Article in Disabled Parent Network

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The One Show

I’m not sure what the chances are of talking to a film director for TV one week, regarding disabled parenting, and then a couple of weeks later being interviewed on the phone by the BBC regarding the same issue, for the average lady.

This recent series of events has coincided with a time of plentiful celebration of my birthday, and an enormous boost in the arrival of a surprise bunch of flowers from a company who wanted to send flowers out to people nominated by others who thought they deserved them. A mahoosive bunch arrived, the kind of size that required a Tummy Tub to hold them, and I just was overwhelmed with happy surprise. It felt like a big cuddle had arrived from the world and it had way more impact than filling two vases to the brim with beautiful blooms.

Our family got flamed hard by critics when our little boy was born. We cannot even describe how hard things were, as we are torn between telling it as it is, and protecting ourselves. We got cruddy treatment after the birth. Our care plan was disregarded and I was made very unwell by a combination of neglect and rough treatment from every single professional who should have been building us up, providing adequate care, and not making us argue with them all the time.

It can begin to strip you hard when you realise that there are that minority of people who do not support disabled parents, they undermine them, and they belittle them, and they act unlawfully to them. It can make it very difficult to get out there and interact. That massive bunch of flowers soothed a part of me that cannot help being on the defence, because it’s been attacked so often.

The first BBC phone interview, I let rip. I told them about how we were given two hours of antenatal classes, and therefore less than ordinary parents. I told them about the things professionals questioned; even when we had already described the solutions we were going to use to parent our baby. I told them how it felt, to be filled with joy and terror at the same time.

I got feedback with all the calls – about how I was not alone. There were many parents calling, frightened and bewildered by their treatment. How can you run to social work to assess you for your needs, when they are the ones who will turn that against you? Where do you go for support? How does all that feel?

Some time ago I led a song in the bounce and rhyme group I go to with my son. I felt shaky all over as I did it. I felt sick with nerves. I felt shattered that this was how hard my confidence has been hit. I have managed an afterschool club with many children passing through. I managed my own staff, and I coped with a ton of stress in the public eye.

I cannot explain what it feels like for that to be broken inside you. To be treated like a child whenever I want to get on the bus and the driver is incredulous that I need the ramp put down. Or that there was a nurse in my post birth week that refused to let me show her how I needed transferred from bed to chair my way without turning it into a long debate. Or that there was a time I was balanced on the edge of a bed, heavily pregnant to use a bed pan because the nurse did not know how to position me lying down (and refused to get assistance) and I was left in danger of collapsing and injuring me plus bump.

It wears you down. Now the flowers did some of the soothing, but the phone interviews went deeper. I was being asked about all the stuff I think about all the time. I was being asked to describe my experience and share what I thought. Then, I was being asked to allow a film crew come into my house and film my baby and I for The One Show.

I have no idea what the programme will turn out like. As someone who fears many things, for some reason slap a mike on me, and I am fearless. As long as my hair was done, I was ready. Of course they could come. It wasn’t till the night before that I realised it was Sophie Morgan who would be wheeling into my completely blitzed living room. She is like a babe on wheels. Very pretty. Very much part of my time being housebound, when I watched her model along with other disabled women.

This required much layering on of my favourite foundation and praying the camera would be been kind. Pacing in advance kinda went screwy, as the adrenaline was going like the clappers. I was buzzing like the mains had been attached to me all over.

A woman on the bus asked if I could walk at all. I did not answer her. I diverted her – polite but firm.

A man at mother and toddlers was rude to me, and I diverted him too. Polite, but firm.

I disagreed with someone at church today regarding how well the NHS is doing. Polite, but firm. I would normally have stayed very quiet and avoided the issue.

I so hope this repair lasts. It’s like finding a part of me that got lost. The part that coped when I dealt with mind blowing child care issues and challenged care commissioners in meetings to be more consistent in their guidelines. It was not fearless, and it cried plenty when it had enough, but it would have lead a hundred songs in a singing group without a flinch.

 

Sometimes us strong chickens look tough as f*ckety f*ck. We are so not. Ever cried till you nearly vomit, coz you are so blasted by the fight? That is sadly the place many disabled parents live – in a terrifying place. If they defend their needs then they expose their families. And they fight all the time. I really mean that – all the time, just to cover the basics.

