Being A Special Needs Mom Is Like...
It’s been ten years.
This week, ten years ago, I was 20 weeks pregnant with my first baby and I found out through an amnio that she, with 99.9% certainty, had Down syndrome.
I will never, ever, ever forget that late September day.
Ten years since I entered the ultrasound room, face shining with excitement as we were going to find out—boy! or girl! (yes, I definitely wanted to know. I hate surprises!)
Ten years since I left that ultrasound room sobbing, The bottom dropped out of my world. Fear, shock, worry (the anger would come later).
Why God? Why would you give a medically complex baby with a life-long diagnosis to a couple who was doing everything they knew to honor and glorify you?
25 year old, healthy, secure in life, ready to TACKLE PARENTING.
Except….an extra chromosome? WHAT.
Looking back now, I can say with confidence that my life really started that day. I was just existing before that. Ten years ago this week, I started LIVING.
As Addison’s mother.
I feel that after ten years, I should have a boatload of wisdom to share. A pithy meme about parenting. A song and dance about special needs. A NICELY SUMMED UP experience wrapped in a pretty bow.
Except, I’ve got nothing.
Ten years, and what I’ve learned is that I know nothing.
I have cried deeply. Loved deeply. Laughed a lot. I have been ripped to shreds. And then stitched back together, stronger. Tougher. And yet…somehow….softer.
I have watched Addison navigate life first as a very sick infant, then a healthy but delayed toddler, then I woke up one day and she was a preschooler…then kindergartener….then grade schooler….and BAM. 4th grader and emerging big kid.
In February, her tenth birthday, that will be all about her.
But I get this week.
Because it’s been ten years.
I’ve been a special needs mom for ten years.
I get asked all the time what it’s like. So, so many layers to this.
Special needs parenting….how can I put this?
Here’s an analogy that sums it up best I can….roll with me here:
Special needs parenting is like showing up to a party and your kid is the LIFE OF THE PARTY…she’s laughing and dancing, not a care in the world. Complete strangers can’t help but smile as her contagious joy bounces around the room, changing hearts and moods just by her sheer magnetic happiness and absolutely ADORABLE smile. She dances her HEART OUT. And her friends crowd around her. And you are just having the BEST TIME. “That’s my girl!” you think proudly.
BUT then your nine-year-old superstar has a very public potty accident on the super beautiful white carpet. In front of her friends. A wet, sticky, splotchy mess that you try to scrub and the host assures you is fine, but it isn’t fine. And you are embarrassed for her. And embarrassed for you. And sad. Everyone says, “Oh it’s fine. It’s fine!” But you know, it probably isn’t fine. They’re just being super nice.
You desperately hold onto the glory of how she SHINED. And how loved she was. And how AMAZING she was and IS.
But you walk away from the party with your girl into the darkness (because you didn’t think you still needed to pack backup clothes!) and you watch everyone else in the brightly lit house still partying. It hurts.
But…you get to leave with the star who lights up the night all her own. Her face glows as she is so happy. She couldn’t care less about the potty accident. She’s not embarrassed at all.
But then you get to your car and she has a meltdown because….well, you aren’t sure why because you can’t understand her. “Say it a different way,” you ask, but even the new way you don’t understand. She gets frustrated. You’re frustrated. You’re standing in the dark with a half-naked child still smelling of pee as both of your frustration grows. Outside the party. Alone.
And then it starts to rain. Hard. And then she’s crying so hard her nose starts to bleed. And then she cries harder because she hates it when her nose bleeds. And she won’t get in the car because she’s too busy crying. And bleeding. So you get soaked as you attempt to reason with her to get IN the van and out of the rain.
You comfort and help her best you can but then, frozen in the moment, you briefly glance back up to the party where everyone else is sheltered inside the dry house. The lights are shining, festive music is playing, everyone is dancing and laughing and smiling while eating delicious cake and looking just so so happy. You look down at your sticky, hot-mess child as the rain pounds down on you and you can’t help but wonder….why can’t I be dancing and laughing and smiling still at the party? Why am I out here dealing with a meltdown? Why me?
A few tears of your own adds to the storm.
