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.

We Are The Champions

Full disclosure: I fucking adore Queen. The ability to time travel would put me front and centre at their Live Aid show. If you cannot comprehend this adoration, then I am not your kind of person right now. And that’s OK.

Full disclosure 2: This post was written by a thankful wife in a happy rosé induced haze at the request of a deserving husband. I cannot be sorry about that.

This morning the dreaded brown DWP envelope arrived. It was due. In fact it was late so hardly a surprise, but oh how we dreaded the outcome.

# I’ve done my sentence, but committed no crime #

I tore at the envelope and under Kev’s watchful gaze, scanned for the words “cannot award”

Instead what I saw were the words “enhanced rate”.

Twice.

I have received the maximum award on both elements of the Personal Independence Payment for the maximum length of time.

*exhale*

It’s more than we could have hoped for. But even I know it’s not undeserved.

# We’ll keep on fighting til the end #

I didn’t fight. I didn’t have it in me. I couldn’t face the reality of my diminishing capabilities, especially for money. Even though we need it, it seemed so cheap and crass.

So Kev wrote the reality down for me, determined I should have a chance at what we needed to survive.

And they listened. I never could have expected that, the system is such a shambles. The relief is indescribable because right now, it isn’t real.

I no longer have to push myself to work. I can choose to devote myself to my family. I don’t have to feel guilty about forcing a financial burden onto my husband. I don’t have to push through chronic pain to make ends meet anymore.

For the first time in such a long time living with this condition, I have choices. That is everything.

And if you are suffering in yourself the way I have these last few months thanks to this travesty of a system, I beg you to hold on. If for no other reason than I know you bloody well deserve to.

The Dangers of “That’s life!”

Today is World Mental Health Day. When we have to recognise a potentially fragile and neglected part of ourselves or someone we love, or barely know at all, and promise to do better at nurturing and protecting ourselves because we agree that we deserve it.

This is the exact thing I swore to work on this year. To be honest and raw and to let myself feel my own strength and feel deserving of each happiness.

It can be so hard knowing who to trust with the everchanging state of our mental health, especially when we’re not to grips with it ourselves.

Even now, all these months later, I can barely get past the recognition of “I don’t feel well.”

They are just 4 words. And yet they are just 2 words out there that I have heard with alarming frequency recently. Two words that can keep me from ever being honest with you, when I might most need your help. They stop me trusting you.

“That’s life.”

Many things Are. Life.

Births. Marital squabbles. Your Amazon parcel being delivered 10 doors down. The car breaking down.

All normal things I accept are happening to all of us every day.

But please, I beg you, never brush off anybody’s concerns with a “That’s life.”

Because if I am feeling brave enough to share with you the worries and fear that keep me from sleeping, or feeling like a fully functioning human, then that fear, it is consuming me. I am losing a battle with darkness and I cannot feel the ground under my feet. I am lost and frightened. I am reaching out to you, for a hand to steady me.

It may be life. But in uttering a word of my concerns, I am acknowledging I cannot cope alone. “That’s life” dismisses the nerve I had to work up and worse, it leaves me alone still in that darkness.

Rain makes puddles in my kitchen. That’s life.

Except I’m now not safe in my own home. Which means now that nowhere feels safe and I live in constant fear of slipping or falling, because so long as it’s wet outside, it can’t be fixed.

CP has finally claimed my ability to work. I accept I am made too tired to carry on. That’s life.

Except without my salary, I don’t know if we’ll be able to fix the broken bathroom floor I worry about tripping on, or fixing our patched up electrics.

Worse, without my salary, I don’t know if we’ll be able to afford a much longed for second child.

That’s life right?

Except being a mother has given me the only peace this world, this body has allowed me. It is the only way I hav been able to make sense of myself or stand the pain I live with everyday.

If I cannot do it again, I will be heartbroken and though he’ll never say, so will the man I love more than anything.

It may be life, but it’s so unbearably hard. I would never presume to understand the life any one person lives. We will have experiences in common by virtue of human nature.

But it is so dangerous to presume that this life, anybody’s life is bearable everyday. It is not simply made so because “That’s life.”

