A Day in the Life of a Special Needs Mom

It’s been fourteen years since our little Gracie arrived on the scene. And I’m here to tell you it’s been fourteen years of ups & downs, more mistakes than I care to admit, many, many life lessons learned along the way, but more joy than a mama’s heart could have ever imagined.

I’m writing to the mom who may be just starting on her special needs journey. I remember what that was like. I had so much fear of the future and whether I was equipped to handle this special delivery.

I’m writing to the mom who has been on this journey for a long time and feels like she’s at the end of her rope. I was you. Heck, I am still you on most days. But I am here to tell you that you are not alone. You are seen and you are loved. Not just by me but by the Creator of the Universe. By the One who knows every hair on your head, even the gray ones and the many that may have fallen out due to stress. By the One who sees every tear, you have cried and collected them in a bottle. By the One who has been with you during every sleepless night, every meltdown (yours and your child’s), every therapy session, every doctor’s appointment, and tough diagnosis. The One that has a plan for your life and the life of your child, and it’s good. So very, very good.

I know it may not seem like that right now. But hang on, mama. There’s more to this story. Your story is not over. Not by a long shot. I am here to hold your hand, cry with you, or laugh until we pee. But it’s going to take work, real work. It may be hard, but I promise you it will be worth it. So, buckle up your seatbelt. We are going on a little ride. Well, more like a ride that shoots you out of a cannon. Either way, put your seatbelt on. You will need it.

This is from the perspective of “if someone would have told me how to do this special needs mom thing.” It’s what I needed when I had no idea what was in front of me or the roller coaster of a ride I would be on. I’m not a fan of roller coasters. I don’t like it when my stomach feels like it’s in my throat. My family, on the other hand, are gluttons for nausea punishment. I have gone with them because I have this “fear of missing out” thing, but it’s definitely not my favorite thing.

So, back to why I wrote this. Sorry for the rabbit trail. I tend to do that a lot. Part of it is my “something shiny syndrome” and part of it is being from a big, loud Italian family where you had to just speak up before you lost your thought, or it would be gone. So, my storytelling tends to run away from me like a toddler chasing a squirrel.

The pages of this story are filled with a bit of my experiences mixed with what I needed someone to tell me when I was at my lowest of lows. This is my discovery of trial and error in becoming who I am today through all the messy ups, downs, and sideways twists and turns life tends to throw at you. You know those times, don’t you? The times when you feel like you got the wind knocked out of you and you are trying to catch your breath or the times when you feel like you are just treading water, and you are sinking and only able to come up for quick breaths before you sink again. Or the times when life gets so busy you are burning the candle at both ends and you are running out of wick.

What I am about to share isn’t everyone’s cup of tea. Honestly, I’m not everyone’s cup of tea—and that’s okay. I’m simply offering a glimpse of what my days are like as a special needs mom, not to complain but in hopes that one mom reads this and says, Yes, that’s me too. Finally, someone gets it,” then it’s worth sharing.

I’m sure you are not looking for unsolicited advice, sympathy, or suggestions on how to handle any one of the scenarios I’m about to describe. This is not about finding better parenting solutions; it’s about showing the reality of a special needs mom's daily life. It’s messy, overwhelming, and sometimes heartbreaking. It isn’t every special needs mom’s journey, but it is mine. You may find similarities in your story because there’s a unique reality that special needs moms face every single day—one that most people, even other moms, may not truly understand. While some parents of typical children might encounter similar struggles for a season, the difference is that for many of us, these challenges are unique, complex, extreme, and ongoing. They last much longer than that of a typical child, some even last a lifetime, creating a heaviness we carry daily. And pretending we’re okay all the time doesn’t make that weight disappear.

I read somewhere that the hormone levels of a special needs mom are like that of a combat soldier. That’s pretty intense if you ask me, but I can definitely relate to those surges of cortisol sending you into a fight, flight, or freeze response.

Special needs moms often wear the title "warrior" not because we asked for it but because life demands it of us. We fight silent battles that are hard to describe—some that we ourselves didn’t even know we were capable of facing until we were in the thick of them. And we do it daily.

