From A Mother To Her Mother

Nothing really sets you up for it.

Looking back the actual process of giving birth was the easy bit for me.

I read books and bought the appropriate bits and pieces for feeding, changing and nursery.

But then it hits you.

This tiny little life is yours to look after.

The responsibility can feel overwhelming.

I now have three adorable bundles aged between five and nine years old.

It’s fair to say we’ve had some challenging times and a series of diagnoses.

But, it’s really only in the last few years or so that I thought about what my own mother will have gone through having my brother and I.

Not long ago, our middle son David, had to into hospital.

It was a simple procedure that meant he had to have a general anesthetic.

Something that thousands of people have every day.

However, David is autistic.

He didn’t understand what a hospital or doctor was, never mind what would happen when he had a general anesthetic.

As his mother I was simply beside myself.

I felt sick as I held him down while he tried to fight the gas mask and screamed through his dummy.

I cried as I felt my son’s body go limp.

And then after it all I thought about my own mum.

When I was less than a year old, I had an operation on my hands so I could use them.

My parents still have a photo of little me, sitting with both hands all bandaged up.

As I remembered this photo, I was in awe.

It’s so easy to underestimate what mums go through.

I’d never before thought of how my mum had felt when I looked at that photo.

Now, I absolutely know how she would have been there for me.

My mum was there through several operations and general anesthetics for me.

She’s went through my life with me even though I didn’t realise it at the time.

And now I’m a mother myself I understand more than ever why and often need her help and guidance just as much as before.

In many ways, I’m still a little girl with bandaged hands stretching out her arms for her mother.

Now I’ve three kids of my own to look after too.

My mum may not have raised children with the same challenges that mine face but she’s still here supporting and loving me.

And I’m ever so grateful she is.

Snow Days

Whilst Social Media is going crazy with pics and videos of sledging and snowmen, we sometimes find ourselves in a very different world.

Getting out and about with Heidi (quad CP, trachi, gastrostomy, non-mobile, and the usual list of extras!) can be tricky at the best of times; there‘s no such thing as travelling light!

Wherever she goes she has a suction machine and catheters, feed pump, emergency trachi kit, medicines, then the usual change bag, toys etc. with her.

So, the idea of getting stuck anywhere is pretty daunting.

On Wednesday, the bad weather that had been forecast hit.

We had snow.

Everywhere looked pretty, but my practical head wasn’t so pleased.

I’m often somewhere in the middle between trying to live a “normal” life (I don’t really like that word but hopefully you know what I mean) and being mindful that Heidi does have complex needs and sometimes adjustments have to be made.

The snow however got me thinking all sorts of things; what if it comes down really quickly and we get stuck coming back from school?

Could I push the wheelchair up the hill and carry all the bags on my own?

Would anyone be about to help me?

What if the suction machine ran out of battery?

What if we have to stay over somewhere and I don’t have enough feed or medicine for her?

What if school think I’m an over-reacting Crazy Mama for keeping her at home?!

I was therefore most relieved when the text came through the following day to say that school was closed due to the extreme conditions.

Phew.

Decision made and I could stop debating all possible outcomes and worst-case scenarios.

Our snow day was however pretty uneventful.

In fact, it was pretty much like any other day at home.

It was far too cold and blustery to give Heidi a taste of the magic (cold weather can make her quite chesty, and I’m clearly a bit of a wimp), so instead we sat and looked out from the cosiness of the lounge.

I briefly felt sad that she wasn’t able to sense the excitement that a day off school should bring, but then it hit me that she is going to school (when weather permits).

That in itself is enough.

It’s something that at one time we didn’t think would be possible.

We didn’t think that the storm we experienced early on in Heidi’s life would pass.

We didn’t think that we would see sunshine again.

We didn’t think that we would ever laugh or smile.

We do. We do a lot.

So yes, being stuck in for a few days may not be ideal, but we’ll use that time to count our blessings.

Probably should do a bit of housework too…!

Hope you are all staying safe and warm!

Roll on summer hey?

