When you become a parent, people talk endlessly about The Moment. That instant rush of love. The overwhelming connection. The magical feeling when your baby is placed on your chest and suddenly everything changes. But what happens when that moment doesn’t come? Or worse; what happens when you’re never really given the chance? I spotted in a Facebook group for parents of children with complex medical needs, a mum shared how guilty she felt because she hadn’t bonded with her newborn yet. And honestly I wanted to reach through the screen and hug her, because I know that feeling far too well. The truth is, bonding difficulties are already incredibly common amongst parents of typically developing babies. Exhaustion, hormones, traumatic births, anxiety, postnatal depression, all of these things can delay attachment. Love doesn’t always arrive in a cinematic rush. Sometimes it grows slowly and quietly. But when your child is born with complications, bonding can become tangled up in trauma. And nobody really warns you about that part. Instead of skin-to-skin, you might get wires and monitors. Instead of taking your baby home, you get hospital wristbands and fold-out chairs that double as the world's most uncomfortable bed. Instead of learning your baby’s cries, you learn the sound of alarms going off at 3am. There are parents, like me, who spend the first weeks of their baby’s life asking for permission to hold them. Parents who watch nurses change nappies, give feeds through tubes, administer medication, and soothe their child while they stand nearby feeling completely helpless. Parents who don’t get to be “mum” or “dad” in the way they expected yet, because survival takes priority over bonding. And the guilt that comes with that is crushing. I remember feeling like everybody else had been handed a map to parenthood that I somehow missed out on. Other people seemed to float into newborn life while we were learning medical terminology we couldn’t even pronounce properly. There is nothing quite like sitting beside a hospital cot thinking, I love this child with everything in me, so why do I feel so disconnected at the same time? The answer is trauma. Your brain is trying to survive. Because alongside becoming a parent, many of us are also entering a grief process. And that sentence can make people uncomfortable, but it’s important to say out loud. You are not grieving your child. You are grieving the life you thought the two of you would have. The ordinary moments you imagined. The ease. The expectations. The version of parenthood you built in your head during pregnancy. And grief is complicated when your child is right there in front of you needing you to fight for them. One of the most powerful things our hospital psychologist shared with us was the piece Welcome to Holland by Emily Perl Kingsley. It has become something many parents of disabled children hold onto tightly because it explains this feeling better than almost anything else ever has, please read it! But essentially Emily says: “When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice…” But then: There’s been a change in the flight plan. You've landed in Holland and there you must stay. Emily doesn’t say Holland is bad. She just says it’s different. Different to what you prepared for. Different to what you expected. Different to what everybody else seems to be experiencing around you. And sometimes accepting that difference takes time. Longer than people think. Longer than social media tells you it should. Longer than the “you’re so strong” comments allow space for. If you are in this stage right now, sitting beside your child and wondering why bonding hasn’t happened yet, please hear this clearly: You are not failing. You are not cold. You are not a bad parent. You are traumatised, exhausted, frightened, grieving, and trying to rebuild an entirely new version of parenthood whilst functioning on no sleep and pure adrenaline. Bonding doesn’t always happen in a single moment. Sometimes it happens drip by drip. In tiny victories. In learning your child’s cues. In advocating at appointments. In the first smile. The first time they relax against you. The first time you realise you know exactly what they need before anybody else does. Sometimes love arrives loudly. Sometimes it arrives quietly after survival mode finally loosens its grip. And if I can give one piece of advice to parents entering this world, it’s this: Get therapy. Not because you’re broken or because you’re coping badly. But because this experience is enormous, and most people around you will never fully understand its weight. There is trauma in watching your child suffer. There is trauma in living inside hospitals and the relentless uncertainty. And there is also healing in finally saying out loud, “This is hard.” Because it is hard. Beautiful too, sometimes overwhelmingly so. But hard. You can adore your child and still mourn the ease you lost. You can feel grateful they survived and still feel devastated by what happened. Those feelings can exist together. And over time, what once felt unfamiliar slowly becomes home. Not Italy. But Holland.

