Additional Needs

In the Mind of a Special Needs Mum

Posted by Ceri-Ann Brown on 14th December 2018 Additional Needs, Advice & Support, Disabilities

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It's night-time. She cleans her face and stares at reflection in the mirror; half focused, half somewhere else entirely. "Your eyebags are awful" she thinks to herself. Another harsh judgement.

"Really," She thinks, "these are marks of honour for many sleepless nights endured.

They're also signs of dehydration - drink less damn coffee" she reminds herself, knowing full well that her first morning instinct will be to make a hasty retreat to the coffee machine before facing the day. She lets out a sigh and plods to the kitchen to prepare the last medicines and feed of the day.

Her legs feel heavier and each step reminds her how exhausted she is both mentally and physically. Her back is sore from lifting and her limbs feel weak and each task feels laboured.

Though she is tired, her mind is racing. Out of nowhere a memory pops into her head. She's lying on a hospital bed wailing for help as she's rushed down a corridor for an emergency c-section.

Her only sight is the passing lights above her head. Her grip tightens and her heart races, her eyes become watery. Quickly she suppresses the thought.

PTSD. Birth trauma. It never leaves you.

She feels a lump in her throat and is overcome with emotion - fear, panic, grief... relief. She swallows, takes a deep intake of breath, and refocuses on the task in front of her. "It's over. Everything is fine." she chants to herself in her head repeatedly.

Snapshot images continue to flood her consciousness - probes, beeping sounds, incubators, it's dizzying, but she perseveres with the task in hand. She keeps herself present by acknowledging objects in the room. Microwave. Kettle. Toaster.

"Am I losing my mind?" she wonders to herself, trying to re-affirm her grip to reality. The whole scenario was enough to remind her to take her own medication, and to check when her next therapy session is.

She wants to get better desperately, she doesn't want to have these thoughts. They can come at any time, and with no warning. It can be debilitating. She feels sorry for herself, but also frustrated at not being able to control her own mind.

She pops out 3 tablets from the strip and puts them into a purple 10ml syringe.

She draws up the water with almost robotic precision. She does this so frequently in fact that she can afford to let her mind drift elsewhere again. She glances around the kitchen counter as the tablets dissolve, and notices a letter. It's an appointment letter for an important hospital appointment next year.

In her mind she begins to plot potential outcomes and what she is hoping will be achieved. She thinks about the journey - it's a hospital she hasn't been to before.

Immediately the anxiety awakens as she plans in her head the conversation of asking her partner to take more time off work to accompany them. She wonders about the parking, the facilities, and whether they'll be able to find where they are going.

Leaving town scares her. She knows how irrational it is... but home is what she knows, it's her safety net... she has relative control here.

Funding, waiting lists, unreturned phone calls, paperwork, clinics - all key words in her repertoire now. She thinks of the weeks ahead.

Special needs dentist for a descaling without sedation - will she aspirate? Paediatric clinic - how soon will we get the home nebuliser? Flu vaccine - will she be well enough for this one? We've rearranged 3 times already. Ordering more tube feed supplies - will we have enough giving sets until then?

So many logistics, so much planning. There is never a quiet week...

She finds herself part amused at the irony of so much planning when actually life couldn't be much more unpredictable. Every eventuality has to be considered, every worst-case scenario must be prepared for. There is always a contingency plan. She can't afford to be unwell.

She is struck by the paradoxical nature of being so busy and meeting so many people; yet earning so little and feeling so alone. She misses normality, and yet she feels guilty for complaining - she knows how lucky she is, how privileged she is, but still her heart feels heavy.

These conflicting emotions take a toll on her - they almost justify the eyebags.

Her mind goes back to when she worked in retail. Her favourite customers were the ones who seemed the loneliest.

It had always pained her to think that she may be the only person that the customer gets to interact with that day. To remedy this, she always made extra time and effort with these people. She is now one of those people - those people she pitied and wanted to help.

The loneliest people are usually the ones with the most interesting story to tell

You can see a visible change in their faces when they've been validated as the important person that they truly are. It's beautiful but bittersweet. She hopes that others feel that way towards her, because sometimes now she feels invisible, unimportant, even an inconvenience.

She shrugs off the thought... don't think about work and normality, don't get nostalgic... it wasn't always easy back then either.

She washes her hands and goes to administer the meds. "Administer" she thinks. What a medical term to use. She's not a nurse, she's mum... she's not even just mum, she is her own person.

She goes to give the meds... every word is a potential trigger for her to start over analysing, every topic is a sore spot. She has become over sensitive and irrational. She wishes she could leave her own mind for a while, to take a holiday from herself.

The bed is hard to open. It's a huge high sided bed with multiple openings.

She feels her eczema on her hands pulsate with pain and burn as she puts pressure on the latch of the bed. "Stupid giant bed" she thinks to herself whilst feeling simultaneously so grateful to have this piece of equipment. Beds like this don't even exist in hospital for her. She can't help her child be safe there.

She is sick of feeling "grateful" for basic necessary provisions and feels full of anger at the lack of facilities in the world.

Home is the only safe place she can keep her child. She feels isolated.

Why is it a privilege to have the same accessibility, dignity and quality of life as everyone else? As she closes the bed, she also tries to close down her persistent angry thoughts. She stops for a moment to admire her sleeping child. Her anger and resentment are quickly replaced with a deep love and pride.

What an angel. She watches her breathe and works hard to not think of the times she has struggled to breathe. "This is a peaceful moment - keep it that way" she instructs herself. She hopes for a better night than the last 30 nights. Medically, it has been an exhausting time. Interventions throughout the night have been constant.

She wants to go to bed, but she knows that the insomnia, the nightmares, the need to suction her child and give her an inhaler will take over. Going to bed seems futile and yet so necessary.

The used syringes are thrown into the sink to be cleaned tomorrow, the light is switched off, and she retreats to bed. She would love to read a book to take her mind to a different world, to a place of escapism, but she can't.

She's too tired to indulge... there are also more important things to do than read a book. Reluctantly she turns off the light and struggles to get comfortable.

Every night as she tries to get to sleep, she tries to replay the day in her mind.

It helps her feel productive to know how much was achieved. It triggers her to think of the next day - what needs doing, what will the day hold in store? Will she manage to do it all? So what if she doesn't... and yet at the same time she has such huge expectations of herself. She feels a compulsion to prove herself and justify her role in the world.

She often imagines her mind as a brain full of little people working away. They work really hard, but they are underpaid, overworked, and short staffed, and this makes them a bit scatty and disorganised. She is amused at the idea that this reflects the health system and also the world that she lives in.

Every sound outside the bedroom reawakens her. Does she get up and check? She wants to conserve as much energy as possible, but she doesn't want to take any chances. The decision making continues into the night as she and her partner navigate their way through the early hours intervening when necessary.

Eventually, she drifts off.

Her mind calm enough to let the resting commence.

Goodnight.