The Good, the Hard & the Beautiful: Big Brother

October 26, 2026

The Good

One of the blessings in our lives right now is the elementary school Lucas attends.

He has the absolute best Adapted Learning Environment (ALE) teacher and aides. I will definitely be writing more about them in future posts because they deserve an entire blog of their own. They have created such a loving and supportive environment for their students.

One of the things I love most about the ALE classroom is that they regularly invite older students, called Circle of Friends, to come spend time with the ALE kids. Sometimes they read stories, sometimes they help with work, and sometimes they simply sit and talk. It is a small gesture that creates meaningful connections.

Through the Circle of Friends program, Lucas has developed a sense of confidence and belonging. These friends regularly make a point to get his attention, say hello, and check in on him. Those moments remind him that he is an important part of the school community.

Keep that in mind as I get to today's story.

Last Friday was the 5th Grade Pillar Ceremony. Each grade level puts on a program with skits and songs that focus on the week's character pillar. As the students walked onto the stage and found their spots on the risers, Lucas immediately started scanning the audience for Damon and me.

It didn't take him long.

The moment he spotted us, he flashed a smile and gave us a little wave. The entire performance was precious. Watching him up there is one of those simple parent moments that becomes a memory you'll cherish forever.

After the ceremony, the students were allowed to come down and take pictures with their families before heading back to class. And just when my heart was already so full from watching the performance, I got the icing on the cake.

One of the Circle of Friends students, Maddie, was there from middle school to watch her little brother perform. She came over specifically to say hi to Lucas. Of course, I had to snap a picture to mark the moment.

It was such a small gesture, but it made me smile.

Moments like that may seem small, but they mean so much. They are reminders that kindness matters. Inclusion matters. Taking the time to see and value someone matters.

As we begin thinking about middle school and all of the unknowns that come with the future, I find myself especially grateful for a school that has worked so hard to create a culture of acceptance and compassion. The teachers, staff, and students have shown Lucas that he belongs.

And for a parent of a child with disabilities, there is incredible peace in knowing that when you send your child off to school each morning, he is walking into a place where he is known, welcomed, and loved.

That is the good this week.

The Hard

This week I've been feeling the weight of raising two sons who need me in very different ways. Sometimes I wonder if I pour so much of myself into raising Lucas that Easton gets left out at times.

Because of this feeling, I simply just asked Easton (now 16) - "Do you ever wish your brother was more like you?"

Like most teenage boys, he's a man of very few words (or maybe even fewer I understand-"no cap", right?). Long conversations usually become short answers, and if I get more than a sentence, I consider it a win.

He thought about it for a second and said,

"Kind of. I mean, I wish he could play me in basketball."

That's all he said. Just one sentence. But it hit me harder than a hundred words ever could. Because basketball is Easton's favorite thing in the world. It's where he's happiest. It's what he talks about, thinks about, and wants to do every chance he gets.

Of all the things he could have wished for, he didn't talk about having an easier life. He didn't talk about the challenges that come with having a special needs sibling.

He just wanted the chance to go one-on-one with his brother in the driveway.

And suddenly I found myself grieving something I don't often allow myself to grieve.

Not because I wish Lucas was different. I don't. I love him exactly as he is. But there are moments when the reality of their different paths catches me off guard.

I'm raising one son who is learning how to leave me. And another son who may always need me.

One is learning to navigate the world on his own. The other may need help navigating it for the rest of his life.

As their mom, I live between those two realities every day. Easton is at that stage where he wants more independence, and truthfully, he should. He's learning how to make decisions, how to recover from mistakes, and how to build a life that doesn't revolve around Damon & I. (Now, if he could just remember to take out the trash, we'd really be making progress.) But in all seriousness, that's exactly what Damon and I have worked toward since the day he was born. We've spent sixteen years preparing him to fly.

So while I'm learning how to let go of one son, I'm also facing the reality that I may never fully let go of the other. Lucas will likely need me to help navigate parts of his world for the rest of my life. While most parents spend these years preparing for empty nests, I'm also thinking about guardianship, long-term care, and who will advocate for him when I'm no longer here. And honestly? That's a lot!

As a mom, I find myself standing in both places at once, celebrating milestones while quietly grieving the ones that may never come. Feeling pride, worry, hope, and exhaustion, sometimes all in the same moment. There isn't a parenting manual for balancing these two realities. Most days, I'm just doing my best to give each son what he needs while remembering that neither journey is better or worse, just different.

This week's "hard" isn't really hard. It's just heavy. It's the ache of loving two children fiercely and realizing that love will ask something different of me from each of them for the rest of my life. And if I'm being completely honest, some days I wonder if I'm getting any of it right.

So tonight, my prayer is simple:

God, give me the wisdom to know what each of them needs, the grace to give it, and the strength to love them both well. Amen.

The Beautiful

God was shining bright this week.

He seems to be pointing me toward one message over and over again:

Joy.

While sitting in a speech waiting room this week and scrolling TikTok, a Matthew McConaughey quote made me stop scrolling and write it down: "You will always have some sort of conflict going on in your life. You must learn how to enjoy life while still solving them. There is beauty in everything we experience. You just need to adjust your perception. You can either cry in the storm or dance in the rain."

I remember reading it and thinking, That sounds like it could be Scripture. Then I can just picture God standing back and saying,"Matthew has nothing on My words. Watch this."

My sister recently gave me a book for my birthday, Moments of Joy: 90 Days of Encouragement for Parents of Children with Special Needs. She wrote the sweetest message in it about how she is here for me and how God is holding me through it all.

Honestly, that's where I stopped reading. I smiled, read her note, put the book on my desk, and didn't pick it back up until this week.

Then after Matthew's message, I spotted the book and thought, Joy. That's what I need right now.

So I opened it.

Day 1 was Philippians 4:13:

"I can do all this through Him who gives me strength."

The devotional was all about remembering that I am stronger than I realize. Then, because apparently I spend half my life in waiting rooms and pickup lines, I found myself scrolling again and came across Esther 4:14: "Perhaps you were created for such a time as this." (It was actually on a cute shirt. I may have to buy it.)

And do you know what shone through all of this? There were 4s everywhere. If you've read last week's Thread (NYC Family Vacation with FSHD), you know I notice those things. Every. Single. Time.

By now, God is probably laughing because He knows exactly what gets my attention.

A bottle of red wine or a 4. 🍷4️⃣

This week, He chose the 4s.

He opened my ears to Matthew's quote, opened a devotional about joy, pointed me to Philippians 4:13, and finished it off with Esther 4:14 on a t-shirt telling me I was made for this.

Maybe that's the beautiful lesson in all of it.

I wasn't chosen to be Easton's mom by accident.

I wasn't chosen to be Lucas's mom by accident.

And despite all the worries, questions, responsibilities, and unknowns that come with both of those roles, God knew exactly what He was doing.

Maybe He's reminding me that joy isn't something I find after the hard parts are over. Maybe joy is something I choose right in the middle of them.

Because sometimes the rain doesn't stop.

But sometimes God teaches us how to dance in it.

And this week, I kept hearing the same message: joy.

Not happiness, because happiness comes and goes with circumstances. Joy. The kind our Pastor, Ed Newton, describes as something deeper, rooted not in what's happening around us but in the One who walks through it with us. Happiness depends on circumstances, but joy comes from knowing who you are and whose you are.

The challenges haven't disappeared. FSHD is still here. The questions about the future are still there.

But so is God.

And maybe that's what joy really is: choosing to see His goodness in the middle of it all.