It’s A Small World After All

The world is a strange place right now. In the grip of a global pandemic that has the potential to threaten all of our lives.

The best advice is to self isolate, protect yourself, protect those you love and by virtue of sensible action, protect vulnerable strangers. To say a grateful prayer for the nurses, doctors and key workers the world over working with all of their heart and soul to keep us well, keep us safe and help us find a way out to the other side.

To not be one of the idiots clearing supermarket shelves, or taking your entire family out for a day trip in the aisles.

We keep hearing the phrase unprecendented times and though it might be starting to grate, it couldn’t be more true. The world has never faced something of this scale. We’ve survived World Wars, people have lived through nuclear war and terrorist attacks. And yet, we don’t seem to be grasping the sheer importance of staying home. Even in a week when Disney+ was launched, we seem determined to get out and endanger life, simply because we’re being told not to. We cannot be surprised a lockdown has been forced upon us and honestly, the stupidity and selfishness of people at large is starting to scare me more than the virus itself.

My family & I are personally 2 weeks into a suggested 12 week shielding isolation, because both my pregnancy and cerebral palsy apparently place me at a higher risk, so the three of us have bunkered down, basically for the sake of our two children. I don’t think the grade of my cerebral palsy puts me at increased risk because I am fortunate not to have any of the common secondary conditions, like respiratory issues, but we absolutely would rather be safe than sorry.

So there’s no more nursery for Squidge, no playgroups, no gym, no trips to the park. Kev & I are working from home and Netflix & Paw Patrol are babysitting a lot. I feel a lot of guilt, but it’s almost comforting to know we’re not the only ones facing this. I do feel sorry for Squidge most of all, the lack of routine is not fair to her. I will be glad to get that back.

But, I am learning a lot.

There’s not been enough work to work my full days so the childcare has in the most part fallen to me. Kev comes down to play with Squidge and share meals as often as he can. It is so nice to be able to have breakfast together every day and it is certainly something I will want to maintain for our weekends.

It has been so lovely to sit with Squidge and play games, to draw rainbows for the windows, to count all the Stay Safe rainbows out in the community on our daily walks.

I am home a lot anyway given that I worked from home before all this to maintain my health and my world already existed within a small radius of our town, so that I could feel confident and independent. It may not be everyone’s choice when the world is at a normal capacity, but it works for me. Now that the world has been forced to slow down for the greater good, I guess they’re seeing more what my world is like. I mean, I can’t say that everyone appears to be enjoying it, but it’s more of a reality now.

Suddenly, I don’t need to feel so guilty for living in my small world. The whole world is suddenly small. My own personal universe is required to exist within the walls of my home, extending on sunny days out to our backyard, all for the good of ourselves and others.

It’s kinda nice not being able to be frivolous. I mean, I try to be savvy anyway, but there’s nowhere to go right now! I’m not going to lie, I did get a wholesale box of chocolate delivered, so please think of me when I go in for gestastional diabetes test in a few months! It’s nice to have more money in my pocket, so I’m overpaying our mortgage a little more. Like most people, we’re probably being forced to spend more money on our groceries, but that’s pretty much all, but suddenly you learn all the things you already have, the things you can make do without. It no longer makes a difference if I get my hair done every 3 months. In fact, I’m letting it grow out during the isolation so that there’s less work to do when the world goes back to normal. I’m about to be a mum to 2 children, possibly whilst still under all the necessary restrictions of this panemic. My roots are going to be the last damn thing I care about.

Part of me hope that a lot of people out there are reassessing what’s important. This isn’t a lecture, I’m a consumer like the rest of us, but in a time when it’s getting harder by the day to name the positives, it’s nice to know the environment is being given some kind of breather whilst we’re forced to be at home. My home is important, because it is my own and I am lucky to have it. So, whilst it’s possible, the mortgage is important. My nice fluffy blankets are important. My Headspace subscription is important. Clearing the house out ready for the baby is important.

Very few things outside of my little world (besides extended family and the restoration of Squidge’s routine) will continue to be important when some level of sanity and calm is restored in the world. That in itself feels very freeing.

I am almost 20 weeks pregnant now. In some ways, that’s a relief, in other ways it makes me sad. When I dreamt of having a second, I wanted to prioritise myself, my health and enjoy a calm pregnancy. In fact, two of the most pivotal people in my family have had extended hospital stays and now the whole world is at risk from a virus I have to hide from for the sake of them all.

