Being a special needs mummy πŸ’™πŸ’™

My previous & first blog introduced you to Dylan and how we found out that he is one in a billion, quite literally!! He is unique is more ways than one, now I’m going to give you a little insight of what being a parent of a special needs child is like.

Funny how life can change!! As soon as you find out your becoming a parent life changes. For the better of course. No more being care free, you’ve got a little life that you are now responsible for. What will he/she look like, what will they do as a profession, what grades will they get??? All these questions go through your mind initially and throughout your pregnancy are hugely important.

There really isn’t a text book of instructions for how to bring your child up ‘correctly’. Lots of people have made money writing books on how they think the ‘correct’ way is, controlled crying, potty training, even what wonderful purΓ©es to hand-make them. But what nobody prepares you for is what happens when your bundle of joy is ‘different’ when he has special needs, when he is so complex that no doctor on this earth has seen another one quite like him. He is unique, he is a S.W.A.N.!! He is so special and I am so honoured and lucky to be called his mummy.

A love for any child is unconditional but the love for a special child is so much more. The fact that I am his world, I am his voice, his nurse, I am his mummy. And he is my world. He is my security blanket like I am his.
So I have, rather repeatedly phrased below just some of the things that make me a mummy to a very special little boy.

You know you’re a special needs parent when for one, it’s 1.45am and you’re wide awake with your child and find time to put pen to paper, or if your living in this century using an iPhone to blog!!

You know you’re a special needs parent when your son gets more post than your whole family put together and they are all hospital appointments, clinic letters and discharge letters.

You know you’re a special needs parent when you’re daily outing is to a hospital appointment and on some days you have two, maybe even 3. This is a busy day, especially when they’re at different hospitals. When your day trip to London is just to see a doctor and not to buy a handbag in Selfridges!!

You know you’re a special needs parent when not only are you on first name terms with your GP you have the seat outside his door reserved for all your appointments and all the receptionists know your name.

You know you’re a special needs parent when you spend more time talking to virtual mums on Facebook who are in similar situation than to your own friends

You know you’re a special needs parent when you spend more time filing paperwork than an office junior would!! In fact you could wallpaper my whole house three times over with the paperwork I hold on Dylan.

You know you’re a special needs parent when you know more medical jargon than most medical professionals

You know you’re a special needs parent when you have more than 39 health professionals involved in your child’s care.

You know you’re a special needs parent when a trip to doctors is more frequent than a shopping trip!

You know you’re a special needs parent when you haven’t had a full nights sleep since B.D. (before Dylan!!)

You know you’re a special needs parent when you believe your child has taught you more than you have thought him

You know you’re a special needs parent when you have more stock in medicine cupboard than Boots dispensary and you make up your own antibiotics for him with your eyes closed.
You can recite the name and dosage and milligram of each medicine in your sleep (if you was to have any)

You know you’re a special needs parent when the therapists involved in Dylan’s care know more about what’s going on in our lives than our friends do

You know you’re a special needs parent when It hurts every time you hear someone complaining about their children teething or has a cold as you know they’ll get over it…… But you’d never tell them this!!

You know you’re a special needs parent when you have been asked countless times if you are a nurse because of your medical knowledge. You feel like a walking medical dictionary

You know you’re a special needs parent when you’re on first name terms with all the consultants and have their personal email addresses to which you can start a conversation with at any time if the day and know they’ll reply.

You know you’re a special needs parent when you don’t leave home without syringes, bottles of medicines, suppositories and oxygen

You know you’re a special needs parent when your calendar is full of hospital appointments and your monthly delivery (which you get excited about receiving) is of syringes

You know you’re a special needs parent when you quite happily talk bowel movement over dinner

You know you’re a special needs parent when you know the phlebotomist so well he recognises your voice on the phone and you know his children’s names, ages and ailments!

You know you’re a special needs parent when you have morphine and codeine bottles on every window ledge, syringes and injections laying around on sides that visitors probably think you’re a drug addict

You know you’re a special needs parent when you don’t have to say who you are when you arrive for an appointment

You know you’re a special needs parent when going to the dentist alone for a filing feels like a spa break!

You know you’re a special needs parent when re-setting the monitors in hospital or re-applying the sats probe to get a better reading is the norm!!

You know you’re a special needs parent when you can predict his temperature and getting it spot on in front if the doctor

You know you’re a special needs parent when you have the numbers of the local takeaway’s stored on your phone – local to the hospital!!

You know you’re a special needs parent when resuscitating your child becomes the normal!!! When looking to see if he’s breathing becomes as normal as checking to see if his face is clean!!

You know you’re a special needs parent when you’ve always got a phone in your hand ready to video seizures

You know you’re a special needs parent when you look at your child and your heart melts for him you look at what he can do as opposed to what he can’t.

You know you’re a special needs parent when you read this back and laugh out loud at the truth in it!

You know you’re a special needs parent when you make a mad dash across the chemist when you hear someone asking for something to cure their germs, you know you really can’t catch bad breath but that doesn’t stop you hiding in the corner till they’ve gone, so much so the pharmacist pushes you out and home delivers the drugs instead!
When you leave a shop when you hear someone sneeze, cross the road when someone coughs, and if you were to hear someone mention they’d had the sick bug this century you practically leave the country.
Wearing gloves (even in the summer) when pushing a supermarket trolley
Having an immune suppressed child has made me even more neurotic than I already was…… But I only want to protect my innocent little boy. Even at Great Ormond Street Hospital they have a private side room in the waiting area for me, it’s like I’m the queen – I can’t sit in a general waiting area with ‘other people’. I almost put an ‘lol’ after that but the reality of it’s really not funny but sometimes, just sometimes you have to see the funnier side of it,

I can just picture what these nurses must say as I approach to check in ‘oh no, it’s her again…… Just stick her in the side room, tell her exactly how late the docs running, tell her exactly where his notes are and that yes they are filed in precise order just like you said last time, ask whether Dylan’s been weighed this week – she’ll know to the exact ounce and millimetre of her son that one and shut the door!!’

You wish u have the power to read minds, then I’d read his

You have learnt that the strongest fighters come in the smallest of packages

You think your child is braver than you

You’re elated when he proves doctors wrong

I’m sure someone will be reading this, also with a SN beautiful child, nodding, smiling and agreeing with most and will know exactly what I’m talking about. Others may wonder just what planet I came from. Either way, welcome to my world!

Keep smiling, I do!!

Love Dylan’s mummy xx

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4 thoughts on “Being a special needs mummy πŸ’™πŸ’™

  1. Danny, You are a brave woman…I feel your love and at the same time exhaustion. We never know what tomorrow my bring….as Winston Churchill( I know I am a yank!) said…never evere…ever give up.
    Love

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  2. Your post has me in tears! It is beautiful and your love and admiration for your brave little man is tangible. My baby is physically disabled and so much of what you said is so true for us too but we are so lucky that it is just his legs.
    You are an amazing and incredible mom and I wish you and your gorgeous boy all the best in the world. Xxx

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  3. It’s like I wrote this myself. I feel your pain, exhaustion, excitement, pride, satisfaction, fear and love with every breathe I take.

    Xx

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  4. Dan we have known each other for over 20 years you are and have always been an amazing person. Dylan is lucky to have you as well as you are to have your beautiful swan. Love you both. I’m so pleased you had a wonderful day. I promise you from my heart that there will be many wonderful days for you all. SWAN is an amazing charity for you. And I’m here for you too. Xxxx

    Like

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