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. ❤️

Presence

“Hurry, hurry, drive the fire truck,
Hurry, hurry, drive the fire truck,
Hurry, hurry, drive the fire truck,
Ding ding ding ding ding!”

It’s a children’s song we learned from Ms. Rachel—one of Lydia’s favorites—but also semi-reflective of certain states of mind? Rushed… chaotic… random alarms at the end… 😆

I was in fire truck mode on the way to school drop off today, “Hurry, hurry!!” lost deep in my own thoughts on a random subject. Lydia was chattering away in her own jibberish like she does in the seat behind me. I wasn’t paying any attention at all, until I caught the slightest giggle & pause.

“Kaboo!” Giggle.

‘Kaboo’ is Lydia’s shortened version of “peek-a-boo,” & I realized w/ a start, when I turned my head to see her face buried in her winter hood, that she was actively trying to play a game w/ me on the way to school.

Having no other words at her disposal such as, “Hey Mom, look at me!” like a typical 5 year old would use, or “Mom, I need you,” these giggly moments are bids for attention that she throws out. And I had almost missed it. Lost in translation & the weedy ways of my own distracted thoughts.

The magic of knowing someone like Lydia is that they teach you how to notice, how to feel, how to care—about all the subtle things & people that we normally miss.

Is the sun in her eyes? I better fix that, because she won’t tell me. Is she upset or acting out of character for some reason? Better play back the day & figure out why.

What makes her happy? Have you ever NOTICED how satisfying different textures are when you run them through your fingers or when you dangle a ribbon in the light just so? Or how soothing it is to be rocked in a swing under the trees for hours?

Does she love me? It’s in the way she plays w/ my hair, starts a game, whines when I’m in another room & the door is closed between us. Believes me when I tell her a procedure might hurt but I will be there & things will be alright.

Little things. Little, little, things that contain worlds of significance. Teaching me compassion, teaching me joy, teaching me presence one moment at a time.

Disability, Cuteness, and Authenticity

Disability is not cute; that’s where we get it wrong. Too often, people try to capitalize on disability and call that advocacy. It’s easy to do—so many times moments with the disabled cut straight to our hearts and show us something poignantly real about ourselves. If not handled carefully, this can snowball into a quick-fix trivialization of an entire population; or in today’s content-hungry culture, a steady stream of carefully-curated feel-good dopamine hits. I’ll say it again: disability is not cute. Disability is AUTHENTIC.

[Edit: I’m talking in broad terms here, about society as a whole, not any specific person or account. I have seen many clips published by any number of companies or accounts go viral featuring individuals with DS and wondered why. I have had many people tell me my daughter is so cute (and she is) but then proceed to do tasks FOR her, and then wondered if they see her as MORE than cute.]

It’s scary as a parent-advocate to walk the line between wanting to portray your child in the best light to a society who, for the most part, is blind or has limited experience with the true gifts & positive contributions this community has to offer, while also needing to be honest about the things that are hard—because this too is advocating and necessary to bring about change.

I am learning to stand in the in between. To witness the dualities of life. And to represent it fairly. Truthfully, I don’t know if the internet is ready for that. But I know that mothers are. Moms have long known that love and struggle walk hand in hand. Light contains the full spectrum of colors—some of which our eyes can’t even perceive. Truth and life are like that, too: dualistic, full-spectrum, exquisite.

Authentic. But not cute. And that’s ok.

Permission to be real is granted here.

Shine On

She was still brand new. It was just days, maybe a few weeks, from our life-changing dual birth diagnoses of DS and congenital heart disease, and I had not yet recovered. Definitely not from the birth, physically, though I was barely conscious of that; but it was the birth trauma and demanding medical needs of my newborn that had me reeling. What would this mean for us and the rest of our lives? I had no idea. Everything at the moment was medical tubes, monitoring devices, doctors’ appointments, and fear.
I cried a lot. I couldn’t answer texts. I crawled the internet looking for answers and hope like I was dying of thirst in the desert. And I kind of was—that’s how thin my knowledge was at the beginning of this.
I remember so clearly the first flame of hope. I had read a lot by then—devoured blogs and books and pamphlets in record time. But what broke through—what really broke through—was so simple. It was a video clip of a sister with a guitar, sitting on the floor in a hall, singing casually but so sweetly, “You Are My Sunshine,” with her baby brother who had Down Syndrome. Her voice was beautiful and clear. Her behavior was natural, as if they did this every day. “You are my sunshine, my only sunshine, you make me…” She paused in her singing and waited for him to sing back, which he did: “Hap-py!” I bawled. And then I knew: There was hope.
Today, on winter solstice, that memory was buried in the past when I walked into Lydia’s room. She greeted me with her customary, “Hiiiiiii!” which always makes me grin. As I helped her change into her clothes for the day, I asked if she wanted to sing sun songs? As I started to sing You Are My Sunshine, I thought about her radiant light, and it all came back. Eventually I stopped singing, but Lydia continued, all the best parts ringing out clearly: “happy,” “love you,” “sunshine.”
My heart almost burst. It was the darkest of dark nights, but oh what a radiant sunshine was born. Let her shine, let her shine, let her shine.

Run Towards that Light!

I drove away from school drop off today crying. I got to watch Lydia greet her favorite aide with gigantic smiles and waving arms and watch that woman’s heart light up in response. I then saw Lydia turn around and watch her classmates get off the bus and she broke out in an ecstatic high-stepping happy dance at the sight of them. Her joy was overwhelming and infectious and uplifting. And this was after we had driven to school singing Ruldoph the Red Nose Reindeer, laughing together (“ho ho ho!”).