Blogger’s Block

Friends have been asking me when I’m going to write some more blogs.

I had come to love blogging about things that are important to me, about my experiences and feelings, but because life went systemically crazy, I couldn’t risk sitting down and writing down my experiences as I didn’t trust what I might say!

Nonetheless, it was constantly on my mind that I wasn’t able to get down on paper, what we were going through, over the last year.

Blogging for me during Jenson’s first three years of life was a therapeutic release. It allowed me to retain some sense of sanity and expend some pent up anxiety and perhaps even resentment and anger.

So here I am sitting at my computer again with a frenzied worry that I’m not going to be able to recapture the writing spirit that I harnessed previously.

I have so much to say, so much has happened… But I’m sitting here staring at the keyboard, not really sure where to start.

We had a baby.

We brought a typical child into our world of special needs chaos, not unfamiliar I’m sure, to many readers.

The whole experience has been a rollercoaster ride of emotions, ranging from pure celebration of all things ordinary, through to the desperation of how I would possibly get through the day.

Who would have thought that increasing the number of humans in our family by 33% could increase the potential for stress, chaos and disorder exponentially?

One minute I’m rejoicing the delights of the sheer normalness of a baby achieving milestones, while breathing a sigh of relief that as each day passes I can’t find a reason to question his chromosomal make-up.

The next, I am spoon-feeding and nappy-changing a four-year-old who’s launching toy trains at his baby brother while playing hide-and-seek in my tupperware cupboard.

It is a petrifying thought that I perpetually and relentlessly have two small people whose survival and development rely purely on my actions every single day.

Some days, it quite simply feels like they are sucking the life out of me. Other days, it is the most joyful experience I could possibly imagine.

Probably the hardest part of these last few months has been my inability to cope with anything outside of the house when I don’t have a second adult to help me.

Coupled with people’s inability to understand why this is the case. To this day I still have friends that ask ‘do you and the boys want to join us at Costa for a baby-chino?’

A day at home with no other adult around is like a life sentence, made all the worse by the guilt I feel for not providing stimulation, fresh air and fun.

But, the great moments so far, far outweigh the not-so-good times.

Like when the oldest decides that instead of climbing into bed with us at 6:45am, he will head straight to his baby brother’s bedroom, reach into his cot, and say the word ‘brother’ for the first time.

Or when the youngest laughs with glee at his big brother who is splashing frenziedly in the bath, and signs for ‘more bubbles’.

I know that this period of time in which I am experiencing tumultuous ups-and-downs is relatively short lived – although feels like a lifetime right now – and before I know it I will come out of the fog and into another chapter. Not necessarily an easier chapter but a new set of challenges, joys and chaos.

I’m reminding myself that I’m playing the long game.

It will pay dividends and we will all be winners.

One thing is for sure though, my concerns about bringing another child into the world, and into this crazy family of ours, was the best thing we could have done.

For all of our sakes.

Mum’s the Word

Nothing too unusual there I guess, having a baby is a pretty big deal.

I’d prepared as much as I could – read all the books, been to the antenatal classes, given some plinky-plonky yoga a go ( – totally out of my comfort zone!).

I’d even thought about how I was going to break the news to my mum once baby arrived.

I was a first-time mum, she was a first-time grandma.

This was going to be the best phone-call ever!

Only it wasn’t – it was the hardest I have had to make.

Trying to stop my voice from shaking as I explained that we had had a little girl (at 11pm on Mothers’ Day!), we called her Heidi, that she was now a grandma, but that our precious arrival had been whisked to NICU for cooling treatment and that basically I didn’t have a clue what was going on.

(Later diagnosed with HIE, hypoxic ischemic encephalopathy – a lack of oxygen to the brain).

Heidi wasn’t with me which was hard, but I think for my mum it was even harder.

I may be a grown up but I’m still her little girl and she knew I was broken.

Left completely helpless at the end of the phone must have been so awful.

It’s only when I look back now that I fully appreciate just how tough those early days and weeks must have been for her.

I was in the thick of it (with hubby Steve), and we knew minute by minute what was going on.