Some days, even when I’m fully aware that God is holding me through this journey, I still feel overwhelmed, tired, and honestly, battle-weary. But there’s healing in talking about it, and my hope is to share my heart so that another mom reading this knows she’s not alone.

To The Mom Who….

The mom whose life is not as she expected it would be.

The mom who may seem normal from the outside, but on the inside is hurting, lonely, exhausted, confused, stressed, and unsure of the future.

The mom who has been given the responsibility of raising a child with special needs—whether that be a cognitive impairment, a behavioral or neurological disorder, a mental or emotional disorder, or a medically fragile child.

The mom whose expectation for the family she thought she would have has been shattered by the reality of physically and emotionally draining episodes, doctor’s appointments, therapies, special diets, and structured days dictated by an attempt to avoid as many issues as possible.

The mom who lives on eggshells in her home, trying her best to parent a child who constantly demands her attention, energy, and emotions.

The mom who aches at the negative effects her child has on her other children.

The mom who feels judged by the looks of others when their child acts out or does something inappropriate.

The mom who feels anger towards her child for the pain they cause, and then guilt for feeling such anger.

The mom who wonders if they did something wrong or could have prevented the struggles they face.

The mom who wants to help her hurting child but feels helpless to do so.

The mom who asks, “Why, God?”

I see you. I understand you. I am you.

Here is a glimpse into the life of one mama’s journey.

My Life With Gracie

When Gracie was a baby, she was pretty much just like any other baby. She was cute and cuddly and spent her days eating, sleeping, and pooping. Lots of pooping.

When she was a toddler, I started to notice the delay. I know all kids develop at their own pace, but Gracie was living life to the beat of her own drum. No amount of therapy or coaxing was going to move her. When she was ready, she would do it, whether that was eating, crawling, walking, talking, or whatever new challenge we were facing.

Gracie was in individual therapy from birth. A therapist would come to the house when she was a baby. I had no reference to judge her progress. It wasn’t until we joined the mom group at our local school district that I began to see even the differences between the other babies with Down Syndrome.

But the older Gracie got, the more I could see a gap in how other kids were developing. With each passing year, the more challenges we faced, the more my mama’s heart broke when she didn’t fit in with the other kids.

When you talk to another special needs mom, you often hear the term “our kids” as if we are in some sort of secret club that only card-carrying members understand. I would hear phrases like “our kids will do this or do that” or “our kids struggle with this or that.” And the truth is they all do have many challenges for sure, but just like any child, they are unique.

Here’s a glimpse into our daily challenges and victories. Keep reading to see the strength and joy that we uncover amid the chaos.

Fast forward to what a day in the life with Gracie is now:

Let’s start with the simple act of leaving the house—something that, for most moms of 14-year-olds, might be as easy as grabbing their keys and heading out. No quick exits for us. It’s more like a tactical mission that requires military-level preparation. I don’t just grab my purse. I’ve got a checklist that could rival a camping trip.

We need Gracie’s headphones, and not just any pair will do. Nope, we have to use the noise-canceling, over-the-ear kind that you would use at a gun range. Yep—those headphones. Because without them, we won’t even make it through the door of a grocery store, let alone a noisy restaurant. She won’t even step foot in church without them either. Loud noises, like hand dryers in bathrooms, or the sudden roar of a blender at a coffee shop, are her kryptonite. So, we put the headphones on in the parking lot, like we’re gearing up for battle.

Then there’s the water bottle. Always. If we forget the water bottle, Gracie will remind me every five minutes that it’s missing until I’m ready to pull my hair out. Along with that, I pack a change of clothes (or two), wipes, pads, extra underwear, and of course, her tablet—fully charged with games and apps she loves. Don’t get me wrong, I’d love to be one of those moms who says, My kid doesn’t need screen time. But honestly, the tablet is our lifeline. It keeps Gracie occupied when the world around her is too loud, too fast, or just too much. I also carry her old cell phone loaded with games. We can’t forget her trinkets either: Chapstick, a hair tie, markers, a fidget spinner, and whatever random treasure she’s latched onto that day. Trust me, if I leave one of these behind, it’s like forgetting oxygen. And yes, all this is for a trip that might only last an hour. You would think we were going on a mini-expedition. Nope, just a trip to Aldi. You see, in my world, anything less than over-prepared is asking for disaster. Inevitably, it’s always the day I leave in a rush or God forbid I forget one of Gracie’s “must-haves” is the day we needed it. And that’s just not a good day.