I told all I could, and spilled my guts, and did not notice the cameras all around. I did notice getting miked up - that’s all a bit touchy feely in a rather ho, ho, ho way. My little boy was so angelic even I was a bit surprised. He loves the camera. He sat for ages in his bouncer and just watched and he acted like he was on some kind of cute advert for cute babies.

I told Sophie just about all I know – we talked about equipment (and the lack of it) and wheelchairs and their unique properties and bus drivers, and kerbs, and the extreme highs and lows involved raising a baby with alternative methods. I told her more than I thought I would about the treatment we had. I still aim to explore as much as I can of that on this blog. Paramount is the need to share equipment ideas.

There was much fascination over the Baby Bjorn sling I use to carry my son around with me as I wheel. It’s a perfect example of simple solution meets significant need. It requires an article of it’s own as it is both an easy peasy yet complex solution. It works beautifully. It kills my back. It cannot be used when I have a UTI in my kidneys. It is our freedom, and the best, best feeling in the world to have a baby on your lap. It is awesome in both senses of the world. I adore us wheeling together. I dread another UTI. It’s impossible for the medics to understand that my kidneys are part of my pram.

 

The sling sums up so much of the issues involved. The right solution can save so much finance, and time and energy, etc. But it may still be fragile and open to falling to bits leaving a parent stuck and vulnerable. It can be both awe inspiring and frustrating at the same time. As soon as my baby is too big for that sling I will weep. I love being the pram, even if my ribs have been through agony to the point of unbelievable at times. I hope above all that this is a time where more and more solutions explode into being, and isolated disabled parents feel they are all part of the same drive to better treatment for all.

(I will post up release date, etc when I know, etc.)

Just spoken to BBC, who say that programme most likely out 22nd November and that it looks great. Will keep folk updated.

Disability Living Allowance

Until you have been there, done it – there’s not a thing that will convey the horror the moment you
realise that form really does need filling in. Now.

For the uninitiated DLA is a benefit rewarded for two categories –  the mobility part and the care component. There are different levels of benefit rewarded to either of those categories depending on need. Not only is this a physically exhausting process to assess eligibility, it’s mentally taxing too. Having listened to people who have reached levels of anxiety that have made them suicidal filling in such forms I do not mention the effort it takes to wade through this task lightly. Nearly all first time applicants are turned down; often as a result of filling in forms without understanding what is required. Sadly, even the most obviously eligible people can fight towards the tribunal stage and still lose. Not only is this soul destroying, it leaves people who need that money to pay for equipment or carers, or special diets, or private medicines, or taxis, or a motability car, or a power chair lose out.

There is no actual stipulation as to how the DLA awarded is actually spent – the list above represents actual costs we have encountered and been grateful to cover with assistance. However, despite having trained as a CAB advisor twenty years ago, there was a huge chunk of time I was eligible and gave up on the process of applying. I once calculated how many thousands of pounds difference it would have made if I’d appreciated I needed to appeal as soon as I was initially turned down. Years later, and many welfare officers, tribunals and paperwork later, I am in a much stronger position to not only survive filling in the form; I’ve a few survival tips to share.

One of my dreads during the pregnancy was how was I going to be able to represent realistic care needs whilst maintaining the abilities I have as a mother. It’s a constant tight rope, and I cannot emphasis this enough; there are unfortunately circumstances in which a parent will require legal assistance to fight both sides of that tight rope, such is the difficulty in defending needs versus defending ability.

My last application was two years ago. I had a welfare rights officer do a home visit (contact local social work department and ask if this is available), and it took two days to fill in the form. At about the half way point we were discussing any difficulties with bathing and I crumbled. Having to talk about how frightening it is to get in and out the shower, or bath, because it’s both exhausting and risks me collapsing makes me cry every year I fill in the darned form. Who wants to confess it’s the most exhausting care need, and that it can require supervision and equipment and sometimes even just plain leaving it to baby wipes or a quick top and tail sitting at the sink to get clean?