We were talking to doctors, learning from nurses, and getting our heads round the situation.

My Mum (as well as my Dad, Step-Dad and Steve’s Mum and Dad) were outside of the bubble.

We tried to keep them up to date but sometimes the hours disappeared and you realised that instead of texting or phoning them, you had been watching the monitors as the numbers went up and down, keeping everything crossed that the alarms didn’t go off.

Just like I wanted to help Heidi in any way I could, my mum wanted to help me.

To begin with that was by giving big hugs and crying with me.

As we moved to the Children’s Ward as Heidi stabilised, it was sitting with me and bringing in sandwiches.

When we came home (after 8 weeks in hospital) it was joining me in a celebratory glass of bubbly (badly timed as it was when the Health Visitor called round, oops!), and helping with the ironing.

As the time has gone on it’s by being gastrostomy and trachi trained so that she can look after Heidi when I have to work.

The biggest help is that she has laughed with me.

Sometimes at the most inappropriate times, sharing a funny moment that only the two of us would get, but we have laughed so hard that tears stream down our faces and our sides hurt.

I love that.

I love that despite the tricky journey we have found ourselves on, we can still find joy in things.

I love how she is Grandma Glitter to Heidi (a nickname that stuck after her slightly sparkly bronzing powder left its mark).

I love my mum.

Being a Grandma may not be as she imagined, but it’s a role that she has embraced and is great at.

I still think that life, the situation, is easier for me that it is for her.

I know that I’m ok if that makes sense, but I guess it’s always a Mum’s job to worry.

Wishing all the mums and mums’ mums a very happy Mothers’ Day – wherever your journey may take you, I hope you get through it together.

Mother’s Day

These women are somebody’s ‘Mother’.

Sometimes they may not have birthed the one that calls them ‘Mother’ , but they are still very much ‘Mother’.

Sometimes they are the ones who have no children , for whatever reason but they are a ‘Mother’.

I think of her often.

It was the 2nd January 2005 , when I met her .

I didn’t want to be there , I was scared and confused .

They talked of my water breaking and the dangerous situation I was now in.
I felt it was my fault. I was under huge stress and had already lost one of the two that were growing inside me.

“We will have to keep you here , at least until it’s safe to deliver the baby ” the doctor firmly told us as she looked at my scan.

The baby was due March the 15th.

I had a toddler by the name of Ethan at home to care for too.

I didn’t want to stay but a choice was not given .

Bed rest they had called it , for me it felt like anything but rest.

I was brought to a room which consisted of two beds ,one TV and a flimsy curtain which separated the two beds .

This was to be my home for the next four and a half weeks or more.

I was heartbroken.

I was wallowing in self pity when the voice from the other bed, softly introduced herself.

“Hey I’m Deb ”

Her belly was much bigger than mine .
Her dreadlocks were a beautiful mixture of browns and burgundy , when the light shone on her hair ,it reminded me of Autumn.

She smiled as she rubbed her belly.

We had a long chat about everything from the unfolding tsunami how her friend had rang her partner to say that they were safe , we spoke of the programmes we both could enjoy and of course about the hospital food we both tried to eat.

My first day there wasn’t so bad with Deb regaling me of tales about her fascinating life .

She was lovely and by the time night fell, I was feeling much better about my new surroundings mainly because my roommate was a friendly happy mammy to be .

A week had passed , Deb wasn’t as into Desperate Housewives as I was but she didn’t mind it being played on the TV and often was asleep by the end of the show.

We became buddies and spent a lot of time talking about being trapped in the hospital.

Deb wasn’t new to this maternity side of the hospital, one you only see if there’s a complication like mine or Deb’s .

I finally asked why she was here after we discussed my reasons for being here.

“This is my eight pregnancy” she rubbed her belly and smiled.

“Wow” I was amazed. Eight babies my mind jumped but yet I had not seen one of her kddies when her partner called by.

My heart sunk as it dawned on me why her husband never bought any kids with him.