Thank You For Being A Friend

You’re halfway across the world right now. You met a boy and moved halfway across the world to be happy together. The day you told me you were going, I smiled and hugged you goodbye, full of happiness for you for the adventures you would have that I’ve never been brave enough to dream of. But as we waved you off on the coach that day, I burst into tears and said to Kev “She’s my best friend and I’m never going to see her again.”

You haven’t come home yet, but you’ve also refused to fade from my life as I feared you would. Not through any fault of your own of course, your priority has to be the life you’re building now in the sunshine. I feared it would be down to me, never managing to keep up with time differences, struggling to think of constantly positive things to say, even when they existed, because I was struggling so much. I didn’t want to blacken your new life by being honest about the extent of my struggles, even though I knew you were one of few people on this earth I could share them with completely.

I struggle to do that with a lot of my able friends but you’ve never tried to advise me, like it could come from a place of knowing. Your face hasn’t ever contorted into nauseating sympathy. Instead, you’re the friend who I trust implicitly to say “That’s shit. Let me get you a drink.”

I so need that in my life. I need you. That true friend that normalises me because it’s never occurred to you to treat me any differently. Thank you.

Because of you, there are beautiful blooms here with me for Mother’s Day. From all the way across the world, you decided to celebrate my greatest achievement with me. Because you absolutely know that that is what Squidge is for me. You’re not obliged to value that in any way but you do because you know I give it my all.

These beautiful flowers will meet their inevitable end in my hands because I’m terrible at remembering to water them. But I know you know that about me. The fact you thought about me is enough to make me smile every time I walk past them. I like having a little bit of you back with me. The note that told me what an incredible mum you know me to be to my precious girl made me feel like you were stood next to me, chatting away. It made me happy.

So, even if I am inevitably rubbish at checking in, know that I love you. You are the best friend all this growing up gave me. You are, as I discovered yesterday the only woman besides his wife and mum that Kev has ever deemed worthy of buying dinner for. That is to say, we know how lucky we are to have you in our lives (and if he didn’t pay, he bloody well will when you’re back on these shores!)

I love you, darlin’ girl. Thank you for always being my friend from everywhere you are.

30 things I have learnt in 30 years of being me

Yesterday I turned 30 years old. I am officially a grown up. I have been always been afraid to age physically but this has harmed me emotionally too.

Last year, in a shopping mall cafe, I sat and wrote out a list of berations. I wrote myself out to be a hateful failure. For all my blessings, I was miserable, trapped in this body and more so, my head.

This year, entering a fresh new decade of living, I am proud to report that with the much needed help of the Mental Health Team I have very much separated that negative voice and now I recognise how and when it tries to sneak in and beat me back down. I have made a conscious choice not to let it win.

These are the 30 lessons I have been so lucky to learn in the last year:

  1. I am a dedicated mum

  2. I am determined

  3. I want the best for myself

  4. I am stubborn

  5. I cannot read minds

  6. The Little Monster cannot be defeated, only managed

  7. My body is not my own just yet but we can learn to muddle along together

  8. Every facet of my identity is my own. They do not need explaining to anyone but me.

  9. The truth can be a friend. I will not spare people’s feelings anymore

  10. I needn’t be embarrassed by my disability on account of people’s lack of understanding

  11. To ask for help is empowering and positive

  12. Decisions taken as a result of my limitations must always be in my best interest

  13. Self care is vital – and allowed

  14. It is OK not to be OK

15. It is vital to be able to say I’m not OK. I have a wonderful husband who wants to listen.

16. I do not need to hide this disability away because I am “lucky enough to walk”. It is mine to own.

17. Not everything is my responsibility. Disability is something society should be accepting of outright. I shall tell it as it is and it should be and no more. My energy is too precious to waste.

18. When I ache, it’s time to stop and be kind.

19. Sleep is precious. Fuck it, napping is empowering.

20. I have brilliant friends who fully support my tendency to drop in and out of their lives, energy dependent. I wish it was different but thank you for loving me regardless.

21. Pain does not have to be endured. Painkillers are acceptable and often necessary

22. I do not need to wage war with a body that struggles anymore. This is a body that has done amazing things for me and made me forever part of the best little person I know.

