Surviving Marriage and Motherhood While Raising Children with Additional Needs (and Running Two Businesses)

Life in Survival Mode

No one tells you how much your marriage will be tested when you’re raising children with additional needs. People talk about sleepless nights and toddler tantrums but not about PEG feeds, cortisol deficiencies, or therapy appointments that fill your diary before you’ve even had a chance to breathe.

For us, it’s been a journey of learning, adapting, and redefining what love looks like.

Our twins, Teddy and Max, were born prematurely. They spent months in NICU, fighting battles that no baby should have to face. Teddy was later diagnosed with a cortisol deficiency, meaning his body doesn’t produce the stress hormone it needs to stay safe, so every illness, every temperature spike, feels terrifying.

Max has cerebral palsy, affecting his left side, and therapy is now a huge part of our weekly life. At 2.5 years old, both boys are still delayed; physically, emotionally, developmentally. Every small milestone feels monumental, but the journey to get there is exhausting.

There are moments when I watch them play or try to and I feel this ache in my chest. The ache of pride, but also the ache of grief. Grief for the ease that other parents might have. Grief for the version of motherhood I thought I’d experience.But also an overwhelming love so strong it takes my breath away.

Then there are the tantrums. The kind that aren’t just “terrible twos” but a mixture of frustration, sensory overload, and developmental struggle. They’re draining. and when they happen at the same time (which they often do), it feels like you’re just trying to keep your head above water.

Amid all this, we still have two older daughters who need us, for homework, cuddles, school runs, and reassurance that they’re seen and loved too. The guilt of feeling like you’re not giving them enough time is heavy. Sometimes it feels impossible to divide yourself into so many directions. This is my honest view on marriage and motherhood.

Balancing Parenting and Business

Then, there’s work. We’re both business owners; two sole traders trying to keep our businesses alive while juggling family life and hospital schedules. That means no sick pay, no backup, no time off. Just the pressure to keep going, even when you’re exhausted, emotional, or spending your day chasing hospital letters and therapy notes.

There are days I’ll be replying to client emails in between therapy appointments, or editing something while on hold to the hospital. There are moments where the lines between “work time” and “home time” completely blur.

I manage all the appointments, prescriptions, phone calls, and endless admin that comes with having children with additional needs. Every hospital, clinic, and specialist runs through me and it can be overwhelming.

Someone once said to me that we’ve been programmed like Navy SEALs, always on high alert, ready to go at any moment. It’s true. You never fully relax. You’re constantly scanning, anticipating, and preparing for what might happen next. Whether it’s a hypo, an emergency hospital visit, or a call from school, your body stays in that heightened state of awareness.

But the moment Darren walks through the door, he switches straight into dad mode. He’s present. He takes over. He knows when I’m overstimulated and steps in quietly, without me even needing to ask. He’s my calm, my anchor, the one who can bring me back to myself when my brain feels like it’s spinning in ten different directions.

We’ve built this unspoken rhythm, this invisible dance of who steps up when the other starts to crumble. It’s not perfect, and sometimes we step on each other’s toes, but it’s real.

The Toll It Takes

We both feel like we’ve aged massively over the last couple of years! We’re tired, mentally, physically, emotionally.

There’s a kind of exhaustion that sleep doesn’t fix. It’s the kind that sits in your bones, that shows in the mirror when you catch your reflection and realise you don’t quite recognise yourself anymore.

Neither of us feels completely happy with the way we look, but honestly, the thought of going to the gym with everything else we’ve got going on feels like it could tip us over the edge.

Right now, I’d pick an hour’s relaxing massage over a step machine any day! Because sometimes, rest is the healthiest thing you can choose.

We laugh about it sometimes, that we used to worry about Friday night plans, and now we get excited about an early bedtime. But there’s also comfort in knowing that we’ve created this little cocoon of chaos and love, and that somehow, even when it’s all too much, we still want to be in it together.

Reconnecting After Feeling Like Housemates

When your life revolves around medication schedules and appointments, it’s easy to become teammates instead of partners. You start to communicate through logistics:

“Who’s doing physio today?” “Did you order the syringes?” “Can you ring the hospital back?”

You forget to ask, “How are you really doing?”

There was a time not so long ago when we both admitted we felt more like housemates than husband and wife and I think it shocked us both. We’d slipped into survival mode for so long that we’d forgotten what it felt like to really see each other.

We were functioning. Efficient. Organised. But love had become quiet. Background noise to everything else we were surviving.

And then one day, something shifted. We made space again, even if it was just a few minutes here and there, to talk, to laugh, to touch, to remember who we were beneath the layers of parent, carer, and provider.

Now, we can’t keep our hands off each other! It’s like we fell in love all over again, but deeper, because we know what it took to get here.

We’ve had our hard days, the kind where you sit in silence because you’ve both given everything you’ve got. But we’ve also had the moments that remind us why we’re still here, still side by side.

When the house is finally quiet, and it’s just us we laugh. We eat the unhealthy snacks. We watch something rubbish on TV. We just be.

After nearly 17 years together, those moments mean everything. Because underneath the exhaustion, the responsibility, and the chaos we’re still completely and utterly in love. He knows how to manage my emotions and be my rock, even when I’m falling apart and I can read his feelings deeply, even when he tries to hide his pain.

Marriage and Motherhood - What Love Looks Like Now

That’s what real love looks like. It’s not grand gestures or romantic weekends away. It’s resilience. It’s presence. It’s showing up for each other, even when you have nothing left to give.

It’s holding hands in the dark when the world feels too heavy. It’s making each other laugh through tears. It’s remembering that even when everything around you feels uncertain, you are each other’s constant.

To anyone walking this path, trying to hold your family, business, and marriage together all at once, please know you’re not alone. You’re doing the best you can. And somehow, through the noise and the chaos, love keeps finding its way back in.