than I can ever say. You are my angels. I thank you and I love you.

CHD & Mental Health Awareness

I don’t know what button was pushed, but suddenly instead of 2 nurses in the room there were MANY. Lydia’s external pacemaker—the one in place while we waited to see if her heart rhythm would normalize after open heart surgery or if a permanent pacemaker would have to be placed—was malfunctioning. A lead connecting the external device directly to her heart had completely severed in a fluke equipment failure. We had anxiously been assessing her stressed symptoms when we realized this. In that moment, the head nurse steel-eyed me as the room filled with people and a cart full of equipment and said, “Normally I would use anesthesia, but this is an emergency...” She then sewed a thick metal grounding wire into Lydia’s stomach while another nurse and I held my screaming 5 month old down. I was terrified. She was in incredible pain. I didn’t know any of these people and the situation was completely out of my control. One of her life-sustaining organs wasn’t working and neither was the equipment supposed to save her. It. Was. Hell.

I will never forget that day or those feelings. I thank God for every miracle that allows her to still be with me, today.

This is just one small example of what medical trauma looks like. In addition to facing the pain of diagnoses & surgeries, there are always desperate, unpredictable moments that crop up. These incidents are often accompanied by months+ of PTSD symptoms. I belong to several online support groups and one of the MOST COMMON requests I see in the local heart family group is “Where do we find a counselor? For my heart warrior. For their siblings. For our marriage. For me.” It is a staggering problem; one I know, personally. We are not doing enough to support these families.

I recently attended a lecture for heart parents in which a licensed therapist was asked point blank why there was not emotional support or counseling provided for parents of cardiac patients at our local children’s hospital (which serves about 5 states). She regretfully gave this heart-breaking answer: Counseling* is not provided to anyone who is not the direct patient because it is considered a “lost cost.”

In short, “Who pays for that?”

The answer is, especially when no support is provided, EVERYONE. Providing counseling to a five month old is pretty futile. All that baby wants is what she knows as security—Mom and Dad. And if they are falling apart? Well, good luck.

I cannot emphasize how desperate the need for emotional support for families of critically ill children is. Especially when some hospital stays last months and treatments are lifelong. The consequences for not providing this type of care affect the patient, the entire family, and society as a whole. The statistics for marriages in these households are not good. The statistics for the emotional well-being of patients long term are even worse. Medical trauma is real and when untreated wreaks havoc on patients, families, and communities, alike.

February is Heart Month & I felt this was the most important thing I could share. For every post you see about raising awareness for the physical treatment of CHDs (1 in 100 babies will have one), please consider the emotional battles fought, as well. The pain and consequences are real. We HAVE to do better.
I recently joined the board of a local nonprofit that provides support to heart patients and their families, including those who have lost family members to CHD. There is absolutely a supportive, knowledgeable community there for families fighting CHD! But there are things everyone else can do to help, too. Speak up. Normalize mental health practices & therapies. Donate time/money to support groups or emotional wellness programs. Recognize that physical & mental health must be mutually treated. Listen to a hurting friend. WE CAN DO MORE. It matters.

If you are struggling, please don’t do it alone. Ask for help. It’s a good thing. 🙏🏻💛

*Our hospital does provide social workers, however they are severely understaffed. We heard there was someone assigned to the cardiac ICU, but Lydia’s nurses were the ones who (on top of their medical assignments) completed the tasks our SW would normally do such as securing overnight hospital accommodations for us and offering limited (but treasured) emotional support.

World Down Syndrome Day 2019

What do you even say when someone comes into your life and completely changes everything—in the best way? I love you, Baby Girl. Thanks for helping me truly see. 💛 
#misslydiefaith #theluckyfew#worlddownsyndromeday2019

Remembering

This picture will always mean the world to me. This was the day I decided to take Lydia’s newborn pictures. I had anticipated that day for so long. My baby girl—dressed up and presented to the world as only her mother could show her. But once she arrived, I didn’t know how to do it. I couldn’t do it... for days. Because we mothers are protective, and I was afraid—so afraid of what the world would say. How they would stare. Whether or not we were forever “different,” and what that would mean. 
But on this day, I faced those fears (literally) and took a full frontal portrait of my baby. I included the wires and the oxygen on purpose because, while they didn’t define her, they were part of our story. I wrapped her in a gorgeous blanket that I had purchased from the hospital gift shop after she was born—a gift for THIS baby, not the one I thought was coming. And I shot that portrait head on—with any Down syndrome markers in full view. Then I shared it with the world. No apologies required. I love this portrait. I will always love it. I love it for what it took and how true to life it is. And I especially love it because that is my baby. Although I took a lot of pictures, I wish I had taken a million more, because you know what? I will never have another one like her. Those almond shaped eyes that originally scared me to death are incredibly beautiful to me now. I want to capture every detail. Amazingly enough, when looking at pictures of other babies, I sometimes genuinely struggle now to distinguish whether they have Down syndrome or not. Because I have a direct window now to the person, not the diagnosis. And gosh she’s amazing, that beautiful girl and the new eyes she’s given me. I cannot get enough. 😍 
#misslydiefaith #theluckyfew#worlddownsyndromeday2019

The Lydia Necklace

The incredible company @wellscooperative honors a lot of amazing people and causes with their jewelry. In celebration of World Down Syndrome Day this month, they asked if they could name a piece after Lydia! 😭😭💙💛 We feel so honored and her necklace is perfect for her! We love this girl so much and are so proud of her. If you’re into pretty jewelry or inclusion or good causes, please consider getting yourself a Lydia necklace. And if someone asks you about it feel free to share that different is beautiful!!! May it always make you smile & remind you that good things can come from unexpected circumstances. ❤️
Here’s something I wrote in collaboration with Wells for the necklace release: After Lydia’s birth diagnosis, I was overwhelmed by fear—a desperate fear of two words, “Down Syndrome,” and all the stereotypes that came with them. I thought then that Down Syndrome meant “limits” and “loneliness” and “loss.” As I sat in the hospital holding my new baby, however, I began to know what WAS instead of just what I thought would be. And what was—the actual reality gazing out at me from deep blue innocent eyes—wasn’t scary at all. It was new and unexpected, but it was also deep and rich and enveloping. It was perspective. It was love. It was growth and opportunities I had never dreamed of. And ultimately, it was peace. This necklace reminds me of the hundreds of things I have felt and learned while staring into Lydia’s beautiful blue eyes. Life with my daughter has taught me to see and love more completely and authentically than I ever have before. It is truly beautiful and a gift.

Nap Time

Me after our back-to-back-to-back birthday month 😅