“This is the furthest we have gotten. So it’s looking like Junior here will meet us ”

Silence fell over me as I tried to figure out what she meant .

“Oh Ger ,it’s ok ” my face clearly betrayed me .

“Honestly , they have had me here since I got over the three months , we’ve literally weeks to go” she was excited .

I felt like a fool, complaining the whole time I was in here with her .

“I’m sorry” my lip wobbled.

“Don’t be . It’s worth it ”

She was glowing .

She was beautiful .

And she was definitely a mother.

On my ninth night with Deb it happened.

The flickering of the lights and the hushed whispers woke me up.

I rolled onto my back and slowly pulled myself up. A nurse stuck her head around my curtain and told me to ‘go back to sleep’.

I couldn’t .

I could hear her. She whispered at first, then as the orderly came in , to wheel her bed , I heard her cry out , “No, please no”

Her voice was that of a grieving mother; I could hear her pain.

I closed my eyes and said a little prayer to whoever or whatever was there, and asked that Deb be given her child.

I didn’t sleep that night.

It was 6am when the bed was brought back in, empty.

“What happened ?” I asked the orderly who shrugged his shoulders and told me he was asked to bring in a fresh bed , that’s all he knew.

I was permitted to take short walks up and down the corridor a few times a day , slowly I got out of the bed.

By now, I knew a few of the nurses , “Ladies what’s happened with Deb?” I asked, almost afraid of the answer.

They titled their heads and told me that they didn’t know.

I never saw Deb again.

It was lunch time by the time my now husband D and Ethan came to visit me.

I had told D the story of Deb from the night before . I needed to know where she was and what had happened . I could feel my anxiety growing and my imagination running wild.

“I will go and see what I can find out. For all you know it was an emergency section and the baby is fine. Think positively, please honey, it’s not good for you to be so worked up” he rubbed my leg as he took Ethans hand and went to investigate.

He stood in the doorway watching as Ethan ran to me with some chocolate and a magazine .

I kissed Ethan and gave him the chocolate as his big blue eyes smiled at me “Oh good mammy, we share?” I nodded.

“Ger, I met Debs partner. I am sorry honey.” he slowly walked towards my bed and sat.

“She lost the baby.”

I cried.

“Eight. That’s eight times they have gone through this” I rubbed my eyes trying to make sense of something so senseless.

D nodded.

We sat in silence as Ethan climbed the empty bed and demand TV be put on.

I stayed in that room for another three weeks with different women coming and going , but none were as friendly or as wonderful as Deb .

Deb taught me that a ‘Mother’ isn’t always the one who birthed you, or even adopted you , or even married your father …being a mother is within you…it’s that kindness, understanding , patience and so much more which I saw in Deb that made her a mammy.

There are a lot of mothers walking amongst us who have yet to meet their children.

Deb also taught me that carrying a baby of my own was something to be treasured , something to be treated as a miracle.

Thank you Deb.

For all the ladies out there just like Deb, I think of you often .

Deb, wherever you are, I hope you are happy and are having a special meal on this Mother’s Day x

Happy Mother’s Day to you all x

A Letter to the Mother of my Children

I watch you in the morning, as all the children come in and just lay on you watching TV, each with their own spot.

Each getting the attention they need.

Our baby leaning on you as today she isn’t strong enough to sit independently, our son sitting by your feet so he is just touching you so that you know he is there and he knows your with him.

I watch as our other two are in their spots, so you can play with our eldest daughters hair and can chat away to our youngest son quietly as to not disturb the others.

I watch as you know where all the children are even when you’re in the bath.

You know what each one needs without even seeing their faces.

I see you as you just get to sit down after getting in from a shift at work and instantly having to get up again as one of the children needs you.

I watch as you as you effortless pick up toys and clothes while telling the children what to do next on their homework pieces.

I see you calmly replacing the children’s dinners as their favourite meal from last week is now one they can’t even tolerate looking at.

I see you as you hold our baby during painful examinations and tests.

I see you holding back tears as our baby screams as she doesn’t know what is going on.

I see you researching ways you can make our babies life easier, new therapists that could help, new research programmes we could go on.