23. Comparison really is the thief of joy. People are living their own lives to the best of their capabilities.

24. It is no-one’s fault my capabilities have their limits. Least of all mine.

25. I hate to say it but my mum was right…. comfortable shoes and a bag worn on two shoulders is the way forward. Sorry I doubted you Mum!

26. I know this body best. There is very little point in being bamboozled by the medical terms and still not getting the help I need. No more struggling on, I will continue placing the right people and treatment around me.

27. There is pride and achievement to be found in the smallest things. Put my own hair up? Great. Put 3 loads of washing away? Awesome.

28. I will not feel ashamed for repeatedly hitting rock bottom. It is my right to cry and say this life is too hard. Because it is. But I will always fight on for my little family.

29. I will not lie. I will explain each struggle to my beautiful girl so that she understands why Mummy must cry sometimes. She will not be afraid of tears. She will know they are healing sometimes and that Mummy fights on.

30. I will always remember my place in my little family with a girl who loves me and a husband who supports and cares for me in ways I have never afforded myself so that I can enjoy our life together. I will not forget how lucky I am to belong to you both.

Here’s to a very successful 30s!

Happy Cerebral Palsy Awareness Month

No, it’s OK… you don’t actually have to be happy about it. This month, I do not celebrate cerebral palsy because the notion is ridiculous. I celebrate the determination of those I cherish as friends, of myself to live a good life in spite of it all. It’s not easy… It’s never bloody easy. But everything I have is mine. And I am embracing the Month for the first time ever to begin, with a full heart, the lessons I am charged with teaching my little girl about (in)equality, diversity, struggles, acceptance and self love.

I would swap my spine, my hips, my legs in a heartbeat. I am not ashamed of that and whole-heartedly believe there is no one alive with the right to chastise me or tell me I should believe otherwise.

You see, the untold trials of cerebral palsy may be taking me over long before I gave permission but it is not all I am.

This is Kev. My husband. The person that holds me when all I can do is sob and hate every inch of my ruined muscles. Kev who tells me I amaze him because I haven’t allowed myself to drown in these tears in 30 years. Because I stubbornly insist on carrying on.

He is the man that told me there was nothing I couldn’t do, nothing I couldn’t be, if I’d just let myself believe I could do it.

He is the reason I ever left my hometown. The reason I made home be somewhere new.

He is the reason I ever got behind the wheel of a car, the reason I kept going for 7 long years before that little pink licence was in my hand.

He is the reason I am only 2 years away from graduating with a university degree all of my own. I am the reason I started 8 years after all of my friends, but he is the reason I ever took that first step. Because he knew I could when I didn’t.

He is the reason I am a mother. The most sacred of all of my identities.

Mummy to this one. The most precious girl in the world.

This is Immy Squidgelet. 2 years old now and every inch herself. Funny, bright, helpful, inquisitive, loving, sweet… stroppy like her mum.

I never knew I could love someone so completely. That I could craft and meet part of me and think she was the best person ever. This little girl took part of me I never knew I had to spare and she made the best little human out of it, as if just to show me what I really can do. She amazes me every day. I still cannot believe I belong to someone so wonderful. I still look over at Kev and say “I’m her mummy. She’s mine!” The pride I feel whenever I get to say “my daughter”.

This little girl taught me why I must love myself. I am not there yet but she shows me why I must. If I cannot learn to accept the things that make me different then I cannot reasonably expect her to either and that’s just not going to work. I will not have my daughter so negatively affected by something she hasn’t asked for.

She is my reason for fighting on. There are days upon days where I just want to slump on the floor and give up and this one…. she need only come to me and say “Cuggle Mummy” and I have everything to live for. I will not let the part of me I didn’t ask for affect the part of me I am proudest of.

And so believe me when I tell you, I am very Aware of Cerebral Palsy Every. Damn. Month. But it aside, I can be proud of myself. I cannot hope for new body parts and so I must appreciate that I do in fact, have everything I need.

Immy and Kev…. you will never, ever know how proud and grateful this CP warrior is to belong to you both. I thank whoever is up there every day that I have you both and for giving me somewhere to belong. For showing me that CP is not all I am. For not letting me be alone with this. I love you both endlessly.