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Special Needs Parenting: What I would say to my 19 year old Self

Special Needs Parenting: What I would say to my 19 year old Self

Those hugs and kisses will come, don’t worry.

The doctors and nurses just need to make sure he’s stable enough to withstand being handled, they need to get his seizures under control and help him breath. Those machines you can see, those beeps you can hear. They’re all there to help him. Those meetings you keep being called to, the plans around resuscitation and blood transfusions. They’ll eventually end - with a much better outcome than you’ll be told in the meetings - you ARE going to take your baby home.

Throughout his life, I can tell you - You’re going to scream, scream louder and harder than you thought you could. You’ll scream for many different reasons. You’ll scream with happiness and excitement when you see him reach milestones you were told he wouldn’t.  You’ll scream in fear, fear that he’ll lose the battle this time, will this be the seizure that’ll mean the end? You’re going to laugh, you’ll laugh a lot. At his funny little smile, his cheeky personality.

You’ll laugh at other people’s ignorance towards ‘real’ life. You’re going to cry, yeah…a lot. The crying part really hasn’t stopped yet. It won’t be all the time, just the dark days - the days when you realise, just how different you and your child are from the rest of your friends and family. Some will even be happy tears - like when you’ll hear him laugh, it’ll take a while for him to do it. He’ll be around 18 months, and some will even say it’s not a ‘real’ laugh, but you know it is, and it’ll be your favourite sound in the world - then his yawn will be the second! You’ll smile. Those smiles will be around more often as he grows, I promise.

You’ll even learn to smile at the professionals who’ll say he can’t do something, he’ll show them. You’ll feel alone, alone in a room full of people - specialists, physios, OTs, paediatric doctors, neurologists, learning disability nurses, feeding experts etc, whilst they’re all talking about what’s best for your child. You’ll feel inadequate - Useless. I mean, I can see you thinking “What do you know? You’re just a kid yourself, how will you ever understand these big words and their medical terminology?”. Well, let me tell you…3 years down the line and you can still shock doctors and nurses by how much you know.

You’ll even be able to tell them some things about your son that they don’t know! You’ll feel guilt, like you’re somehow going to fail him. Don’t worry - you won’t. You’ll feel like Super Mum sometimes. When you’ve juggled 5 appointments in one day, you’ve planned feeding times and strategical naps between them, just to make sure your son has a chance to show his potential in front of the physio! You’ll be more scared than you’ve ever been before - you’ll spend hours upon hours in the resuscitation area of a&e, you’ll watch your child fight for his little life not once, not twice but three times. 3 weeks before he turns 3 you’ll be sat in the paediatric intensive care unit, learning how to do gastronomy feeds and how to manage his epilepsy. You’ll spend that birthday in hospital, but don’t cry about it. It’s for the best. You’ll grieve, grieve the child you’ve never met, the things you’ve missed out on as he has grown. He might not be able to ride a ‘normal’ bike, but you’ll get a specialist one provided by an awesome military charity, you’ll be SO excited when you see him ride it!

You’ll deal with seizures, surgeries, medications, hospital stays and you’ll start to feel like a nurse in some ways. You’ll have listened and watched many students be trained, you’ll think you can do it yourself! You’ll feel like a pharmacist, your medicine cupboard looks just like the pharmacy, bursting at the seams, but you’ll have it organised and neatly set out - you’ll know what you’re doing. You’ll be his PA, making and taking phone calls, planning and rearranging appointments around his other commitments. You’ll think you’re doing it wrong but you’re not. You’re learning. You’ll feel the lowest lows you’ve ever felt but I promise you’ll also the highest highs there are. The two will actually be pretty close together. Like the time when he was 12 months old and he said “HIYA!”, but not long after, a seizure will come along and wipe it all away. You’ll feel love stronger than ever before, see courage, strength and determination shine through that little person. He is going to be just perfect. Maybe not to the world around him, or to the doctors who will prod and poke him. But he will be YOUR perfect. And do you know what? Everything is going to be okay. You’ll just change your meaning of ‘okay’.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Emmy Heaton

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Hi I'm Emmy, mum to AJ who has cerebral palsy.

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