Special Needs Supermoms, Houston, TX, Houston, TX (2026)

05/17/2026

His name is Elijah.

He had just turned 10 years old when he returned to Allah SWT this week. He was the son of Marisa, a fellow special needs mama in our community, and his daddy who loved him with everything they had.

I never met Elijah in person. But I knew him through his mama. She and I had quiet conversations over the past year about motherhood, about medically complex children, about faith. About what it means to raise a child whose body needs more than the world is built to give. What gives me peace tonight is knowing that Elijah got to know Allah SWT before he returned to Him.

That is no small thing. That is everything.

Marisa shared these photos with me herself and asked me to share them with you. Look at him. Look at the way he was held. The way he was looked at. The way wildflowers ended up in his small hands on someone’s lap. The way his mama leaned in close to him in every single frame. This was a boy who was loved every single second of his life.

Our Prophet ﷺ told us that the children we lose become birds in Jannah. Free. Laughing. Running. Breathing deeply. Speaking every beautiful thought their eyes always carried.

Elijah is one of those birds now. And insha’Allah, his sweet mama will meet him at the gates one day.

Marisa, sister. You mothered Elijah extraordinarily. You loved him with a love that the angels are writing down. You are not alone tonight. The ummah is around you.

To everyone else: please give what you can. The fundraiser link is in my bio. Even a few dollars matters. Even sharing matters. Even just saying his name out loud matters.
Elijah.

A boy who was loved. A boy who is free. A boy whose name will be carried forward by everyone who sees this post today.
🤍

05/14/2026

I want to tell you about a Sunday night last week. The night I almost gave up on the entire healthcare system.

I was giving Isa his evening medications when I got to his last bottle and realized we were out. Just out. I had tried to refill it earlier in the week, but it was a controlled substance and too early for the system to allow it. I had asked the pharmacy technician to set a reminder. She said she couldn’t. I had a feeling I would forget. I did.

So there I was. Sunday evening. Out of one of my son’s anti-seizure medications. My local pharmacy closed at 6 PM. The 24-hour Walgreens in the next city over was my only hope.
What followed was almost four hours of being told no.

The first pharmacist refused to dispense a 72-hour emergency supply, even after I showed her the Texas Occupations Code in writing. She accused me of trying to get her in trouble. She told me “ You don’t have a pharmacy license.” She closed her window an hour before her shift ended to avoid speaking with me further. Even after her own manager came over and tried to reason with her.

I drove to a CVS a few blocks away. The second pharmacist told me to go back to Walgreens. Without even seriously, looking into my son‘s case, he based his decision on the unfair decision of the pharmacist at Walgreens. His words were that “if she couldn’t do anything, I probably can’t either.”

Then I overheard him. Discussing my son’s name, history, and medications with a pharmacy technician across the counter. Loud enough that I could hear it from across the store. That is a HIPAA violation, plain and simple.

In the meantime I was on the phone with the after-hours nurse line trying to reach the on-call doctor. When I finally got him on the phone at almost 1 in the morning, he told me “this is a bit much.” He told me my son could just skip a dose. He told me this was “becoming a pattern.” He compared this emergency to an unrelated call I had made three weeks ago to bridge an increase in seizure activity, the alternative to which would have been an ER visit. He asked if I needed social work involvement for “barriers to filling medications.”

05/10/2026

Last night I posted The Lanyard. My version. The mother’s side of the exchange.

This morning I want to give the other side a voice.

This is a letter from Isa. The one I imagine he would write to me if he could. The words I know he is saying every day, in a language no greeting card has ever known how to capture.

I shared this photo because of all the photos I have of him, this one says it best. Last November, on our umrah trip, Isa fell asleep being carried at the holiest place on earth. He could not walk the distance himself because he just had a seizure. So he was carried. And he closed his eyes and trusted, the way he has always trusted us.

That is what our children give us, mamas. They cannot say it. They may never say it. But they trust us with their whole bodies, their whole hearts, every single day.

I want every special needs mama reading this to know something. Our babies see us. They feel us. They know us. They know the smell of us, the sound of us, the safety of us. They know when we walk into the room before we say a word. They know when we are tired. They know when we are scared. They know.

And the love they cannot say with words, they say with everything else. The hand that reaches for ours. The body that calms when we hold it. The eyes that find ours across a room. The string handed to us a thousand times. These are the love letters. We just have to know how to read them.

If you spent years longing to hear “I love you, Mom” said the way you imagined, I hope today you can finally hear it the way it has been spoken to you all along.

Happy Mother’s Day, mama. To every one of you who has been loved in a quieter alphabet. May Allah SWT bless your hearts. May He ease your day. May He multiply the small, sacred love letters you have been receiving in the language of your own child.
🤍

aletterfromisa specialneedsfamily epilepsymom

05/10/2026

Growing up, one of my favorite poems was The Lanyard. If you have never read it, please find it tonight. It is about a boy who once made his mother a small craft at summer camp, and offered it to her in exchange for everything she had given him.

The poem rests on the unbearable gap between what mothers give and what they receive. And the way mothers somehow find that gap to be enough.