Next week, I will be forced to attend my scan alone, because partners are not permitted to minimise the risk of coronavirus spread and even then, Kev would not be able to attend because we have no support network since Kev’s parents went into isolation for their own health at the same time as us, hence there will be no-one to care for Squidge. There is nothing to be done, but we are both gutted. We wanted to discover our baby’s gender together. Now, however, if it can be determined, I will find out before the father and sister of the baby, the two most important people they will ever know. I have arranged gender reveal surprises for them, but out of necessity rather than anything, because I really dislike the conceit surrounding the tradition of reveals. But I don’t expect anyone to care about the news other than Baby’s family.

My hips are starting to ache a little more and I feel a bit more vulnerable when moving, but I keep remembering the struggle of carrying Squidge and I am thankful most days that my physical self has withstood this pregnancy, especially with all the emotional challenges we have faced instead. I fully intend to single-handedly keep both my physiotherapist and massage therapist in business when my isolation is able to end, because I miss them terribly, as do all my muscles!

I sincerely hope that everyone in a similar position to me is prioritising themselves, taking care of themselves and remembering to breathe. I forget this often and as stress build, my God can I feel it translate in my body. This is an entirely new scenario for us all to live amongst, but remember that that’s true for us all. That means you’re not alone. Keep busy, but take things slow. Much like I wanted my stay-at-home mum lufe to be, there is no sense of time anymore, there is literally no rush. Right now, all we have is time. Use it to look after yourself and make yourself your priority. If we’re not looking after ourselves, we’ll not be able to do our best for others, those who probably need us more than ever whilst the world is on its head.

So let’s go for the little things, the simple pleasures and let the rest fall away. The world will speed up again, it will get big again. Let’s take some comfort in the peace of this small world. It cannot last forever.

Stay safe.

Happy 2020 – 10 years in review

Another year has rung in. Everyone on social media is doing the #10yearchallenge to contrast (and hopefully celebrate) the decade gone by.

But it’s more poignant for me. At the end of the month, (January 30th to be exact) it will be 10 full years since, a bit worse for wear, I met a man outside my favourite nightclub. We didn’t know it then, but I would become this man’s wife and I would become the mother of his children.

In the last 10 years, I have hit so many milestones, so many I never expected to, because I just didn’t believe I could.

But that’s OK, because Kev did.
In the last 10 years, I have

❤ fallen in love

With a wonderful man that loves me too, when I never thought it could be possible

🏠 moved out of my family home

🌆 moved cities (twice)

I hate moving. I’m very glad to call South Wales my adopted home now.

💍 got engaged

👰 got married
It will be our 5th wedding anniversary this September. I have absolutely no idea where that time went, but am so pleased to report we are still very much where we belong. Together.

👩‍💻 started my OU degree

This is one of the things I am proudest of. I started my six year course 4 weeks into married life, because I’d finally run out of excuses as to why I couldn’t, and so I knew I had to try. This is the one thing that is simply for me, and I am on course to graduate next year. I don’t know how the time has gone so fast, but I love it so much.

✈ gone to Disneyworld

Here I learned that if you’re sat in a wheelchair (because walking hurts when you’re 3 months pregnant and have CP to contend with) most of the employees assume you’re deaf and mute and just talk over you! It made me feel so sad.

🚄 gone to Paris & the Moulin Rouge!
I have wanted to go to Paris since I was young, after falling in love with the film Moulin Rouge. I finally made it there with my best friend in the world when I was 5 months pregnant and snuck Squidge some prosecco during the show. Not gonna lie, she loved it – and so did I! A total bucket list weekend and I’m so glad I had a friend that was determined I would live it – even if it meant her pushing me in a wheelchair up the hideous inclines of Parisian hills.

👶 met Squidge and finally understood what I am for 😍
What can I say? After the trauma of our birth story, this little girl is my greatest gift.

🏠 bought our forever home
Not going to lie, in places it is a shambles. But like I said, we’re never moving again without a lottery win, so we’re determined to spend our lives making it our own little peace of heaven. I love having somewhere to feel safe that is all mine. I never thought it would happen and credit one incredibly hard working husband that I am incredibly proud of.

🚗 got my driving licence after 7 years
Hardest won fight of my life I think. I can’t say I enjoy driving and I am not confident and even a year later only go where I have to. But that doesn’t have to matter does it? The point is, I’ve given myself choices, because someone believed in me enough that I indeed proved I can.