The welfare rights officer called it a day, and we began again on day two. So, it’s a bit alarming to see that this year’s form is even longer than it was the last time. Not only that, they have switched sections round and there is an increasing obsession about asking how long each care task takes and how many days a week you need support with it. How long do you take to have a tinkle? What about getting to bed? How long does that take? Do you include the two hours you lay on the sofa too exhausted to get up to go to bed? Or the four attempts it took to go to sleep, so that meant a fresh hot bag, and more painkillers, and then toast, and man alive, now you need the bathroom and your head is filled with obsessing just how long it takes to get there, widdle, and back.

One of the best descriptions for filling in the form I’ve heard is to imagine there is an imaginary fairy around you all the time and what you are recording is what you would ask it to do. That means that although you managed to the bathroom and back by clinging onto walls and furniture, would it be safer and less painful to be wheeled there and back? Then the fairy would make you a fresh drink, and fetch an extra blanket and rub your back till you finally slept. It would watch over you overnight and help you drag yourself out your pit in the morning when your joints have solidified into stiffness and you wander just how many pyjama days are permissible in the week.

The coping mechanisms people use to bypass disability and look as functional as can be can dovetail into oblivion. It can be almost impossible to remember that not everyone has to constantly plan round aching muscles, and a fuzzy head, and impossible legs. Even if you have a partner whose as magic a fairy as can be, it can be difficult for them to give you the perspective required to putting on paper an accurate picture of what it actually takes to make day and night function. It takes an almost clinical coldness in sitting back and trying to see the perspective clearly. What would your life be like if you could leap back into spontaneously running for a bus, and grabbing a sandwich and neither of those tasks being either impossible or hmm, is that wheat free bread or not? Just as well my carer packed those cereal bars or its pass out time, and concrete will be kissed…

This is why I would stress first and foremost – do not fill a DLA form in yourself. You need assistance. At best either a CAB advisor or a welfare right’s officer. This year my husband is filling in the form as I think through the answers with him. That’s after many years experience, and after learning from a large number of trained people assisting me in the past. We survived the ESA form last year, and realised we had cracked how to negotiate our way round lengthy forms asking very personal questions together. It’s not a route I would recommend without seriously considering if it would be wiser to find a more experienced expert. It’s just this time we think we count as having both those qualities.

Even with him writing and me reflecting it’s been a week of work and we are barely half way done. It sadly is such a draining process that many people (realistically) fear relapses in their condition, and diving into depression as they contemplate all they cannot do and expose it to strangers in the form of a many paged novel. I can understand why many people chose not to apply or appeal purely because of how low it makes them feel. It’s frightening to focus on how much an illness has eaten into your independence, only to have the utter humiliation of a tribunal ahead that may or may not succeed.

Who wants to have a doctor visit and declare sometimes such outrageous claims regarding ability you’re left reeling? Who wants to face a panel of people diving into intimate details regarding toileting, or the panic attacks that cripple you, or the pain that stifles everything you do?

It’s like the ultimate anti-interview. In fact, it’s learning from a friend how to focus on how to fill in application forms for jobs and how to store examples ready to respond with in an interview that have crystallised my ability to sum up quickly how my mobility is affected off the top of my head.

It helps to break down each question in the form into a series of tasks. The further I can distance my emotion from describing those tasks, the more accurate a picture I can describe. It helps me to sit back and admit that that magic fairy would be pretty busy 24/7 if I wasn’t already using equipment, and paid help, and careful planning to make the most of the energy I have. It’s been interesting to see my husband’s reactions filling in forms. I’m quite blasé now about describing, well, actually there are times I need transferred from a wheelchair to a toilet and then assisted back. My husband is the one filling up with sadness as I describe the anxiety I have when I am unable to leave the house, or the times we’ve left public places because there are multiple allergens there.

The times I cry still happen, but at least I am not paralysed by grief describing my day to day in tiny sections. Believe me I really feel for you if you get this year’s form as a first time experience. Don’t let my blasé description here depress you, if you are gibbering by page two. It’s still a fricken nightmare, just one that I’ve processed so many times now I’m not overwhelmed like I used to be.

Some people advocate writing screeds and screeds. Personally I have witnessed and prefer bullet point statements. I would describe my walking like this; I am unable to walk any distance without severe discomfort and pain. I use a power chair as I am unable to self propel, however I require a carer to push me in my manual chair when I am too exhausted to use the power chair. Taken a while to get that into a bullet point, but I could recite it in my sleep now.

