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.

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”

It Doesn’t Have to be a Nightmare

So I thought that first fall was my worst nightmare come true. I never counted on feeling worse than that, even though I know it was unavoidable that it would happen again.

On Thursday night, Kev went for a run whilst I agreed to bath Squidge alone. I wrapped her in her towel and lifted her into my arms, doing well so far. I tried to pick my steps back into the lounge carefully, she is precious cargo after all. But I kicked one of her boots that I’d stupidly left on the floor and we keeled over together. I wanted to throw her away from me, but the only direction she could land in the split second that we fell together was towards our glass coffee table and I just couldn’t make myself let her go. So in that instant decision, I had no choice but to land on her. I moved off as quickly as I could, but understandably she cried.

The guilt coursed through me and I cried too, checking her over again and again, even when she’d stopped crying as soon as I’d adminstered ‘magic kisses’ to where she said her arm hurt. But oh, I felt like a monster, a careless monster. After all, I should have known to pack her shoes away before undertaking bath time by myself. I called Kev in an instinctive panic and he came home as quickly as he could. The rest of the evening passed just as normal, though I’ll admit I did have a glass of wine for medicinal purposes!

The next day, playing on the floor with Squidge, she playfully pushed me back on the rug, wanting to climb and lie on me and play. That’s usually a good way for us to play together, because there’s nowhere else to go if you’re already on the floor, it’s pretty safe. But this time, I fell back on her big toy drum with quite some force and I cried out in pain when it dug into the tense muscles of my shoulder.

Squidge stopped dead, frowning in concern and confusion as Kev moved to help me get up.

“Mummy ow.” I explained when I was sat down safely.

“Mummy ow the drum.” she replied.

About half an hour later, she threw herself down on the floor, striking her back on the drum in the same fashion I did, looking over at me as she shouted: “Immy ow!”

In that second, I was heartbroken, realising she was imitating my fall, repeating my pain as if it was a normal aspect of the life we live together. In the next second, I was impressed that she had understood the whole incident. After all, imitative play is how children develop an understanding of their world and whether I’m comfortable with it or not, falls and pain are a regular and undeniable part of our life.

I got down on the floor and said gently: “Oh darlin’, Immy doesn’t have to ow. Mummy ow cos Mummy fell over.”

“Immy and Mummy fell over.”

Then I realised she was connecting the two incidents, as if it was she thought she had to fall because I did, because we’d fallen together the previous night. Again, heartbreaking. After all, I am her mum. I am alive to be her greatest protector and yet from my arms, she had felt pain, however fleetingly. I felt so guilty, although given how much I worried about this exact incident when she was a tiny wriggly newborn, I suppose there was a need to be proud that it had taken me over 2 years to get to the dreaded moment.

But still, it showed how clued in she is. That made me very proud too. She shows such a great level of understanding and empathy.

“We did fall over darlin’, but only because Mummy has tired legs. Immy has clever legs, you don’t need to fall.”

I showed her where on my body I had hurt myself on the drum, let her feel the tight tenderness in my shoulder.

“I don’t want you to ow like Mummy, when you have clever legs!”

“Clever legs!”

“And what does Mummy have?”

“Tired legs.”

I think this is the start of explaining Mummy’s differences. In the simplest terms I can. And so far, my beautiful Squidge’s head and heart are keeping up. I really hope this won’t be so bad after all.

“Mummy, I’m alright!”

This is Freddie. Freddie is the most loved Fox there ever was.

Freddie came into Squidge’s life when she was just a few weeks old, my own best friend introducing my baby girl to her own best friend. I love that. I love that Squidge loves someone else so much.

He comes with her everywhere at the moment. He came with us to the playground opposite our house. She pushed him lovingly back and forth on the swing until, inevitably “Freddie glide!” (Slide, of course!)

Squidge has always been so confident physically, very rarely is she willing to accept help. And I love that confidence, I want her to have it always.

But because she was so determined that beloved Freddie should enjoy the experience too and she would not let him go, she lost her previously confident footing on the suspended stepping stones.

I know every parent experiences the horror of slow motion. I saw her fall before she did and cursed my body for not reacting in time as she sobbed in shock.

I bundled her into my arms and checked her over, horror and tears coarsing through me. I had never seen her actually hurt herself before. I called Kev instinctively as I soothed her, convinced we’d be going to A&E.

As it rang, I asked Squidge where she hurt. She’d fallen forwards about three feet and I was terrified she’d say “head” or worse, nothing at all because I’d allowed her to be so damaged she couldn’t remember.

“Chiiiiin!” She wailed. I personally have split my own chin open twice so was terrified to look where she pointed. But there wasn’t so much as a graze. The sobbing subsided (from Squidge at least!) and Kev, thank God, was calm.

“I can’t even hear her crying.”

“She is!” I insisted as she wriggled out of my arms.

“What’s she doing right now?”

As I remained a tearful, guilty wreck on the floor, I dared to look up. And not only had our beautiful, brave, confident girl climbed back up onto the slide; when she saw me looking, she called out reassuringly “Mummy, I’m alright.”

And so Squidge and Freddie played on until she could be tempted away with an offer of tea and an episode of “Money” (aka Tipping Point) and I was amazed and humbled by the utter resilience in someone so small.

The guilt made my stomach wrench as my baby cried but that baby, she consoled me. Never have I been so reassured of the good job I am doing as a parent.