In my quiet car alone, my misty eyes full, I poured out my heart to God, thanking Him for letting me keep this girl. For letting me experience HER. For letting me know the full unrestrained beauty of Down Syndrome & “special needs.” I remember how much I feared it; how much I misunderstood. If you have ever worried about having a child with Down Syndrome—please don’t. I won’t say it’s easy, but I will tell you what it’s like. If you’ve ever seen a movie montage (think the movie The Giver) about the full spectrum of the human experience played out in its upmost cinematic form—the highs, the lows, the high resolution, wide-angle, full color, surround sound, all-in, rock your soul essence of life portrayed before your eyes; the kind that leaves you breathless & grateful to be alive to just learn and love and experience it all…

It’s like that.

We should be running TOWARDS these beacons of light, not away from them.

God bless the extra chromosomes. 💛

Sacred Conversations

This week… has been a week. In preparation—preparation, mind you—for the upcoming IEP, I have filled out 12 behavioral surveys, conducted two phone calls with therapists, and met with the school principal. Let’s not count the emails or times I’ve opened the Calm app 🤪 I do finally feel like we’re making some headway, however. Finally. 🙏🏻 This sweet child whose short edu has been plagued by pandemic and spotty Zoom therapies 🙄 and health issues and who by KINDERGARTEN has already attended 3 schools. (Because that’s what they do in this state for special ed kids.) For the FIRST TIME since she was born, this Mama is feeling like, “HEY. Let’s get these ducks in a row!!” And maybe the scraggly little ducks are trying. We’re trying. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

Anywho. Sacred conversations. They pop up sometimes. Always when you least expect it, and I got one today, sitting in my pajamas on my bed. Miss Lydia wandered in, climbed up, and sat on my lap. I stared into her eyes, half hidden by her adorable strawberry bangs, and thought, “You are worth it. This whole crazy week.”
“Comb hair??” She asked.
It is one of her very few verbal requests. Count them on two hands few. She doesn’t even say my name, but she will ask to spend time with me—just the two of us, and this is how she does it: “Comb hair?”
“Of course!!” I say immediately, knowing this. I want to snuggle with you too! Then, seeing her pause and look around in frustration, “Oh! Let me go get a brush!”
“Go get brush,” she repeats, slowly, staggeringly, but knowingly.
I freeze, halfway to the bathroom. Because this is monumental. Three words. Together. That I’ve never heard before.
“Yes. I’ll get the brush,” I repeat, in awe. And I do. Then I sit back on the bed with my girl on my lap as she lovingly combs my hair before laying her head on my shoulder for a sweet hug.
“Worth it. Forever and ever and ever worth it.” I think.
She is coming. She is growing. She will get there. We will never stop.

Stories

As a senior in high school, when asked why English matters, I wrote “Everyone has a story and something valuable to share with the world.” This intense belief became a guiding light in my life as I chose my career: English teaching. I recognized the power of writing and expression to unleash personal stories, and I wanted to help empower others to share what they had with the world. Communication has always been very important to me. Fast forward many years, and then there was Lydia. She has managed to rearrange & expand my perspective on all my core beliefs, including this one. Truthfully, my heart has ached over how hard spoken language is for her. But there has NEVER been a moment in her life when we have not communicated. She and I share a unique bond that transcends words & I believe time. Some of my most sacred moments as a mother involve “talking” WITH Lydia through difficult, even heartbreaking struggles. The bond is so real that even when she was a 5 month old in the hospital after her surgery, doctors commented on it. WE just ARE. 💛 And thus I learned that “communication” can mean many things, and is a layered concept. I long for words. I long for HER words. And I believe they will come in her own time. An update: Lydie is “nonverbal” in that she understands many words but volunteers few. She will ask to “eat” or for “water” or “toy” or a few other single-word requests if highly motivated, but that’s it. Sometimes she says “bye!” or echoes “love you!” 🥹 She knows many signs, and many SONGS. Music is our biggest key—she memorizes well and will sing to herself often. Lots of times it’s unintelligible, but we first started catching melodies, and now phrases. We play Taylor Swift & Miss Rachel constantly for these reasons. She knows her ABCs & their sounds, but the majority of her sweet classmates are also nonverbal & we are trying to get her in an environment that will better help her speech development. It’s a tricky world and we are always learning. We love her so much. She has taught me to LISTEN with my eyes, my body, my ears, and my whole heart. Someday those words will come. Her story, however it’s written, is worthy.

The Birth

Of all the parts of that day, what stands out to me most—what comes echoing down the halls of time thundering through my soul too threatening to be ignored—is the silence.

She was born into silence.

There were no cooing and chatty nurses, like those who had wrapped and cuddled my earlier babies. There was no smiling, laughing doctor greeting her with open arms.

There was silence. There was dismissiveness. There was a curt, “The baby is in distress.” There were hushed whispers and turned shoulders. Closed circles. Averted eyes.

There was immediate recognition and desperate glances. Gripping fear and searching faces. Words—a diagnosis that I KNEW was ours, but I COULD NOT SAY out loud. For days. Because neither could they.

They taught me fear and shame in a matter of seconds. Instants that burn in me still. Both in pain… and in purpose.

Because as surely as I knew what “it” was, then, I know who SHE is, now. And I wouldn’t trade her for the world.

I wish I could go back. To that mother that was me being born by fire in that delivery room. I wish I could hold her hand like she deserved and look her in the eyes and labor with her through that transition into Holy Advocacy…

I wish I could be the Voice in the room that cleft the Silence.

A voice to leave it bruised and bloody on the floor, powerless to wield its painful lies, again.

A voice of truth, and encouragement, and hope, and promise.

A disabled child’s mother’s first cry.

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.