I do not even bother to fill in the distance I can do and the time it takes. I’ve witnessed people being driven to a straight piece of road and actually measuring distance and time with a stop watch so they can fill that part in. That gives a skewed picture of someone who may have to rest for hours after walking a totally unusable distance. If you hurt, or you need to rest, or you are at risk whilst walking – that might mean yes technically you can walk a bit, but is it useful walking? There are many situations that might mean you are eligible for the mobility component that are not immediately obvious – seriously, do not fill this in without proper advice. Also pride has to go out the window. I’ve watched too many people crawl along supermarket aisles clinging onto shelves in severe discomfort to know that it’s actually very easy to underestimate just how compromised your mobility is. Sadly, there are plenty health professionals out there who add to the confusion and will not support a person as they come to terms with how little their legs will propel.

As I am a wheelchair user, I know some of what I’ve written is too watery to be useful to those who are mobile, but only just, but don’t require a chair. I apologise to those who are reading this longing for the bullet point that sums up their situation in that department. Having had several forms of mobility problems that have fluctuated over the years you have my deepest sympathies.

If the form does not work for you, then you can sometimes adapt where you think it is appropriate. E.g if the yes/no boxes don’t work on a question, we score them out and write N/A - not applicable. Then we write a small bullet point in an appropriate space that we feel summarises with better clarity. It’s a method I’ve seen used by professionals and often avoids confusion. Today we adapted the pages regarding walking outside and requiring assistance, and converted them to convey assistance I need whilst wheeling. Also, please don’t hesitate in describing how your mental health is affected by your physical challenges and vice versa. This is not time to be stoic. Where appropriate I describe levels of anxiety, etc and the reassurance I need. That counts as assistance just as much as being made lunch or having help getting dressed.

Cynical, moi? I think a lot of the form is written by people focussed on catching folk out. And I don’t mean in a fair, ooh lets catch the cheat’s way. I mean in a asking people the same question over and over in different way’s way, till you are so exhausted you convey your best day ever by accident. The general advice is to avoid that at all costs – that you need to convey the worst day you have (on average). I’ve read people argue against this advice, but having listened to many people tell me they are sick, but not as sick as another poor bugger they know, etc, I am convinced that the majority of disabled adults minimise their needs way more than those who would be prone to exaggerate.

It turns out that although I’d hoped we’d licked this form into shape a while ago, just now has been a good time to summarise my situation. I have an infection right now and am suffering various side effects from various medications and there are complications with my pain management that are exhausting me. I’m adapting every game possible so I can play with my baby on the floor, and manage safely. My husband had to work at home for a period of time after an afternoon of complete dizziness, lack of hand co-ordination and my speech phasing in and out of recognition. I feel vile. I’m ever so grateful I have the kind of husband who walks so well with me through those weeks, and who wants to make it better, and who would love to send the blasted form into outer space, if it made any difference. It’s the time where all those carefully squirreled away meals in the freezer are fantastically useful, and I’m glad I’ve worked so hard to be prepared. Despite the gruesome task of form filling, I am also able to focus on other important matters. Our baby likes mummy lying down and playing very slow, very gentle games. He’s not once expressed concern over how many days it’s taken to get my hair washed. He’s far too caught up in chasing daddy hoovering or licking the pram wheels to even notice I’m conserving energy as much as I can.

The whole subject here is enormous – I appreciate any feedback, and other tips to pass on. And if you too are desperately trying to calculate how long your last trip to the toilet took, you are not alone. You are also entitled to hate this blasted process every single bit, and yet laugh with your child as he gives you a sneaky cuddle and sneaky dribble down your back no matter what.

 

Fame

Last night we took our baby JJ to house group. We’ve done this as many times as possible since he was born. JJ is a good sleeper…once he’s asleep. So, we were really conscious of him staying up as late as he could when he goes to people’s houses in the evening, just because it’s light and there’s chatter to join in with. At home, if he’s in his cot, the room is dark, his music thing is playing, and he’s a toy to play with, and someone pops in regularly to pop his dummy back in his mouth, then he will fall asleep. But any whiff of a party and he can keep the shut eye away for hours.