I see you as you run when our daughter falls down in yet another paralysis episode.

I see you rush to our daughters side as her face turns blue and she can’t breathe as she has laughed a little too much.

I see you tired as our son has had too much on his mind and couldn’t shut down last night and so kept you up all night talking about rectangles (one of his obsessions).

I see you as you struggle to hold back tears or when you are jumping around the room in pure joy and excitement.

I see you!

You put your life and soul into this family. You know all the children’s needs and will make sure all of them are met.

You are an inspiration and I wish you knew how much you mean to me and our children.

Thank-You Mum

Without my mum, I would be lost.

There are very few people who, “get”, Brody completely.

Understand his non-verbal cues.

Understand his very real lack of danger awareness (and that we’re not just over anxious helicopter parents).

Understand his wobbly legs.

Understand his sensory issues.

Understand his routine and that if you put his shoes on, you better be ready to leave the house in T minus ten seconds…

There are also very few people who really understand what our life is like or know when I’m struggling.

Obviously there are a million amazing things that come with being Brody’s parents and we wouldn’t be without him.

But life isn’t always straight forward when you have a child with disabilities – and a lot of people really don’t get that.

My mum does.

Mum is the reason I’ve been able to keep swimming on the many occasions I thought I might sink a little (or a lot) over the past six years.

Mum is the reason hospital appointments aren’t completely stressful.

Helping me through the waiting room chaos.

Watching the kids so that I can talk to the doctor.

Absorbing information so that it’s not just my brain trying to process what is being said.

And then letting me offload, rant or cry about it all afterwards.

Mum is the reason I don’t go insane in the school holidays.

Mum is the reason I don’t permanently have grey roots and can visit a hairdresser.

Mum is the reason I can go out and nag meet with various places about installing Changing Places toilets every month.

Mum is the reason we can have a night away once or twice a year and some welcomed rest without worrying or feeling guilty about the kids.

Mum is the reason I’ve got this.

And I don’t think I’ll ever quite have the words to thank her enough.

I’m Ashamed That We Live In a UK that Allows This To Happen

There are so many issues that many, many people in the disabled community face due to a lack of thought and care.

I was ignorant to the world that I now live in and naively assumed that the Equality Act (2010) and decent morals would cover most of the issues that our community faces.

Sadly, this isn’t the case.

This Disabled Access Day I’m aware that there are so many issues that affect the disabled community in the UK.

I’m aware that the issues my family face are just a fraction of those faced by others.

I’m aware that ignorance is bliss and the right to access is a fight we should all be fighting.

Because if you don’t shout about access issues because it’s the right thing to do, you should bear in mind that disability can affect anyone of us at any time.

Maybe an issue doesn’t affect you now, but tomorrow it might.

And trust me – it’s an uphill, unjust battle.

The biggest access issue that affects my family is a lack of Changing Places toilets.

I am like a broken record talking about the issue because I find it so hard to believe that we live in a UK that allows this to happen in 2018.

My six year old son Brody is doubly incontinent and wears nappies.

Before he outgrew baby changing facilities I never gave much thought to how older children and adults who wear padded products got changed when out and about.

I’m ashamed to say it simply didn’t cross my mind.

I also didn’t think of how people who couldn’t self-transfer on to a toilet would be able to sit down on one.

I naively assumed so called “accessible toilets” would be accessible for everybody who had a disability that meant that they were unable to use a standard toilet.

How wrong was I?

More Changing Places toilets – a 12 square meter room with equipment such as a height adjustable changing bed, toilet and tracking hoist – are desperately needed throughout the UK.

Sadly, there are only 1080, as I write, which really isn’t a lot – especially when you consider the fact that there are 2500 toilets in Wembley stadium alone!

There are only 157 in Scotland where we live and currently none in our local authority whatsoever.

This means that unless we stay at home and never go out, the choices we are left with are undignified, unhygienic and unsafe – change Brody in our car boot, change him on a public toilet floor or leave him sitting in a dirty nappy.