🏝 gone to Cuba and swam with dolphins
I’d recommend Cuba as a holiday destination to anyone. I have the beaches at sunset as my background on my work laptop for when I need a bit of peace. I was so scared to leave Squidge for the first time, but I swear, that island was paradise, and in contrast to Disney, I couldn’t believe how attentive the locals were to my CP. They didn’t know what it was. They didn’t ask. They just looked me in the face and asked if I wanted their hand. It was wonderful to be treated like a person, to feel the beautiful sun on my skin. If you ever get the opportunity to go, go! You won’t regret it.

👨‍👩‍👧 took Squidge on her first family holiday

A week in Devon contrasted against Cuba somewhat. But it was Squidge’s first holiday and it was honestly heaven. We were just a family. Time was a concept that went out the window and I felt so peaceful. Squidge took the lead on our activities and we showered her with attention and it was bliss. It taught me that my family is the centre of everything for me, and put me at peace with the idea that work will have to end soon, because my body demands it. I have so many much more enjoyable days at home to look forward to.

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I know it probably feels like I am bragging horrendously. Maybe I am. I apologise, that’s not the intention.

2019 has been a year of self care for me. Investing in CBT courses and private therapy because I did not feel at peace with myself, despite the enormous blessing of my family. It has been hard not to slip back into the lingering darkness that is depression. It has been hard to fight against the voice in my head, which I believe implictly to be myself, which seems so angry at me.

But it has been the most important battle. Highlights like the ones listed above show me how much I have achieved, when there was a time in my youth I honestly believed I wasn’t capable of achieving anything. It is so important for me to recognise the things I have done well, to recognise the invaluable support I have had from my family, whom I love so much.

More than anything though, as I took a deep breath on New Year’s Eve, I realised that I am worthy of each of these blessings. Some are made of good fortune and luck, but others I have seriously had to work at. I deserve happiness. I do. Because what is life without it?

Wasted. And in this body, with the challenges I have to face year in and year out, I really don’t have that much left to waste. And life itself will never stop challenging any of us will it? So why fight it? Why spend so much time feeling drained for battling against the things I cannot control? My energy is too precious, time is too damn precious.

2020 I shall strive to make the most of them both.

I sincerely hope you do too.

Happy New Year.

Priorities vol. 2

Whenever I have been faced with needing to make changes, to practice acceptance of my changing capabilities, my wonderful, loyal, supportive husband has only ever asked one thing of me. “I’ll support you in whatever” he says. “You are living your life, you know best. But please, don’t make any decisions based on your emotions.”

Yesterday, after a very long day at work (all-day conference in the city), I fell over in the dark street having just got off my bus. I got up slowly from the ground and felt a familiar pain coarsing through my arm. I’m still not over my most recent bout of whiplash, so it feels like the aches, the pain and the limtations have been lingering for weeks. I called Kev, and asked him to come get me, as I was just at the end of the street. He raced down and as I saw him coming, I burst into tears. Because I knew I could now, that someone was here to understand.

We walked to the next corner and I lost my balance coming off the deep kerb. I screamed. Not because of pain. Kev caught me, I was fine. I screamed like a wounded animal. Because I feel more and more that I cannot be safe, that I am not allowed, I am not able to carry on with the threads of life I am trying (too) hard to hold onto. I fell over yesterday exactly at a point where I was allowing myself the thought “I am doing well. All these treatments are allowing me to keep up.”

I screamed because it felt like my body had heard the thought and just decided “Let’s remind her how wrong she is.”

Kev was worried that neighbours would come into the streets, wondering about the woman screaming in such pain. He tried to shush me. I stood in the road, clinging to him for my balance and sobbing. Sobbing about how unfair it is, how useless my body feels and how much I don’t want to live like this anymore.

I know the way I have to live cannot change. I grieve for that fact every day and I do not apologise for it. But sometimes, I am just too tired. Tiredness is the precise reason I was able to fall in the first place. I’m not sure it used to be and it makes me so sad.

The sound was awful. I knew it was me and yet to hear it, to have it be so desperate to escape from my chest and throat, it was like I was listening to somebody else. All I could see through the tears was the blur of the street lamps, and all I could hear was this awful sound. That poor woman, I thought, she sounds in so much pain.

