The Extraordinary Exceptional Kids of Wilkes

03/29/2024

If everyone would please take a moment and say extra special prayers for a special little girl named Asphyn and her family, please 🙏 wrap your light around them and work your miracle 🤍

11/20/2021

Special needs parenting changes us entirely. There is no denying that. Because the truth is -- the first few years are going to pull you so far away from who you used to be that you won't even recognize yourself anymore.

You'll find yourself looking in a mirror, bags under your eyes, either heavier, or skinnier, and not recognize yourself. It looks and feels like you've aged a hundred years. Or maybe you are standing in a crowded room, feeling entirely isolated and alone, and wonder if you are invisible. You'll wonder how your world can be so different. How you can relate anymore.

It will challenge everything you know. You will question yourself. Your purpose. Your strength. You will wonder why. And how. Why my child? And not theirs.

It will challenge your marriage. Your health. The way you parent your other children. Even your decision to have more babies. Your career and finances. Relationships. And not just with people. With God too.

You will experience the greatest love on this earth. And simultaneously wonder how it can be so hard all the time. You'll get shamed for being sad. And for missing the almosts and the 'should be's.'

You'll see the unbelievable beauty that this world holds too. Almost like you've been granted access to a special club. One full of forever hugs, This Little Piggy, Santa and smiles. You'll celebrate milestones long after you should. And it will be amazing no matter when it happens.

You also see unbelievable cruelty. And it will take your breath away the first time it happens to you. To your child. You think you'll be prepared. That you'll come back with some witty, snappy comment. Only, you probably won't. You will try and shield them from evil. And then spend the next few sleepless nights wondering how you can live forever and change the world at the same time.

At first you'll feel like it's a race against time. Against their diagnosis. You'll do everything you possibly can. Your hope will be challenged. Then you'll find acceptance and realistic hope. Then you'll want time to stop. You'll want to keep their bodies small. Because the world is kinder to children.

You’ll have days where you swear you can’t do it anymore. Where you are certain it will never get any easier. That it’s going to be this challenging forever. You’ll almost be unable to picture a world where you stand still. Where you don’t have to fight for basic rights, inclusion and easy.

And then you will have the most unbelievable moments. A moment that makes everything worthwhile. Your child will shatter a goal, a milestone, something they have worked on for years. And you will know it’s going to be okay. Because you believe in this tiny human and know that they are worthy and capable and amazing.

You will live and breathe hope and acceptance and kindness. And you will be sewn together with strength and determination.

Yes, special needs parenting changes everything. It turns you inside out and upside down. But here is the secret that you have to learn on your own. It also puts you back together as the person you were meant to be.

That's the part that makes us lucky.

💜

Glimpses of the Great moments and the hardest moments all part of loving a very special guy 🥰

05/04/2021

💜

Don’t tell me I’m special.

I know it’s a well intended thing to say—that special needs kids are given to special moms—but it’s also a lie.

I am no more special than you.

I’m just a mother, like any other, who keeps showing up for her kids.

The only difference is sometimes it’s harder for me to do that in a world not designed for differences.

So, no, I don’t need to be called special.

I just need support.

I need friends who understand weeks may go by before you hear from me. It’s not because I don’t love you or want to be included, it’s because even typing a text requires energy I don’t have. Please keep inviting me and loving me from afar. When I get my footing, I will return.

I need a spouse who understands that sometimes the last thing on my list is intimacy. I’ve been overworked and over touched all day. I’ve battled IEP’s, made meals no one ate, and drafted wills should the worst happen. Sometimes I need space to remember I am a woman and not just a mom who manages it all.

I need an employer who understands that while I value my job, my role as a mother will always be the most important. I need a workplace that understands at any given moment my child may have a breakdown or medical need so severe they’re asked to leave school. I can’t plan for these things, so please don’t fire me for putting my family first.

I need insurance companies to know that when they hit deny on a piece of paper it affects a person. That unchecking a box is the difference between a child learning to eat, walk, and talk.

I need a church who creates space for families who don’t look like everyone else, and parks that put in ramps, and small businesses that have sensory-sensitive hours.

You see, I don’t need medals or awards or accolades—I’m not doing anything more remarkable than any other mom. Hard work is relative, after all.

But what I do need is a community. People and places that don’t pat me on the back and send me away, but get on their knees and trudge through special needs parenting right along with me.

Because that kind of support would be something special indeed.

04/01/2021

Great idea for all the kiddos that need a little extra help 🥰💜🤩💚

"Great idea for children with mobility challenges so they can participate in Easter egg hunts easier and remain in wheelchairs, gait trainers, and walkers."

Want to be featured? Submit your own story here: https://www.lovewhatmatters.com/submissions/



Credit: Noah's Miracle

03/24/2021

💜🖤💚

03/02/2021

❤️♥️💙💜🖤💛💚🧡🤍

I see you taking your kid to therapy while your friends take their kids to football or ballet.

I see you sneak out of the conversation when all your friends boast about achievements and exam notes.

I see you juggle events and meetings.

I see you sitting on the computer for hours investigating what your child needs.

I see you make a bad face when people complain about what looks like nonsense.

I see you disappear little by little but you keep going beyond for your family.

I see you pull strength from weakness with a force you didn't even dream you had.

I see you showing respect for teachers, therapists and medical professionals who help your child and help you.

Watching you wake up early in the morning to do it all again after another chaotic night.

I see you when you're on the edge of the precipice struggling to live.

I know you feel invisible, like no one notices.
But I want you to know that I see you.

I see you push forward always. I see you choose to do everything you can to give your child the best care at home, school, therapy and the doctors.
What you do matters. It's worth the struggle.

On those days when you wonder if you can make it one more minute, I want you to know I see you.

I want you to know that you are beautiful.
I want you to know it's worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it.

And in those days when you see an improvement, those moments when hard work has its reward, and you can taste success, I'll see you then too.
And I'm proud of you.

Whatever day today.....you're doing it right.

And I see you. ❤

✒ Alethea Mshar
📷 John Walker / Flickr

03/01/2021

For the love of 🏀 Ball 🥰🏀