Elias lies in a hospital bed, in the background his mum has set up her work laptop on the hospital table There's a particular kind of hospital stay nobody warns you about. Not the dramatic one with a surgery date and a consultant explaining risks by your childs bedside before the whisk them away. The other kind. The "we're just going to watch him for a bit" kind of one. The one where someone else has to pack a bag for you, not knowing if you'll need it for one night or four, and you don't get a neat answer at the end, just a slightly more confident shrug. That was our weekend. Elias started headbanging, hard, the kind that makes your stomach drop because you can't ask him "does it hurt" and get anything back. So we did what you do: we went in to A&E. And then we waited. They scanned him, they prodded him, they watched him on a monitor that beeped in a rhythm I now know better than my favourite songs. Doctors came and went with kind faces and no real news, because there wasn't any to give yet. Just more watching. If you've never sat through one of these admissions, here's what nobody tells you: the not knowing is its own kind of exhausting. Surgery has a shape. You can mentally prepare for "before" and "after." Monitoring has no shape. It's just hours, stacked on top of each other, in a room that smells faintly of hand sanitiser, while you try to read your child's face for clues the machines aren't picking up. And here's the bit that felt like the biggest non-event of the whole stay, and also somehow the most honest thing I can tell you: we left without an answer. He's not in pain, as far as they can tell. That's it. That's the discharge summary. No tidy diagnosis, no "ah, here's what it was." Just a tired, relieved, slightly anticlimactic "go home." I used to think that not getting an answer meant the admission had failed somehow. Like we'd put him through scans and prods and sleepless nights for nothing. I don't think that anymore. Ruling things out is still information. Pain being off the table, even without knowing what's on the table, matters. The photo at the top of this post is my desk setup wedged in beside his bed, laptop balanced on that little fold-out table by the window, because I had to keep working during this hospital stay. Not because I'm some unbothered parent multitasking through a crisis. It's because at hour fourteen of watching someone sleep and listening for changes in their breathing, your brain needs somewhere else to go for twenty minutes. A spreadsheet. An email. Anything that isn't the beep. You're allowed that. Sitting next to your child while they're monitored isn't a passive job, even though from the outside it might look like you're just sitting there. You're holding vigil and also holding yourself together, and sometimes the way you do that is by opening a laptop and pretending, briefly, that you have a normal Tuesday. We came home with no diagnosis and a small mercy: he's not hurting. For now, in the world of complex parenting, that counts as a win. I'm taking it.

Elias kneels on the floor, casually side-eyeing the offending yellow balloon to his left that will later become his downfall There are certain parenting milestones you picture in your head long before they happen. First steps. First words. First tooth. And then there are the milestones you absolutely do not picture. Like your child launching himself face-first into a wooden floor via an exploding birthday balloon and losing a tooth in the least magical way imaginable. Yet here we are. Because of Elias’ developmental delay, even getting his first teeth felt delayed compared to other children. He didn’t get his first tooth until he was around 14 months old. We’d also been told not to expect him to start losing teeth until closer to seven years old. So naturally, at the age where other children are still proudly showing off fully intact toddler smiles, Elias decided to speedrun the experience. It started over the bank holiday weekend during celebrations for his younger brother’s birthday. The house was full of balloons, sugar, noise, and chaos. Elias with his face pressed into the balloon Elias loves balloons. Obsessed with them. Holding them, bouncing them, lying on them. All standard Elias behaviour. So when he started playing on one, none of us thought twice about it. Until it exploded. If you’ve ever seen a child completely lose all sense of gravity and bodily control in one split second, you’ll understand the kind of panic that follows. One moment he was happily playing, the next he had gone down face-first onto our wooden floor with an almighty thud. There were immediate cuddles, immediate tears, immediate guilt. Standard parenting procedure. At first, I thought we’d escaped with just a nasty bump. It wasn’t until a few moments later that I looked down and realised my entire top was covered in blood. And then I saw one of his front teeth had been pushed back up into the gum. That was the exact moment my brain exited the chat. While my partner attempted to calmly talk me down from what can only be described as a full internal medical catastrophe spiral, I sat on the phone to 111 trying to explain what had happened through sheer panic. Then came the part every parent of a child with additional needs knows all too well: repeating your child’s entire medical history over and over again to different professionals. Two emergency dentist trips followed. Every appointment started the same way: “Yes, he’s developmentally delayed.” “Yes, he’s deaf.” “Yes, he has additional needs.” “Yes, communication can be difficult.” “No, he won’t tolerate that.” By the time we finally got through the bank holiday weekend and into our wonderful local community dental team for children with additional needs, I felt like I’d completed some kind of emotionally exhausting NHS side quest. And then, two days later, we woke up and the tooth was simply… gone. Not loose. Not hanging on dramatically. Gone. Vanished into thin air. Or more realistically, into Elias. Now, many people kindly suggested I could “check” for it. I want to make it very clear that there is not a maternal instinct on this earth strong enough to make me root through toddler poo searching for a tiny blood-covered tooth like some sort of deranged archaeologist. So unless that tooth plans on reappearing with its own witness statement, we are officially considering it lost forever. There was no tiny tooth fairy letter. No magical coin under the pillow. Honestly, I’m not even sure Elias would understand why a mystical nighttime burglar was exchanging body parts for money anyway. Elias smiles at the camera, a noticeable gap where his two front teeth would be. Instead, there were just a lot of cuddles, a traumatised mother, and a very gummy little smile where his front tooth used to be. And perhaps that’s the thing about parenting children with complex needs. Even the milestones don’t happen the way you expect them to. The stories are messier. The emotions are bigger. The plans are irrelevant. Sometimes your child loses their first tooth not in a sweet primary school photo moment, but because a birthday balloon betrayed your entire family (every balloon was round up and burst immediately after the incident in retribution). And sometimes you discover that in a crisis, one parent becomes the calm, reassuring voice of reason… while the other one is mentally drafting NHS complaint forms, Googling “can toddlers survive without teeth”, and trying not to pass out into a puddle of their own anxiety. For the record, I was the second parent. Absolutely useless.