Tonight while I was sitting with Isa on the floor, he handed me his yellow sensory string. The one he holds when something in him needs to settle. The one he cannot leave the house without. The one that is twisted and coiled and soft from months of being in his small hands.

And it occurred to me. This is our version of the lanyard.
So I wrote my own. The special needs mom’s version. Because for us, the gap between what we give and what we receive is even wider. The lanyard is even smaller. And somehow, the love still pours and pours.

If you are a special needs mama heading into Mother’s Day with a complicated heart, this is for you. The cards we don’t get. The songs we don’t get sung. The “I love you, Mom” we don’t get said clearly. And the love letters we are receiving anyway, pressed into our hands a thousand times, in whatever language they have to give.

I pray for ease in the heart of every mother heading into tomorrow with grief, with longing, with love that has had to learn a new alphabet.

Inspired by The Lanyard, an iconic poem by Billy Collins. 🤍

specialneedsfamily epilepsymom

05/04/2026

If you’ve been a special needs parent for long enough, you know the silence I’m talking about.

The silence that comes after years of trying to explain. After years of being met with blank stares, well-meaning advice that doesn’t apply, comparisons to children who aren’t yours, and the eternal “I don’t know how you do it” that does absolutely nothing to actually help.

So one day, almost without realizing it, you stop.

You stop telling people how Isa really slept last night. You stop describing the medication change. You stop trying to convey what it’s like to live in a house that runs on seizure protocols and 24/7 supervision. You start saying “we’re good, alhamdulillah” and changing the subject. Not because you’re hiding. Because you’ve finally accepted that some experiences cannot be translated.

There’s a name for this in psychology. It’s called conservation of energy in chronic stress. When your nervous system is in survival mode for years on end, your brain literally starts deprioritizing emotional communication that doesn’t lead to relief. If explaining your day to someone who can’t help you costs you more than just keeping it to yourself, your brain stops volunteering it.

It’s not depression. It’s not avoidance. It’s protection.
And honestly? I’m tired today. I’ve been thinking about the stretch of posts I’ve shared this week. The day-in-the-life. The HCBS post. The seizures. The exhaustion. And I realized this is the most I’ve spoken in a long time. To anyone. Not because nothing else has been happening. Because most of it lives inside me where it’s safe.

If you’ve been carrying things you’ve stopped talking about, I just want you to know that the silence isn’t a flaw in you. It’s what happens when you’ve been at this for a while. When you’ve learned that some weights cannot be shared, only carried.

You nod. You smile. You keep going.

And every once in a while, when someone shows up who actually gets it, you exhale.

Maybe that’s why I keep showing up here. 🤍

05/03/2026

Tomorrow starts Teacher Appreciation Week, and I want to talk about a group of educators who don’t get nearly the attention they deserve.

Special needs teachers and paraprofessionals.

They show up every single day for kids whose needs are complex, whose days are unpredictable, whose progress is measured in inches instead of miles. They get peed on. They get hit. They administer medications. They communicate across language, cultural, and emotional barriers. And they do it with a level of patience that borders on saintly.

They are often underpaid, overworked, and underrecognized. Many spend their own money to make their classrooms work for our kids.

So here’s a list for the special needs parent who wants to show appreciation this week but doesn’t have the time, energy, or budget for a Pinterest basket. (Honestly, who does.)

The two most powerful gifts on this list don’t cost a thing. A heartfelt handwritten note from your family. And an email to her higher-ups, copying her in, telling them exactly what she’s doing for your child. The first one makes my son’s teacher cry every time. The second one made it all the way to the superintendent.

If you have the budget, gift cards to Target, Amazon, or her favorite coffee shop are practical and genuinely appreciated. Many teachers spend their own money on classroom supplies. Anything that lifts that burden matters.

If you really want to spoil her, a self-care gift card. A mani-pedi. A massage. Something for her, not her classroom. We are tired. So is she.

And please do not forget the paraprofessionals. They are the unsung heroes of the special education classroom. Show up for both.

Save this for the week. Tag a teacher who has loved your child like their own. And if you are a special needs teacher reading this, thank you. From every parent who has trusted you with their medically complex, beautiful, complicated child. We see you. 🤍

teacherappreciation specialeducation specialneedsparenting thankateacher

05/01/2026

People wonder what my day actually looks like. They see the carousels. They see the smile. They see the consistency. They wonder how I do it. So tonight I am going to take you with me through one day. Just one. Today’s.

My alarm goes off at 5:45. I hit snooze. By 5:55 I am dragging myself out of bed because if I don’t claim this hour now, I will not sit down again until midnight. I make wudu. I pray Fajr. I read Quran. I make my to-do list. I drink my Liquid IV. I take my medications. This is the only hour of the day that belongs only to me.

Isa wakes up at 6:15. There goes my hour.
He requires 24/7 supervision. I cannot let my guard down for a minute. He’s hungry, he’s thirsty, he needs a diaper change. I am packing lunches with one hand and getting Anas out of bed with the other. Today is rushed because Anas has an NJHS meeting in the morning and Isa has a field trip. We leave the house by 7:40. I never even got to make my coffee.

I drop Isa off and sit in the car for a minute. I take a deep breath. I feel like I already ran a marathon and the day has not technically started.