You see your friend with her nine-year-old, still partying. No potty accidents. They haven’t had one in 6 1/2 years. You see another friend with a 4-year-old, still at the party. A 4-year-old who communicates clearer than your 9-year-old and as a result, avoids these meltdowns completely. YOU’VE BEEN PARENTING FOR FIVE MORE YEARS THAN HER. But…less progress.
You try to push all of this out of your mind as you strain to lift your heavy nine-year-old into the van and buckle her (against all her objections) and then gently wipe her nose best you can.
It stings. You think about the wet spot on the carpet inside the beautiful house. The embarrassment presses down on you yet again and your face flushes in the darkness. This is hard.
As you walk over to the driver’s side, you suddenly and quite unexpectedly feel an extra whoosh of wind and rain hitting your leg and as you reach a hand back to investigate, you realize that as you bent down to lift your heavy, heavy child into her seat (that is way too large for you to still be lifting), you popped out a large row of stitches in the back of your pants and now you’re open-breezing it to the world. .
You quickly rush to sit in the driver’s seat and after a quick second, you start to laugh. Hysterically. You laugh hysterically at your open pants and how ridiculous you must have looked struggling to lift a sixty-pound crying, bleeding octopus up into her seat as the back of your pants just had ENOUGH and POPPED OPEN….. and just oh my word that night escalated quickly!!!
You laugh because it is so much better than crying.
You get your baby home, bathe her in a frothing bubble bath fit for a queen, brush her beautiful golden hair, help her clean her teeth, tuck her into her soft bed, and she smiles up at you.
“Sing me a song,” she requests sweetly. And you do. Her soul-filled blue eyes light up and laughter bubbles from deep inside her, and her smile is so captivating, so enthralling, so joy-filled that it wraps around your heart. She reaches out to hug you and as you lean into her, she melts against you. Her warm skin is so soft against your cheek. “I love you,” she says. “You’re the best mommy.”
In that moment, you know that you wouldn’t want to be anywhere else. You wouldn’t want to have any other child. This life with her, it’s worth it. Every last second is worth it. It’s not always easy, and yes, sometimes you have to leave the party early and you feel isolated and misunderstood and sad.
But you…you get her.
And at the end of the day, that’s all that matters.
This deep connection to this amazing person…this is what life is all about and you feel like the luckiest mom in the whole entire world.
As you finally wrap up bedtime and sit down with your computer HOURS later, a news article flashes to the front of your screen. HUGE ACCIDENT. MULTIPLE FATALITIES. As you gasp and quickly scan, you realize this accident happened right on your route home from the party. Right at the time you WERE SUPPOSED to be leaving the party.
But you left early. Because of your girl.
And you realize that in every detail of life with her, you are right where you are supposed to be….at the exact right time. It’s all how it was meant to be. Hard, messy, unclear, frustrating…maybe. Perfectly designed? Yes.
And even as you were drowning in the “hard”, God was orchestrating something much bigger in that same moment….something that He meant for good.
And that….that is (the longest analogy EVER) being a special needs mom. Right there. The hard, the miraculous, the amazing, the smiles, the laughter, the tears, the bloodshed….the FEELINGS all wrapped up together.
And YES, this is a made-up story, and I know the “WHY” doesn’t always appear to us (in this life). But I believe in a big God who has orchestrated this entire mess we call life.
Right down to that ultrasound 10 years ago and a naive first-time mom who wasn’t expecting an extra chromosome.
And not only does He have a reason for every step of this, but He provides the strength to make it through. The ability to laugh at the ridiculousness of certain situations. And the wisdom to look back on yesterday and see the good.
But most of all….He created our babies. Every last one of them down to every last detail. In perfection according to His plan.
Ten years later I know nothing….but I am extremely grateful. Both for the journey that I am on as special needs mom but also…for Addison.
She is such a gift to our family.
Always easy? No. But the best things in life rarely are. (p.s. my other 4 kids aren’t always easy either #parenthood)
The ability to learn and grow through hard times is a gift all in itself.
But in the same breath, one of the biggest things I’ve learned is that this journey of being Addison’s mom isn’t about me at all. It’s about her. Her triumphs. Her journey. HER perspective. I’ve been called to help equip her to do this thing called life.
I consider this calling my highest honor in life. I haven’t always done this perfectly. Or even well. But I keep showing up and trying again. Because she…every last part of her is worth it.
It’s been ten years.
And it wouldn’t trade them….or my girl Addison…for the world.