So, we decided that rather than heft a travel cot with us, we would try a blow up toddler bed, so he had somewhere to lie down on in a darkened room. We wrapped a blanket over it so he wouldn’t try to snuggle under the duvet bit, and tucked him into a baby grow bag (like a sleeping bag for babies). One bottle later, and a bit of dummy back in back out and he slipped into the land of nod. The window we have for taking him places has been fairly wide as he’s a bit of a cheery chap who adapts to different places fast. Everyone came for a gawk later – there is nothing as sweet as watching a sleeping child. If anyone thought our method was odd, they didn’t say. We have a lovely group, and those times of fellowship include cracking dinners, fast chat and lengthy coffees. This among other activities has led us to trying to be as creative as possible in making it work for all the family.

Adaptability is the name of the game for both me and JJ. Today we kind of took it to the hilt. I will be writing on the blog a lot more about how we got to where we are, because days like today make it look as if it’s fairly smooth going getting out and about. This has been part of a process, and it’s just that today was one of the highlights.

Tomorrow is the party for my husband’s birthday. We are having afternoon tea. It’s booked for twelve adults, one child and one baby and with one serving of wheat free sandwiches. We had stuff to finalise so after a very slow morning JJ and I set off. It was a risky time to get going, as we were heading towards the bus stop at noon. That’s translates as – JJ likes a good lunch at noon and I was mad to get a bus at that hour. I had brought with us one of Ella’s Kitchen pouches and a spoon so we could munch on the completion of our journey. We love Ella’s pouches. Perfect travelling food. And yummy too. I know so, because JJ says mm, mm, mm more eating pouches than anything else.

The bus arrives and we are informed they have a wheelchair already. No worries, say I, when shall the next bus be? Driver reckoned about another ten minutes or so.

JJ was in the Baby Bjorn carrier facing me. This meant he was on my lap and very secure. I had a pouch. I had a spoon. I had a bib.

Well, then, I thought, let’s have lunch.

Ooh, that’s brave you say. Yes it was – not only because the pouch had apples and carrots, it also had parsnip. And we hadn’t done parsnip yet.

I prepared the way, and the spooning began. JJ very happy, mm, mm, mm.

I will put in brackets the interactions of the day, so you can see a typical day, and the kind of conversations I have out and about.

(Woman at bus stop approaches. She tells me something incomprehensible about my bus card and a folder. I nod, smile and thank her. Spoon, spoon, spoon. I realise my bag is on the ground exposed to wiley robbers. I cover the bag with my foot. Oh, goes the woman, do you want that bag up? No thank you, smile, smile. She boards another bus).

(New woman approaches. She is baffled. What the heck are we doing? I show her the pouch. Oh, she says, I thought that was juice. How, she surmised, was it possible to spoon juice into a baby? I wax lyrical about the magical pouches till the bus turns up).

It’s going well. I board the bus and it’s one of the really big ones, which means I get to show off. I board, and then reverse park into the wheelchair bay, whilst the bus is moving. The journey is smooth. Well, then, I think, let’s continue. Spoon, spoon, spoon. Very happy baby. Food and changing scenery. I wander if this will upset his tummy but reckon that as he is upright, this should hopefully be ok. We finish the pouch, and I tidy up. The trickiest bit was trying to take his photograph afterwards. Nobody spoke to us on the bus. If you act weird, then sometimes there is a threshold. You can tell me folk thought nothing of it, but to be honest I think wherever we go, folk are trying not to say – ooooh, look at that baby, and the mummy in the chair. I was glad we got ignored; coz spooning food into a baby that likes to chat can be a challenge.

We decant and then we negotiate some terrible kerbs, but the shop we needed to get to had shut down. Plan B. We find a shop eventually that has birthday banners. I yank out my grabber that is tucked into a pocket at the back of the chair as they are up high. Two banners down, then eventually someone comes to see if we need help. Good. Coz as much as that is the ultimate in independence – it’s obvious I’m not that good at the grabbing trick from a seated position. We finalise our purchases and then I have to explain how to get the grabber back into the pocket. It has its uses, but suspect in the long term am just going to have to keep asking for help with stuff up high.

