Sit with me while I overcome that IEP. It might take a minute. While I rock back and forth and ask the same old worrisome questions: “Is it enough? Are we enough?” Enough therapy. Enough support. Enough advocacy. Enough pushback. Enough movement in the right direction. Enough seeing her potential. Enough.
“Is it that different,” I wonder, “This same old sickness that’s plagued me my whole life?” Except now the targets have moved. The subjects have changed. It’s not me we’re talking about, with my academics and worthiness and social rankings… it’s her. And haven’t we learned this lesson already? To throw out the damn measuring sticks they (society) keep thrusting in our faces and just keep offering the only thing we wanted and needed all along? Love?
Here’s some more, dear heart. Try to remember. Let it be enough.
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.
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.
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.
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. ❤️♥️❤️