Because it always changes. Part of my experience with disability and depression has always been, rightly or wrongly, that if I am depressed, I cannot be caught off guard when the depressing times or events come. It cannot impact me, they were expected. I don’t mind admitting it’s a horrible way to live. But that’s always been my rationale.

This weekend, I had what I call a peaceful moment. A realisation of true peace, calm and contentment. They are very rare to me. In fact, I cannot remember any outside of the 4 years Kev and I have been married. I’m sure this is not a true representation, but it does show what an amazing impact my husband has had on me as a person.

The first one was the day after our wedding. We’d booked a nice spa hotel for a mini-moon, to let us adjust to married life. Spas are ridiculously important to my physical maintainence and I remember just climbing into the warm jacuzzi. The sun was setting, sending beautiful red streaks across the sky as we looked out onto the Welsh hills. We held hands, our new wedding rings shining on our clasped fingers. There was nothing to do, no-one else to worry about. All we had to do was be.

The second was a weekend away around the first anniversary of my dad’s death, when work had been hectic and my grief heavy. It was to the city of St. David’s, which is in fact this beautiful little village. It was pouring down with rain pretty much the entire time. So all we did was walk between the hotel, the little chocolate shop and the pub with a roaring fire. It was as if the world couldn’t touch me there.

The third was the perfect day we had in Cuba, swimming with dolphins and eating lobster, drinking rum on a catarman as the sun set. An experience in a beautiful part of the world I could never have imagined I would get to see were it not for the husband so determined I deserved to see it.

The fourth was our first family holiday, where nothing mattered other than our little girl’s happiness.

The fifth was just this weekend. We went for a nice autumnal walk in one of our local parks, me wanting to crunch leaves underfoot, Squidge wanting to play in the park. There was no rushing, no clock watching. We went for hot chocolate at the café and I looked at them both, my husband and daughter, and I was so peaceful, so content. Right in those moments, I had everything I need in the world.

And I think that’s why it hurt me to hear myself so distressed over a fall. Because I know it was because I was tired, a reult of wanting to work too hard. It is not my fault. It is not what matters most. Yet still, I get so absorbed in what people must think of me, all these shortcomings that make me so pitiful and abnormal. Except, I am slowly realising, those are not the opinions of others. It is me, projecting my own. And I don’t want to waste my precious energy on being so angry with myself. What use can it possibly be when I had that moment in the park, that wonderful moment of knowing I have everything I need?

My family is everything. They are what ground me and who make me feel whole. I refuse to care any longer about whether I am working hard enough, or how much longer I can work to put coffers in the pot. A job is not what I want. My family is. I would like nothing more than another baby and I am determined not to wear myself down working. I know too that Kev would adore another child. So much so, that he refuses to wrangle with himself as I do over the finances. “If it’s something we want” he says (he knows it is) “then we will manage.” I have spent a lot of time and energy arguing with him, but what for? To see if I can make him as worried as I have been? It’s useless. The two of us are too determined in our aim. And what a beautiful aim it is.

The idea of managing has always stuck in my throat, like it cannot be enough. But I don’t care anymore. Somewhere safe and warm to sleep, with food in our bellies and love for each other. That’s all we need and we have all of that. I don’t want to struggle anymore. I want walks in the park, at my own pace, not having to think about what the rest of the world needs from me. Because what I have to give is not for the rest of the world, it is for my family. It is for that poor broken woman whose screaming is still ringing in my ears.

Priorities

Earlier this month, we took Squidgelet away for a week, our first family holiday, to a caravan park in Newquay. It was one of the best weeks of my life. We were determined not to be constrained by time or routine. We were going to do whatever we wanted, whenever we wanted. It was bliss. Squidge loved having her own room in the caravan. The light switch was right next to her bed and she was determined that it would always be day time, so she could go and play. We told her to knock on our door each morning and we’d talk about what she wanted to do that day.

The first morning, she knocked on the door: “Mummy! Daddy! I want tea!” As we looked up from under the duvet, she was holding her swim nappies in her hands, having swiped them from her suitcase. “We go swimming.”

We all laughed, it was so nice letting Squidge take the lead, having all the fun she wanted to. She has become very matter of fact and straight talking, which I just love.

We spent our days at the beach or park, riding trains, going to the on-site soft play or pool, always going to bed via the penny falls. Squidge even dunked the 1000 point skeeball where Kev and I failed.

