The change in routine, the expectations, & the unpredictability of Christmas chaos give Cale SO much anxiety. We prep, we plan, we structure, we provide alternatives ... he just can’t do it.
When you’re stressy and agressy then Christmas gets kinda messy.
Things were different this year though.
We weren’t together. And though he did panic with anticipation in the days leading up to it, he called Christmas morning and couldn’t have been sweeter.
He communicated that not knowing what he was getting was creating stress and he needed us to tell him. So we did. We told him his gifts over the phone.
No magic.
No surprises.
No hustle and bustle.
And we were met with “Thank you, Mom and Dad. I feel better. I love you so much. Merry Christmas and goodbye.”
Tonight we are together, just the four of us, opening a few small things alone in a dark, quiet hotel room. He couldn’t be happier.
It might not look like everyone else’s Christmas. It might not look like what *we* ever imagined even. I wont pretend we haven’t grieved that. But with no magic ... and no chaos... our son found joy and peace in Christmas, and isn’t that the point anyway?
Social media, you are one double headed beast. God bless my passive-aggressive bones and forgive me for vague-booking, but we can’t keep it all to ourselves and expect grace at the same time.
We are struggling, friends. Trenches? No. We’ve been in the trenches. We are the wounded left behind in the war zone clinging for dear life. And we are fiesty little warriors.
I’m painfully aware that you can see it all over our faces. We are dropping the ball in pretty much all areas of life right now. Honestly, the balls have scattered and are bouncing away aimlessly.
There’s “regular” stress like broken dishwashers and washing machines, broken down cars and flat tires, sick kiddos who can’t tell you what’s wrong, unpaid travel fees, little boys in desperate need of a blood transfusion, unsettled IEPs, etc etc etc and I WISH those were the hard parts of life right now.
But on top of that, we are kind of literally fighting for our child’s LIFE. It’s taking 100% of our time and energy and we are hanging by a thread.
We are desperate- but praising. Empty- but fasting. It feels Ike every hour we alternate between determination and falling apart. Thankfully, we have people around to stitch us back together and tell us to keep going. Most of them walking right alongside us in any way they can ❤️
Our kids are SO easy to love, but paving a way for them in this messy world is HARD. Hard hard hard.
Occasionally, over the years, we’ve been met with “You asked for this.”
Yeah, we did.
We could, in theory, be a family of three. I could be working full-time so it wouldn’t be so easy to attack our finances. Our house could be quieter, our days could be less hectic, we could have hobbies in our spare time... we could have spare time!
But we asked for THIS.
We knew it came with challenges: advocacy, exhaustion, grit, guilt, shame, loss, grief. But I’m really not sure we could have ever prepared for these heartbreaks. (Theirs/ours.)
It also comes with wisdom, strength, faith, perseverance, perspective, acceptance, trust. And I’m really not sure we could have ever prepared for these miracles. (Theirs/ours.)
We asked for this. For them. And I’d do it a million times over.
I don’t know what tomorrow holds. LITERALLY NO IDEA WHAT WILL HAPPEN TOMORROW. I don’t know how or why or when. But God. I’m grateful I don't have to.
* I do know I was not given a spirit of fear, but of LOVE, POWER, & A SOUND MIND. * I do know it’s working for our good. Even if it looks different, even if it takes longer, even if it hurts. * I do know He will provide- a safe place to land, funds for His call, a hope for the future.
For the first year she was home, Anna Gray watched Signing Time and only Signing Time. Nothing else held her attention or interest. Then it was two years of Sesame Street. At age four, she made a hardcore switch to Doc McStuffins.
She’s sprinkled in a variety of options here and there lately but Doc is still her #1 gal. We’ve seen so.much.Doc. So many McStuffins. For a while, Anna Gray wore her stethoscope everywhere she went. Grocery, church, bath time, bedtime...
Recently, we were at an appointment for a sibling and AG tagged along. She brought her med bag and gave the endocrinologist a full check up- named every tool & used them correctly. She instructed the doctor to “take deep breaths” as she listened with her stethoscope. She promised “no hurts” from the otoscope, and pronounced her patient all better.
The specialist asked AG (she didn’t ask me... she spoke directly to the, albeit small, fully functioning human beside me) and asked if she wanted to be a doctor someday. After a “yes ma’am”, she looked at Anna Gray and said, “YOU CAN.”
It was so strikingly different from another experience we had. During an IEP meeting for her, a person (who, please note, does *not* work at her school) dismissed all of her reported strengths and said, “Well, she has Down syndrome so obviously she’ll just be in (CDC/Special Ed) all day.” When I argued that it wasn’t Anna Gray’s LRE (least restrictive environment- which she is legally entitled to) and explained the benefits of peer models and inclusive classrooms being best for ALL students, she remarked that AG “can’t even carry her own lunch tray”. She had never even met Anna Gray. Ever.
Despite the fact that there were a slew of Anna Gray experts in the room speaking to her ABILITIES, this person made big giant assumptions based on NOTHING but her diagnosis.
Can you imagine the way each of those experiences felt? Whether you happen to have an extra chromosome or not, can you imagine being told you CAN’T by a person who doesn’t know you? What that would do to a child, to a brain, to a heart?
Now imagine being told you CAN. What that would do to a child, a brain, a heart!
****Hot tip: ASSUME COMPETENCE.
Whether a person has Down syndrome, is on the autism spectrum, or is typically developing... assume they CAN. Then, if they need support/extra time/whatever to do it, help them get there.
AND WHILE WE’RE HERE (bc who knows if I’ll manage to get another post out this month 😬😬), let’s re-visit the “R” Word...
Twenty something years ago, it was unfortunately common slang. Not anymore. At this point, “retard” is lazy & HURTFUL. Scientifically, our girls are considered mentally retarded. Did you mean stupid when you said it? Because this kid speaks parts of four languages. Did you mean ugly when you made that face and called it ‘retarded’? Because she also has a modeling contract 🤔 And you better bet she can carry that dang lunch tray. Honestly, I’m done being nice about that. Get yourself a thesaurus and break the habit- you CAN! 😉 — When you know better, do better. —
Thank you & be kind is all. And listen ... if you don’t know our Annie Sunshine, the only assumption you should make is that YOU ARE MISSING OUT.
