Sometimes, as a Special Mama, it’s very easy to feel invisible. Sometimes, it’s like you’ve lost your identity and the person you were before life changed forever.
You may now never get the opportunity to tut in scorn (but inwardly smile, because you know you’ve still “got it”) at builders or tradesmen in vans who whistle as you go by. Well, I don’t anymore, that’s for sure. Let me know if you do and I’ll be proper jealous!
Sometimes, or often, in fact, you may not feel listened to or understood.
Occasionally, you might not remember the last time you laughed.
You rarely get the opportunity to get dressed up – jeans and comfy clothes for lifting and carrying and generally messing about on the floor are your regular attire. Shopping for nice clothes aren’t on the agenda – why bother? – They’ll only get mucked up lugging wheelchairs and special prams in and out of the car…and you rarely go anywhere nice to get dressed up anyway. Hair that’s easily tied in a ponytail is typical, because trips to the hairdresser aren’t as often as you’d like.
You’re constantly juggling life…and sometimes it seems relentless and unproductive and downright stressful and you’re exhausted and have no time for yourself and, it’s just…well…just very, very rubbish sometimes.
I’m not selling this Special World of ours very well, am I?
I’d never get a job in sales or promotions, would I?
But equally, there are truly beautiful, magical times in our lives.
Like times when your child does something for the first time that you never in a million years imagined they would do:
That first hug.
First eye contact.
First and, perhaps, only word.
First smile. *melt*
The first time your child is able to hold their head up independently or breathe on their own or swallow.
Huge, MASSIVE things in our world.
All things that anyone else might just take for granted and expect that it’ll just happen when the milestone books tell them it will.
But we don’t. We don’t take anything for granted. We cherish those times, because time is extremely precious in our world. We celebrate those times. We mark them down in diaries and share our joy on social media or with anyone who’ll listen.
But sometimes, as Special Mamas, we forget about ourselves. Our identities may get swallowed up…and, because we have more important things to contend with, we sometimes inadvertently allow that to happen.
For instance; when we answer the phone (and boy, do we get LOTS of calls and correspondence) and the caller asks “Is that Hannah’s mummy?” (obviously, add your own child’s name there, not everyone’s called Hannah), we say “Yes, it is.” When actually, what we could say is…”Yes, this is Annie” (again, obviously, put your own name there, otherwise, they’ll think they’ve got the wrong number and hang up!). It’s not being impolite.
Your job as a Mama is immensely important, but so is your name, so is your OWN, individual and unique identity.
So I’m here to remind you…Yes, you, reading this (if you’re a Special Mama, that is, obviously!)…that I see YOU.
You’re possibly the cog that keeps the wheels turning in your family. You may have a wingman (or wingwoman) – a partner, husband, mother, friend or whoever, who’s there by your shoulder, providing invaluable support.
But ultimately, YOU are the professional in your individual child’s needs. Probably no-one else knows what you know…and sometimes, it can feel a little lonely.
You’re a Special Mummy. But in addition, the other daily hats you need to wear include being a teacher, therapist, nurse, PA, driver and SO much more.
But you’re also an individual in your own right…and a precious one at that.
I know that you’ve probably (and may still) trawl the internet looking for answers.
I bet you’ve read and can recite and have ascertained everything there possibly is to know about your child’s condition or are still searching for those answers.
I know you’ve sat by your child’s hospital bed and probably pleaded to a Higher Being for help. I know you’ve anxiously paced hospital corridors so much you’ve worn a groove in the flooring. I know you can carry out some medical procedures far more proficiently than someone with a medical qualification.
I know you have a constant battle fighting for the services and equipment in order to meet your child’s needs and you’ll have times where you’re wading through a mire of endless red tape, and that, in itself, is exhausting.
I see YOU.
I see a mum who wants the best for your child, no matter the challenges and sleepless nights and worries and heartbreak it brings for you.
I see a woman, trying to be all things to all people, stretching herself to capacity.
I see the mum trying to do her very best navigating her way towards an unknown destination.
The mummy who relentlessly carries out the same tasks and therapies day in and day out, because one day, something good may come of it.
Sometimes I see someone who’s so exhausted that it’s hard to function. But there’s no lying in bed in the mornings (or even through the night), you have to get up, even if you don’t feel like you’ve the emotional and physical energy to do so. Because someone, extremely vulnerable, is totally dependent on you.