She’d go to sleep and we’d sit on the outside steps listening to the sounds of people glad to be on holiday, talking about how happy we’d made our precious girl that day.

Coming back was hard because I had my PIP Assessment to dread. I’m not going to elaborate yet because this stressful journey is not over for me or millions of others. Suffice to say, I despise that I am made to fight so hard just to live.

Emotionally it’s a terrible position to be put in. As ever though, Kev was my saviour. We went straight out, back to the hotel we had our wedding reception in 4 years ago.

This was how we celebrated our wedding anniversary whilst we were away:

But we’d always said we’d go back to the hotel each anniversary, to our favourite corner of the bar. Our spot.

He let me soothe myself with cocktails with daft names then I went off for a massage I so needed. Then off to the lovely Italian restaurant we ate in the night before our wedding. Two bottles of rose down and I’m laughing, my head hurts less from always being so busy.

I honestly thought I might cry after the assessment, through relief or pent up anger. I was truly surprised when I didn’t. Instead, I was taken aback when I suffered tension headaches and dizziness for the rest of the week. I honestly think it was all the stress begging to be released.

I didn’t enjoy returning to work either. I know no-one does after a holiday but oh, I just wanted to be with my girl, to lose the concept of time and stress, to enjoy.

So whilst financially it may not be time, I think I have shown myself I am done with working. In comparison to my family and feelings of peace, my ability to financially contribute means so little. I really don’t care to sustain it at the cost of my own health and happiness, when once I was sure I had to.

But my priority now is this wonderful family. It’s a relief to know that for once, all of me is in agreement. Life is for living after all.

I really needed that

This is the walker. Squidge loves it but there are versions of me that despise the fact I need to use it at all.

Today was not a day when that fight needed to matter. I had slept horribly on my shoulder and every movement hurt. Today I needed its help.

I dropped Squidge off at playgroup and was already in tears from the pain. I felt so lost and overwhelmed.

And then, walking through town, an elderly couple approached me, joking about not texting in charge of a vehicle.

The lady asked me outright what I needed it for, curious, not accusatory. It felt strange. But her kindness allowed me to a bit more honest.

“My balance is shot.”

This lovely stranger squeezed my hand and said “Good for you. You’re doing the right thing then.”

I really needed to hear that. For once, there was no judgement, no eyeing me up as a fraud because you can’t see my pain.

I went on to my massage. The therapist was so kind and understanding. She knew of cerebral palsy, was unsurprised when I mentioned my muscle tension, or the need to have a bit longer to get undressed. She even offered to help. And I didn’t allow myself to feel patronised. I felt supported.

She worked tirelessly on my muscles and tension. I felt the pain subside, the muscles loosen. By the time I collected Squidge from playgroup I felt human enough to agree to a play in the park.

After the emotional turmoil of constant pain and stress these last few weeks, it was nothing short of miraculous. I’m allowed to be important too. I think I really needed to be told that today.

My little cheerleader

It feels so strange to say it, but this last week or so, I have been on top of the world. Tired, but accomplished and oh so proud.

Knowing that I struggle and knowing that I don’t want to hide forever, I have taught Squidgelet to say 2 phrases on demand:

“Take your time Mummy’

&

“Come on Mummy, you can do it!”

I love so much that she’s so willing to support me in this way because, whilst I confess I am easily overwhelmed, she remains the reason I do everything and her words calm and focus me so much.

We are home alone today and I was determined not to waste it slobbed out in front of Youtube. Despite how much the thought scared me, we got in the car and I drove. Somewhere new. And when I pulled perfectly into the space, Squidge declared: “Mummy did it!” I was so proud.

Today, for the first time ever, I took Squidgelet swimming on my own. She’s two-and-a-half now, with such amazing communication and empathy for her mummy. I have always been too scared, terrified I might fall.

But she listened to my every instruction, always looking back as she held my hand to make sure our small and steady steps on the slippery surface were keeping pace.

She splashed, she jumped, she kicked her powerful little legs and swam all on her own. It was almost as though, with her buoyancy vest on, she didn’t need me. But better than that, she wanted me there.

I struggle to pull myself up onto the side of the pool, but my beautiful girl pulled me the rest of the way by pulling my shoulders with all her might, so determined was she to push me in again.

I’ve never had so much fun!

I dreaded getting dressed again but kept my voice calm and we talked through every step together. I even managed to coax a hesitant Squidge into the showers. I have learnt everything is a matter of making time for it. No need to get annoyed. No rush.