I make my way to work, stopping for a hot coffee, because moms aren’t crazy about the coffee. We’re just praying someone hands us a hot cup. Phone calls on the drive. Insurance. Doctors. Paperwork.

I love my job. I am genuinely lucky. The flexibility, the people, the work. Time flies. I leave in time for school pickup.

Isa is wiped from his field trip. The pickup line is its own workout, redirecting him constantly, keeping his hands off the new car. He broke a window shade yesterday. My car is two weeks old. Today I got lucky. Anas had something after school, so I only had to do one pickup before going home.

I get home and start putting things away. Isa quietly takes his clothes off and urinates on the bed. I just washed those sheets yesterday. So my one hour break becomes laundry, plus chasing him up and down the stairs every 60 seconds because his current obsession is going into Anas’s room.

04/29/2026

The Secretary of Health and Human Services called families like mine “fraud” this month.

On April 16, RFK Jr. testified before Congress and called Medicaid programs that pay family caregivers “rife with fraud.” He said we’re being paid for tasks we “used to do as family members for free.” And every special needs parent in this country flinched.

Let me tell you what those tasks actually look like.
They look like administering seizure rescue medications in the middle of the night. Tube feedings. Suctioning. Transferring an adult-sized child who can’t walk. Repositioning a body every two hours to prevent bedsores. 24/7 monitoring of a child who could stop breathing. Behavioral support for a child who can hurt themselves. Bathing, dressing, toileting another human being for the rest of their life.

This is not “checking on grandma.” This is around-the-clock medical work that, if a stranger did it, would cost the state hundreds of thousands of dollars a year per family.

And here is what makes me genuinely angry: most special needs families I know are not getting enough support. We fight our insurance for every medication. We sit on waitlists for years. We pay out of pocket for therapies our kids desperately need. We leave careers we worked decades to build because no agency can or will provide the level of care our children require.

And now we’re being called the fraud.

Are there inefficiencies in HCBS? Sure. There are inefficiencies in every government program.

Every. Single. One. The answer is not to gut a program 8 million Americans depend on. The answer is to fix the inefficiencies. Audit them. Improve oversight. Don’t let a bad apple destroy the orchard.

Continued in comments >

04/29/2026

Tell me you’re a special needs mama without telling me. 😅

If you have ever been on hold with the after-hours nurse line, listening to the same screening questions you have answered approximately 4,000 times, while your child is having a medical event in the next room, while you are also doing online pre-registration for tomorrow’s appointment with one hand because you forgot to do it earlier, and while your tea has gone cold for the third time today…

You already know.

The internal monologue of a special needs mom at a doctor’s appointment is its own genre. It is part exhaustion, part deja vu, part Olympic-level efficiency, and part “I love you but please catch up faster.”

We’re not being difficult. We are being efficient. We have called this line, this clinic, this specialist’s office more times than we can count. We know our child’s medical history better than the resident reading it for the first time. We know which medication, what dose, what timing, what protocol. We know what’s going to be suggested before it gets suggested. We know what works and what definitely does not.

And after almost ten years of this, the patience for “let’s start from the beginning” has worn thin.

So when I call after hours and politely tell the nurse that yes, I know seizures are serious, but no, this isn’t an ER situation, here’s what we actually need from the on-call doctor, please and thank you… I’m not being rude. I’m just running out of time, energy, and the ability to walk anyone through Special Needs Parenting 101 in the middle of a flare-up.

Tag a special needs mama who has BEEN here. Or who is calling the after-hours line right now. We see you. 😅🤍

momhumor relatablemom specialneedshumor specialneedsfamily momlife invisiblelabor caregiverlife

04/28/2026

No, I’m not forgetful. My brain is just FULL. 😅

I will forget what I ate last night. I will forget where I put my keys. I will forget if I responded to that text. I will forget the simplest, easiest things.

But ask me about Isa? I can recite every medication he’s ever been on. Every dose, down to the milligram. Every dosage change. Every seizure rescue protocol. Every doctor’s direct line. Every appointment for the next 6 months. Every insurance code.

Memorized. Locked in. Ready at any moment.

Here’s what I learned from my psychology background that explains this perfectly: it’s called cognitive load. Your working memory has limited space. When that space is being used to store critical, life-or-death information about your child, your brain literally deprioritizes the smaller stuff to protect the bigger stuff.

So when I forget your birthday, it’s not because I don’t love you. It’s because my brain chose “rescue meds and dosing” over “Aunt Mary’s birthday is November 4th.”

Honestly? Good call, brain.

Special needs moms aren’t forgetful. We are running a 24/7 medical operation in our heads. We are remembering the things that could save our children’s lives. There simply isn’t room for everything else.

So if you’re a special needs mama feeling like she’s losing it because you forgot a small thing again, please hear me:
You’re not losing it. Your brain is just full.

Forget the dinner. Forget the keys. Forget the birthday.
You are remembering the things that matter most. 🤍

Tag a mama whose brain is also at full capacity. 😅🤍

epilepsymom medicallycomplexchild momhumor relatablemom specialneedsfamily momlife specialneedshumor

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