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.
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.
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 💛
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.