Time to get a cake, so we go to the supermarket, and after choosing that that we go to pick up a fresh Ella magic pouch for tomorrow. An assistant approaches, and full brownie points for asking after was there anything else, but when I said no, he accepted that and moved off without too much hovering. However, not before confessing he loves Ella’s pouches too! When he can’t be bothered using his juicer he whaps down one of the fruit ones. True dedication to your five a day.

(We leave and then the class act begins. A woman approaches. JJ is asleep now, after a bit of giggling and a sing song from me, as we whirled along. Oooh, lovely baby. Yes, yes. Such long eyelashes! Nod, nod. They are. I tell her about his big eyes, and what a flirt he is. So, she asks, how do you manage? She answers this herself – you just do, don’t you?

You know people in the shop were talking about you, she tells me, and saying, ooh, look at that baby and the mother in the chair? I smile. Man alive, it’s true. And I don’t even see it happening, never mind hear all the comments.

She then asks the question that does bug me, because it is no ones business, but I’m in the mood for a wee chat. Can you walk at all then? I explain how far my mobility stretches and talk a bit about how I’ve set up the house, etc. Ooh, aren’t, you marvellous, she says. She refers to my ‘Brave Wee Soul’ sticker on the back of the chair and tells me it’s so true.

Then, she touches my arm.

Oooh, she cries, I’ve touched a famous person!

Ooh, you’re famous!

I don’t know. I think I blinked a bit. It was sunny, and I had enough smiles left.

So she cries as she departs, how could I be famous then? I know, I could get pregnant at eighty four. I wish her all the best)

We deliver cake, banners, etc, and visit the disabled toilet and have a quick nappy change for JJ, before boarding a bus to take us home.

Famous or not, there ends my tale of out and about. Delighted to say, food stayed in the happy baby, and not one carrot stained item to be seen.

Quiz

This is very useful for practicing for DLA/ESA

‎1. Itching
Do you have an itch? Is it behind your ear? If so please can you define if it is
a) Itchy?
b) Moochy?
c) Tiny?
d) Totty
e) Insignificant.

‎2. Bathing
What exactly do you wash? Bits? Bits and bobs? Up and down? Left? Right? All over?
a) I prefer a car wash
b) The cat licks me all over. I like it. I pay my cat as she is my P.A.
c) Baby wipes every time.
d) I use a scraper and olive oil
e) Bird bath (am applying for accessible one, due to recent perilous situation).

‎3. Sex
Obviously sex takes energy, and in order for us to assess how on earth you conceived you need to tell us in full and frank details how you ever got it on if your legs are made of cr*p?
a) I use Satnav
b) Hoist plus Velcro
c) Velcro plus clingfilm
d) E-bay
e) 4-ply and a bit of superglue. Plus fruit.

‎4. Eating
You do eat don’t you? Everyone likes to eat. It’s what normal people do. And that’s what you are. You’re just a Normal person who is ‘DISABLED”. Well done looking so normal, when, um, you’re not.
a) Jelly babies.
b) Jelly babies on toast
c) Satnav
d) I suck the dew off lemons
e) Whatever is left on my child’s plate.

‎5. And finally. Questions I have genuinely heard asked or that other people have been asked in actual tribunal situations.
a) So if your knees are sore, then how do you kneel down to pray (in church)?
b) How did you start dating (your girlfriend?)
c) Your bowels are loose X many times per day, (Not a question. An opening statement, straight after introductions)
d) Let me just test your babinski reflex (during a medical), with this. This was the doctor’s car keys.
e) You are too sick to complete this medical. Therefore you will have another one so we can assess how sick you are. (this happened to me. It took three medicals).

 

What is a SOYA parent?

Are you a parent with a disability? Do you do an amazing whack of stuff with your A*s on the sofa? Are you a wobbly bod? A bendy bod? A knackered being? Always in fricken pain? Then, you too are a S.O.Y.A. mum/dad.

You parent with the tiniest amount of energy and make it look enormous. You Sit On Your A*s a heck of a lot, and yet somehow dinners happen, children get fed, and you cope.

You deal with a deluge of cr*p on a daily basis. It is your role to negotiate a million bits of awkward body wrangles and smile like you are in a very glam film.
...
Why has this group been created for you?