And here is our #successselfie

My awesome little sidekick and me, all dressed.

I had some shopping to get so decided on lunch in Morrison’s 2 minutes away. Parked perfectly there too.

Squidge, very well rehydrated after swimming had an accident as I sat her in the trolley. Potty training is going really well so we’re at the stage of pants rather than nappies and we’re just starting to have dry days.

Related to the cerebral palsy I believe, I had bladder incontinence issues well into my teens that was resolved by medication in the end. I have never forgotten the shame or lengths I would go to to conceal the problem so I wouldn’t have to miss anything fun. I fully believe Squidge has the same excitable logic and I absolutely refuse to let her feel one iota of the shame I did. We carry 10 changes of clothes and handle everything with a “No worries.”

We got her changed and enjoyed lunch together

Pretty much as soon as this orange juice was consumed in one slurp, there was another accident. She waddled back to the toilets, but I praised her highly, remembering too well how uncomfortable it is to walk with soaked legs.

Quick wardrobe change and Squidge was back in the trolley, diligently ensuring all our purchases were well placed.

I adore her and didn’t care a jot when she admitted to “Poo!” as we were at the checkout. It’s much better to see the hilarity in heading back to the toilets for the third time in 2 hours and wondering how I hadn’t been questioned for shoplifting.

The freedom that my determination to show Squidge that there’s “No worries!” is immeasurable. It, and she, are doing me the world of good right now.

Mummy did it, Squidge!

I am too important

I fell over in the supermarket last week. It was not my fault. This I know – displays should not obstruct aisles to the point of injury.

And yet, as I sat on the floor recovering, flanked by 2 lovely strangers who stayed to check I could get up safely, familiar feelings crept in.

Embarrassment. Vulnerability. Shame.

The dull ache of whiplash and resultant stiff muscles ruled my weekend. I cried all weekend, so overwhelmed by misery.

I hate to feel useless. But I feel it more and more. My confidence, ever fragile, is destroyed by every fall. I am going out less and less. I can feel the independence I wrangled for creeping away from me, each of us withdrawing into ourselves. We’re separate again now, you see.

That’s not OK. I grieve every day. I was never allowed to recognise that process when I was younger. I was supposed to be grateful that I had legs that worked and that wasn’t worse. I have been haunted by “it could have been worse”.

I don’t try and deny that grief anymore. I think that by accepting it and letting myself say with the finesse of a child that it is unfair, I am saying it cannot overwhelm me.

Sometimes it still does, this weekend being a prime example. So overrun with emotions – shame and hatred among them – I was desperate to lash out at the body that fails me and punishes me in doing so. Rationally I knew it would achieve nothing, but I was so overrun with hatred for the body I can never turn away from or escape.

It gets so very lonely, being on the fringe of so many parts of society. I can be disabled… but I can walk; I can be a mum… but I walk funny. I’ve never been able to fit anyone’s view. And it has broken me. All I have ever wanted to do is fit.

But I will not. Denying my reality is causing me so much pain. I already have so much pain. I do not apologise when I say I cannot live like this anymore.

I cannot live with I can’t. All that makes me feel is that I can’t be society’s perception of what I ought to be. But I am learning that other people cannot validate what they haven’t come to understand.

I don’t want to waste away here, resenting the safe haven of my home. That is not enough for me. But I do need to feel safe. And so I have finally decided to invest in a walking aid. The thought even as I write that makes me shudder with the embarrassment teenage me felt so acutely when I rejected the option.

But it cannot serve my pride in this way any longer. If I stop living, Squidge misses out too and even if I have to accept a decline so young, I will never accept its effects on my darling girl.

So I’m going to safeguard my independence however I can and teach Squidge that all expressions of emotion are OK, are healthy if they are being processed.

I fully expect that one day she may not want to be seen with her mum and a walker and that’s OK. I have to deal with the disability whatever, so there will be nothing I can’t deal with in her honesty.

But for now, I choose to let this decision empower me. After all, if it helps me carry on, then that’s all that matters. A wonderful friend said to me today “It is not for all the time. Often, it is just a visual reference to inform others you need more time.” Disability is not the either/or scenario I have always imagined. We can work with it. I hope. It feels positive to feel even that.

I am making a choice. I am important. I will shout for what I need. I will teach my girl to shout too. We will muddle through. As Squidge would say (to)”getha”