How can the government justify that these options are acceptable?

How is it that the UK treats some of its most vulnerable citizens this way?

How can we say that it is okay that so many disabled people, their families and carers feel excluded, unwelcome and thought so little of because they are denied a basic human right when venturing out of their house – going to the toilet.

This is a huge issue affecting thousands of disabled people, their carers and their families.

This Disabled Access Day, I’m ashamed that we live in UK that allows this to happen.

Disabled Access Day?

Many organisations and venues are hosting ‘Disabled Access Day’ on Saturday 10th March, following on from the organised events in 2015-2017.

If you’ve not come across Disabled Access Day before, here’s what the organisers say about it: “In 2015 Disabled Access Day began as a day to celebrate good access and created opportunities for people to try something new.

The day was about highlighting the fantastic access that already exists in places, such as touch tours, relaxed performances, sensory experiences, level access and of course a warm welcome!”

There isn’t an ‘official’ Disabled Access Day in 2018, with it returning in 2019, and that perhaps highlights the issue here… why does this have to be a ‘once a year’, or even less, event?

Surely, we should be making every day ‘disabled access day’?

Making this an annual event risks giving organisations, venues and other providers an excuse for treating this as a once-a-year experience for them too…

“We’ve taken part in disabled access day, put some effort in on that one day, we can tick the box and get back to normal”.

While many are great at this throughout the year, there are many who aren’t, providing the most basic of support for people with disabilities, if even that.

This can range from the everyday problems of everyone unchallenged helping themselves to disabled parking spaces at the supermarket because “I’ll only be a minute”, or “I don’t want to park in a normal space in case my car gets damaged”, through to disabled people having to lie on the floor in public toilets to change because there are so few properly equipped disabled changing places.

Then, even further through to the language used by organisations who still deem it acceptable to talk about people being “crippled by debt”, or “blinded by science”.

Another issue with the way some organisations engage with Disabled Access Day is that it can tend to focus on just some areas of disability, often being about physical access, whereas the diversity of disability requires a much broader response.

What about people with ‘hidden’ disabilities such as ADHD, or Dyslexia?

What about people with neurodiversity such as Autistic people?

Is everyone considered, can everyone be considered, when an organisation is focusing on how to showcase access on just one day?

While day events like ‘Disabled Access Day’, or even longer campaigns like the excellent ‘#LooAdvent’ campaign before Christmas, can have a positive impact, we need to see a joined-up approach to enable disability equality to be seen as just as valid and important a cause as gender equality, racial equality, LGBTQ+ equality and other more high-profile campaigns that seem to get more publicity.

Where is the #MeToo or #TimesUp campaign for disability equality?

Disability equality seems to be the poorer cousin of its more high-profile family members, with few celebrities mentioning it during Oscar acceptance speeches…

This lower and often uncoordinated profile for disability equality can create real world difficulties for people with disabilities, their families and carers, etc.

If there isn’t a loud campaigning voice for them, it allows Government policy to pass them over, or worse to target them for benefit cuts and radical changes to disability, benefit, and employment legislation.

Imagine if the Government proposed to actively penalise women, or ethnic minorities, or the LGBTQ+ community… if members of these demographic groups were committing suicide because of the pressures being put on them by changes in Government policy (as has happened in the disabled community).

The outrage that would spew forth, the marches on Parliament, the ‘A’ list celebrities that would be queueing up to make statements of support…

So, let’s cheer on those who are independently putting something on for the unofficial ‘disabled access day’ this Saturday, and those who run longer time-limited campaigns.

However, let’s also look at how we can join together to help create a culture where this isn’t necessary any more…

A culture where anyone, of any ability, can access whatever anyone else can all the time; a culture where just as racist, homophobic or sexually discriminatory language is unacceptable, where we no longer make comments that use a disability in order to create a point.

A culture where everyone is accepted for who they are, for what they bring and contribute, and all are treated equally at every level.

It’s not time for ‘Disabled Access Day’, it’s time for ‘Disabled Access Everyday’ #DisabledAccessEveryday #DAE