You know how, with teenagers, you can let them wander the aisles while you shop? Not me. I’m on constant alert, scanning for the nearest bathroom because, more often than not, the second we step into a store, Gracie’s got to go. It’s always an emergency, and if I don’t act quickly, you’re going to end up hearing over the loudspeaker, Clean up in aisle 6 next to frozen peas.

Yes, Gracie is fourteen, and yes, we still have accidents. It’s not an “if,” it’s a “when.” Just about every shopping trip, we end up in the store restroom dealing with an emergency. Let me tell you, cleaning up poop in public restrooms—more times than I can count—is something that wears you down in ways you can’t even explain. There have been plenty of times I’m scrubbing away with tears in my eyes, not because I don’t love my daughter, but because it’s exhausting. And I think to myself, Other moms don’t have to do this. At least, not anymore. I’ve been doing it for fourteen years. Fourteen years of keeping a change of clothes handy, of scrubbing out messes, of trying to keep it together when all I really want is for it to be over already.

Bathrooms come with their own set of challenges, too. Have you ever tried to explain to a distressed child why the hand dryer isn’t the end of the world? That loud, high-pitched scream from the dryer might as well be a siren going off in Gracie’s head. If I’m lucky, I’ll catch the meltdown before it starts. If not, well… let’s just say we’ve had to flee more than one bathroom.

Many of the real challenges are when we are out in public. The noise, the crowds, and the sensory overloads can happen so fast that I constantly have to stay one step ahead. I’m always scanning the room, aware of where the nearest exit is, just in case we need to escape.

Many times, we have paid to be at an event, and the minute we get there Gracie wants to leave. No amount of bribery will change her mind. We just have to accept the fact that we may not get to enjoy the park or the event. As frustrating as that is, we just have to be okay with the fact that we may have to leave early. My husband is NOT a happy camper when this happens.

Then we get to the emotional side. Gracie is the most loving person you’ll ever meet. Everyone is a potential hug target—whether or not they are ready for it. And I mean everyone. Sounds sweet, right? Until you realize she doesn’t understand personal boundaries. I adore her affectionate heart, but it can be a challenge when you’re trying to keep her from hugging the checkout clerk or the man restocking apples. Sometimes people are kind, other times, they’re not. To Gracie, a hug is the best way to say, Hi, I like you! She doesn’t see why everyone wouldn’t want that. It’s also challenging to teach her about stranger danger. I can’t turn my back for a second.

But it’s not all sensory sensitivities and bathroom emergencies and unsolicited hugs to strangers. There’s also the endless questions, repeated day after day. Like this conversation: Mom, when is Papa coming back to earth? He’s not, Gracie. He is in Heaven with Jesus. Why can’t he come back? Because if he did, he would be sick again, so he has to stay in heaven. Okay, Mom. I will keep praying for God to bring Papa back. It breaks my heart every time.

Or there’s the endless baby questions. Such as: Was I in your tummy? Yes, Gracie. Was I your first baby or your last baby? You are the last baby.

While answering the same questions can make me feel like a broken record, I know that in her mind, these questions are new every single time, and they’re important to her. So, I answer them again. And again. And again……. I have been answering some of them for as long as she could talk.

Gracie is obsessed with her birthday. It’s a daily topic of conversation. She starts asking about her next one the day after her last one. “How many days until my birthday?” “When can we celebrate Christmas?” I answer, knowing I’ll be asked again tomorrow. She loves presents. Giving them and getting them. We have to start the countdown in July for Christmas. Every. Single. Day!