Find a curated collection of expert articles, guides, and tools designed to support you at every stage of parenting. Empower yourself with knowledge and practical advice to navigate the complexities of raising children with confidence. OurResources . Filter by Content Select Content Apply Filters Reset Filters Filter by Tags Select Tags Blog When Bonding is Hard A heartfelt look at bonding with your newborn when hospital stays, trauma and grief make those early moments look very different. Blog Q1: Is Your Child Still Operational? The quarterly business review season of parenting a child with additional needs. Audiologist. Physio. Paediatrician. All at once. Obviously. Blog The SEND White Paper: Families Are Still in the Dark. The government finally published its SEND White Paper. But the one question every parent needed answered? Still unanswered. Blog What having a disabled child really does to a relationship It's not a lack of love that strains a reltionship after diagnosis; it's exhaustion, grief and doing an impossibly hard job Blog The Limbo Admission No surgery. No diagnosis. Just days of watching and waiting. Here's why leaving without an answer still felt like a win. Resource Top tips for an inclusive Easter egg hunt For disabled people with complex needs, it’s often not the activity itself that’s the challenge, but the barriers around it. Blog Learning to Love Your Child's Solo Adventures How to help your complex needs child when all they want is space and solitude. Blog Why Speaking Up Matters An unexpected diagnosis can change everything. Why voices like Jesy Nelson's matter, and why no parent should face this alone. Blog How Not to Lose Your First Tooth Elias lost his first tooth after a birthday balloon accident, emergency dentists and one very panicked mum trying to hold it together. Blog Put Your Armour Down, Mama Parenting a child with additional needs means expecting the worst. But what if most people are actually, quietly, rooting for you? Blog Why Hospital Staff Are Central to Family Care My first birthday as a parent was spent in ICU with Elias. But a cake and group of nurses reminded me that hospital staff hold families together Article BBC: Postcode Lottery of Parenting Early childhood, an important stage in determining a child's long-term future, is also a period that can get lost in our national politics. Load More...

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Explore inspiring stories from real parents on Complex Parenting's Our Stories page. Dive into personal experiences, challenges, and triumphs to find encouragement and solidarity in your own parenting adventure. Our Stories . Elias' Story . On Oct 31st, 2021, our lives changed completely when Elias was born, our little pumpkin baby was the most beautiful boy I've ever laid my eyes on. However, joy turned to worry almost immediately. Elias was born with a rare condition which meant his nasal passage hadn't opened completely, so (because babies aren't mouth breathers), he couldn't breathe on his own. Watching our newborn be taken from my arms and intubated, before being rushed to ICU was one of the scariest moments of our lives, and it was only the beginning of our journey. Within 24 hours we were in an ambulance being transferred to Great Ormond Street Hospital where Elias spent the first 6 weeks of his life having the life-saving surgery to fix his airway, and then an additional procedure on his heart to fix a duct that hadn't closed properly after birth. Elias has now been diagnosed with CHARGE syndrome, an extremely rare and complex syndrome which means he is profoundly deaf, has low muscle tone so is yet to start walking, and has global developmental delay. He loves to eat, he laughs, claps and sings along to his favourite TV shows and games, he finds his own unique way of getting to where he wants to be, and he will show you with conviction when he wants something, especially if his younger brother already has it! For now, Elias needs us to advocate for him, and we have been fighting his corner for him since birth, ensuring we got him into the school of our choice, and making sure he doesn’t fall between the cracks when it comes to NHS care and therapies. Elias is a warrior. He has overcome more in his short life than I have done in 34 years. He has taught me patience, humility and love, and he inspires me everyday to be better and fight as hard as he has. When he is older we will absolutely look back on the early years of his life and tell him his 'origin story' with the kind of nostalgia only distance can provide. But in the meantime, we just want him to have the best care possible. I have cried, I have cursed, I have been scared, I have been frustrated. But the overwhelming feeling has always been one of loneliness. No one else understood the fight we were fighting, and as Elias' parents we felt like we existed on an island. I wanted to create the Complex Parenthood Group to give other "Professional Parents" (aka Medical Mums & Doctor Dads) the support I was searching for in Elias’ early years: A network of like-minded complex parents who were experiencing what we were experiencing and could give us real life advice that they had lived through. Elias's journey is one of strength, love, and hope, and CPG is committed to sharing that with the world while striving to give him, and families like ours, the best possible future.