Mummy sees you’re alright Squidge. I think you’ve got this, baby one.

My Worst Nightmare

Yesterday, I lived my worst nightmare.

I fell over in the road holding onto my little girl’s hand.

I always have this moment where I know I’m about to fall, so try and prepare my body for the impact. I remember clinging to Squidge’s little hand and praying to God she didn’t fall too. I hit the road with a thump – it still really hurts to sit down – and heard this panicked shriek of “Mummy!”

I immediately folded my body around my little girl, guiding her to the kerb. She’d fallen with me too. I’d struggled too much to keep up with her eager little step and pulled her down. But even in that confusion, she didn’t cry. We’d be walking round the corner to playgroup and were literally one kerb away from the door.

Another of the mums saw me fall and came running over to make sure we were OK. I’d barely even registered that it was me that had fallen, or how much pain I was in. I just folded myself round Squidge, told her we were OK. Because that was what she needed to know. She wasn’t crying from her own pain. The very first thing she did was look back for me – she didn’t even let go of my hand on impact.

My little girl is a star. This was out first fall. I felt so guilty, have always dreaded the first day that this would happen and wondered how she would cope with the realisation that Mummy cannot always keep her safe. But I’m proud to say my instinct was to do just that – and that it seems Squidge’s was the exact same.

Being gentle with Mummy

In the last 48 hours, I’ve fallen over twice. I don’t fall much, but when I do, I do it spectacularly and more often than not, give myself some degree of whiplash which makes it hard to use one of my arms because of the pain in my shoulder.

Yesterday, stood in the hallway coming in from my driving lesson, I kicked the box that contained our new blinds. I hadn’t moved them since taking them from the postman the day before. I went sprawling, sobbing even before I hit the floor I think. Pain coursed through me, shock making the tears come thick and fast.

What’s funny (not haha funny!) is that I always have a half-second where I’m very aware that I’m falling and try my best to protect myself on impact. In the next half second, I’m always so angry, like I can be surprised that my body has let me down again. So angry, pummeling the floor as I sob in pain and fear (of the pain, what a hideous cycle this is!)

Normally, I get up onto all fours and just get up. But my knee is throbbing (it’s now four different colours of gross) and I can’t. So Kev has to help me as gently as he can. I don’t move much for the rest of the day, it’s OK. Sit in a coffee shop writing notes for my next essay. A few twinges in my shoulder (I didn’t drive because I couldn’t turn my head all the way to do blindspot checks) but hey the pain is a lot less than I’d reckoned on.

Today though…

I have piles of clothes on the floor and we have many rounds of Squidge’s clothes in soak because she’s had some loose nappies recently and we never know if her sheets are going to be baby-poo free each morning (three mornings now, not so much… ah the joys of parenting) so I decide I must get some washing on.

I try and lift the tub with the clothes in soak down to the floor so I can put them in the washing machine. But my shoulder doesn’t quite make it and so I drop the tub, sending a river across our tiled floor and I know I’m going down too. I really struggle to get up even with Kev’s help because it’s so damn slippery I can’t plant my feet. Being me, I don’t have many options with how I’m able to do things like that.

I sob for an age. Kev has to go and get me dry clothes and I can’t even bend down to put them on because my shoulder hurts and my balance is rubbish. Cry harder about how I just want “to be able to do something… have clean clothes and lift my baby… not be a useless lump.”

Kev helps me dress. I feel so incapable but he tells me I mustn’t waste my energy, or be surprised it was hard to lift something heavy when my shoulder’s already hurt. I know he’s right. He is. But it still takes a long time to stop crying.

Kev goes and gets Squidgelet from her nap. She clambers over me on the sofa because Kev has his phone in his hand and of course, she wants to play. She normally struggles to pull her legs up behind her on to the sofa.

“Kev…” I start. “I can’t… I can’t lift her.”

But before either of us have to make moves to try and help her… she’s done it. She’s put her hand on my bruised knee and I wince.

Kev says: “Watch Mummy’s knee.”

Squidge is learning that if she has anything to say sorry for, she must stroke the person softly to apologise. We (all) call it “Awwww!”

My beautiful girl looks at me as I tell her “I know it looks strange at the minute baby, that’s because it hurts” and then she gently strokes around the shape of the big ugly bruise on my knee with her finger, saying “Awwww!”

I love her so much. She is such a kind little soul.

She brings me her shoes when I ask for “Immy’s shoes?” and even puts her arms up against my neck so I don’t need to put my back (or more importantly, neck) into lifting her on to my lap to put them on.

Kev’s taking her to Nanny & Granddad’s so I can finish my essay notes in peace. But Squidge takes my hand and leads me to the door to the hallway. She looks back at my feet, carefully watching what they do, as if she’s checking I won’t fall. She gives me a kiss goodbye when I ask and then carefully walks herself down the front step with Daddy, shouting “Bye-bye!” back to me with a wave. I love that in my rubbishy days, when all I want is a different body, this little girl reminds me why it is OK to keep being me.

Her nan said to me the other day, having watched Squidge bring me her shoes on request: “She’s learning you’re a little different isn’t she?”

“Yes,” I said with a smile. “She’s so helpful.”

And so thoughtful too. She is beginning to know when I need her to be gentle. And that might be a lot to expect of a 15 month old, but she’s taking it in both our strides. She knows what it is she needs to know with me as her mum