I see someone who puts their child’s needs above their own and anyone else’s.
I see a woman who just wished that time would stand still…for lots of reasons.
I see a group of intelligent, articulate, empathic women; not sisters by blood – much deeper than that – who just get each other. They cry together, they laugh together, they have a jolly good old moan together, they discuss naked footballers together (sorry, private joke there, but they know who they are…dirty, dirty girls!…nothing to do with me, honest!), they celebrate together and consult with each other and pool their knowledge.
I see you, soothing your child when they’re going through something you feel utterly powerless to control. Something that you wished, with all your heart, that it was happening to you instead. I know you’d take away the challenges and pain in a heartbeat if you could.
I see you worrying for the future and what’ll happen when you’re not around.
I see you in a waiting room, looking pale and anxious, trying to hold it together.
I see your passion in sharing your knowledge and experiences and educating people about your child’s condition through your blogs and how this affects your lives. I see you striving for inclusion in a world that isn’t often very accepting.
I see and listen to you discussing the trials and tribulations of friends or family members, who simply just don’t understand and dip in and out of your life when it suits them or who just don’t bother to send even an occasional text and ask how things are – out of sight, out of mind!
In addition, there’s the equally tiresome people who judge, who stare, who make comments that are hurtful. They all add to the angst and stresses of your life.
I see a mum who tries hard to comfort and explain to her child why they can’t do the things their peers may do.
I see a woman trying hard to raise enough money each year to pay for private therapies and equipment, because there’s nothing forthcoming from our diminishing NHS.
I see this amazing, creative woman, constantly thinking outside the box.
I see you and what you do. However, there’s SO much more to YOU and that’s easy to forget sometimes…
I see your quirky (and sometimes wicked) sense of humor…your ability to laugh even at the most frustrating of things – like services not being available because of cost implications or incompetent or rude people who try to belittle you…but who often fail!…YOU GO GIRL!!! *High five*
I see YOU.
You – a remarkable, funny, beautiful, strong, capable individual in her own right.
Someone who has history. The girl who laughed and played and studied and maybe got a career. Who may’ve gone to College or University, got drunk, lost her shoes somewhere, went skinny dipping with a beautiful Cypriot boy she hardly knew, gazed up at the stars on a warm clear night, fell in love, fell out of love, flirted and played and danced carelessly in bare feet and was utterly, utterly stupid sometimes.
I see a sensitive, loving, caring woman whose hard exterior carefully conceals the constant hurting inside. That hurt that she daren’t allow others a glimpse of, because if she does, she’ll show her fragility. And a woman who has wept alone in the shower for her baby and her situation.
But every day, she gets up, gets dressed and faces the world head on.
Remember that carefree, sexy young woman with shiny skin and glossy hair who thought the world was her oyster? That was you, that still IS you…but you’re older (and perhaps, hopefully, a little wiser) and carrying some battle scars – emotionally and physically. Wear them with pride, my love. You got through it. You’re tougher than you think.
Darling, don’t ever forget who you are and who you were and who you can be…even though it’s easy sometimes to forget and lose ourselves in this world of ours. Please don’t ever say “Oh, I’m just a stay at home mom” or “I only work part time.” There’s no just or only about it. You have been blessed with the most important and full time role in the world.
We’re shaped by our experiences and the people who cross our paths – the good, the not so good and the idiots. Learn from them.
I want you to know that I admire you…and sometimes, even if I don’t say it, I (and many others around you) might even love you just for being YOU.
This journey we’re on is a tough one. Don’t ever be afraid of saying that – even if no-one wants to listen. No-one can imagine what it’d be like from reading a book or observing 15 minutes of your life or getting a degree or having a professional title unless you’ve lived it and felt it in your heart – 24/7, 365 days a year, just like you do.
Be proud of who you are and your achievements and your courage and tenacity.
And even on the darkest of days, just remind yourself to keep going.
This day will pass.
You’ve got this.
…but if sometimes you feel you haven’t, reach out to us…we’ll catch you.
We’re happy to share some of our life with you, so, come on in (but please wipe your feet – it’s the house rules), make yourself comfy whilst I put the kettle on…and join us on our occasionally bumpy journey with all its twists and turns and without the aid of a sat nav!