I love family functions and so does Gracie but they can be challenging and even isolating. Gracie often gets left out of the kids’ activities because she can’t keep up, or they don’t know how to interact with her. So, I’m usually the one who has to bring extra games, extra distractions, and extra patience and do my best to fill in as her playmate. But that doesn’t stop the tears when she still feels left out and wants to play with the kids. And yes, it breaks my heart when I see her left out, even when I try to prepare for it. Sometimes Mama is just not what she wants in that moment.

Then there’s the unspoken family dynamic: game nights. Everyone gathers to play a game, and Gracie can’t participate in the same way. So, either I manage her needs while others play, or we sit out altogether.

Oh, the bedtime battles - don’t even get me started. The day might be winding down, but the work never stops. Every night without fail we must remake the bed before Gracie can even get in because she disassembles it every day. For some reason, she does not like blankets, pillows, or sheets on her bed during the day. But she can’t sleep if her bedding and blankets aren’t just right at night. And then there’s the cat – always the cat – who insists on getting under her bed, which sets off a whole new wave of anxiety. So I must extract the cat from under her bed.

And closing doors, that’s a trigger. Whether it’s mine or hers, a closed door can cause tears, so we just don’t. Privacy? We gave that up long ago.

And then there’s the ritual of asking what I’m doing as soon as I step into my bedroom, EVERY. SINGLE. NIGHT. I can't ignore her. I've tried. She just gets louder and keeps asking. So, I respond with, What do you think I am doing? I am getting ready for bed Gracie. Honestly? I’m just trying to make it to bed without losing my mind.

But the questions continue with, Mom, are you ok? Yes Gracie I am ok. Are you sure? Yes, I'm sure. Why would you think I am not ok? You just saw me two seconds ago. Are you in bed yet? and back to, Mom, what are you doing? And it goes on and on until inevitably I get mad, raise my voice, and tell her to be quiet and go to sleep. She cries, I cry and then I have to apologize. We hug. We both say sorry. We pray for Jesus to forgive us and help us be kind and go to sleep. This is a nightly occurrence. Not one of my best mom moments.

Almost nightly I will be awakened from a deep sleep with the request to fix blankets that have fallen, fill a water bottle, pray away the bad dreams, and sometimes extract the cat again. Or it might be Gracie standing over me, Mom, what are you doing? I was sleeping?

Finding Light in the Chaos

Is this my life? Yes. Is it overwhelming? Absolutely. This journey is not for the weak or faint of heart. Some days, it feels like more than I can bear. But here’s the thing—God didn’t give me this life to punish me or cause me pain. I wasn’t chosen to be Gracie’s mom by accident. I am the exact right person for the job, not because I am perfect but because He made me to be a warrior, equipped to handle every meltdown, every sensory issue, every accident, every relentless question, and every difficulty that comes my way. And don’t forget, the one that extracts the cat from under the bed.

Amidst all the challenges and even sometimes tears, there are moments of beauty and unbelievable joy that God has woven into this journey.

It took me a long time to come to this understanding.  And as I said before, it's been filled with ups & downs, more mistakes than I care to admit, and many, many life lessons learned along the way.

There are still days where I feel battle-weary, no doubt, but I remind myself that I’m not in this fight alone. He gives me strength when I have nothing left to give. I may be battle-worn but I am still standing.

And the best part is I was given the most amazing gift.  You may be thinking, I know what that gift is. It's Gracie, right?  To which I would say, Yes, Gracie, is truly a gift sent from heaven above. But the gift I am speaking of is the gift of finding myself. To be honest, I didn't even know I was lost until I needed to be found. This was a rescue mission from Jesus Himself. I discovered who I was in Him and who He was in me. I found an inner strength I didn't know I had. A warrior mom was formed amidst the most painful circumstances.  I found a peace and joy I never knew existed. I learned to love my messy, unpredictable, even sometimes "poop-filled" life, and to find beauty in every part of it. This journey has transformed me. It has reshaped my identity and purpose. 

I would love to help you find that amazing gift in yourself. If you can relate to anything I have shared and are ready to go on this journey I would love to connect with you.

Remember Mama, God chose you. He hand-selected you for this journey. You are equipped, you are enough, and yes, you absolutely can thrive—even when it feels impossible!