Because when I was pregnant I thought it was a great idea. I was full of huge hormones. I fantasised about making a wee group and badges, and stuff and it got me through the weird and tedious mindfield that disabled parenting turns out to be. It turns out, the S.O.Y.A. mum in me still needed to make this page and witter on in my own wee merry way.

The Difference

The Difference

The difference is as clear to me as Gaydar. I can see it as soon as it happens. I want it to be Not True.

I want it to be my imagination.

But as soon as I detect that look, I feel queasy.

Some of you know me as Fairysparkle. I used to have a blog called Miss Fairy's Waffle at http://rhodiola.blogspot.co.uk/

I used to be able to access that (ironically), but now can't, due to fuzzy memory as to how it got set up in the first place. I have had many folk since saying, ooh, see that mad story you've just told me, you should blog about it.

Blog's take time. They take imagination. They take angst.

We had plenty of angst going on. I have jumped several years since then and although I'd like to think time has been kind, and I look not a jot older, there have been some lovely moments and some crashing lows, which means time sent us a mixed bag.

The biggest high was getting pregnant. Of course getting married has been fantastic, but this was like a whole load of icing on the top. Long story short, it took time till we found our wee baby. It was like he was hiding and we had to unlock a whole bunch of stuff to find him. When we did, it was like the deepest joy had finally found it's place and settled in, just where it belongs.

Whenever I post about our baby, my heart constricts.

It tightens because I know how much we longed for a child.

It was desperate. It was like living on a knife edge. It was like mourning before we began, because like I said, it took a while to find him. It wasn't till the very last minute we saw that all the hopes we'd poured in this pursuit actually had a purpose. So, I know, that there are hearts out there that beat every single day crying - where is my little one? I know, that even reading the word 'pregnant' can make a stomach turn. That there is a well of gratitude alongside the angst that spurs me on. It makes posting negative news very hard. No matter how sad or tough a situation is, I do know that we are very blessed. We got to meet our little one, and we will never forget the tears shed whilst waiting. Longing to parent is one of the vilest pains a person can endure.

I live on another kind of knife edge too. I live with chronic ill health. Life long disability. Life long misunderstanding.

I used to work in childcare. I was responsible for well over a hundred children over a six year period, first as a play worker and then three years in management. I was pretty poorly all of the time. My mobility was never great, and I ran on so little puff I have no idea how I managed it. Just before I got married, my legs went from wobbly to cr*p.

I was swimming every fortnight, and walking as far as I could daily and then over a period of months, I became housebound. I have no idea what made my mobility deteriorate, although there were factors that triggered a relapse that I can identify. Didn't explain why this time the relapse took away whatever makes legs go and this time my mobility did not return.

I have very, very limited mobility now. I can shuffle around a small flat with a stick, and a prayer as I also can collapse with fatigue with or without warning. My head is full of concentrating to get from A to B. I have literally no idea what walking without concentrating is like. I also have no idea what it feels like to walk to the local shops. Or to the end of my garden without fear. It's like this time, the legs went, and I lost the memory of walking along with it. Even in my dreams. Without a wheelchair, I am stuck. Housebound. Trapped.

The rest of me switches on and off in availability, and it hurts in various places all of the time. 24/7. No idea what energy and vim and co-ordination feels like. Or not hurting.

I  therefore have experience of  carrying out childcare whilst having an invisible but very real disability. Now I am a parent with an obvious disability. I have swapped. You can see me, coz I has a big wheelchair stuck to my a*s. A beautiful chair, and one that runs on electricity, but none the less, a fricken mobility aid.

And that's what makes the difference. I know how someone looks at me standing up and looking 'normal'. I now know how they look at me in a wheelchair.

So, it's a shock to realise that it really does happen. Being a wheelchair user has led me to seeing a look that instantly lets me know I am one of 'them'.

Not that invisible disability is easy. Oh my gosh - it's awful. It's just that this look opened up a different world.

So now, with a six month old son, and a heap of cr*p treatment, I decided to create SOYA mums/dads. Coz sometimes you just have to find yourself a new label. Other than - ooh, but you're just like normal like "other" mums. Except, you're not.