Love Letter to my Little One vol. 3

Oh beautiful girl,

We are going through so much that I forget you are just 3 years old. Times have been tough for you & I, the world has barely stopped for 2 months now and shows no signs of slowing down. Nanny was unexpectedly in hospital and she and Granddad are such a huge part of helping us help you become the amazing young lady you are. It was hard. It was scary. We missed her lots. But Nanny came home for Christmas, we all took a little breath and hoped that her recovery would be kind and that 2020 would allow us to get back to normal.

But the world had other ideas and I’m so sorry for all that has meant for you Squidge. Your daddy, never ill a day in his life it seems, ended up in hospital for 3 long weeks like Nanny and I don’t think the shock has left us yet.

I’ve never had to be without your daddy, not in our 10 years together. I’ve never had to take care of you by myself. I’ve never had to worry about Daddy being poorly, or hospital visits or keeping on top of clean clothes and meals and work so that we have money.

I have never been so tired, so worried. Those weeks went on forever.

It has been one of the hardest times of my life and I am so sorry for every way it has affected you. More than I can even count, but this is why I had to get it all out.

Because in all of this, little one, you have been my rock. You shouldn’t need to be that at just 3 years old and for that, I am sorry. But I need you to know, I could not have faced any of it without you, much less survived it all. I genuinely think had I been on my own, your lightweight mother would have been in the pub every night, drinking wine to soothe her soul to sleep.

But you have been the motivation I needed. In all this time, when you must have been so confused and worried, you have never asked too much of me.

When you have seen me cry, you have wrapped your little arms tight around my neck and said: “Don’t cry Mummy. No more tears. I love you so much. Daddy will be better soon.”

You have shown empathy beyond your years as I have cradled you and let your warmth and love fill me up.

And if my tears still have not dried, you have wiped them away and hugged me again, as tight as you can squeeze, because you know squeezes make me happy.

You have become more independent. You will get yourself a yoghurt from the fridge, or ask to put the cheese inside your own sandwich. You’ve used your potty training step to climb safely in and out the bath so I son’t have to lift you and you have bravely shouted “Tangles!” when I brush your hair rather than crying through the knots.

You have blown your Daddy kisses every night to his hospital bed and inquisitively asked to see his healing “owwies” regularly so you know where to be gentle. You give the gentlest hugs and kisses and always say “I will not hurt you Daddy.”

It has been so hard. But as ever, you have taken everything in your stride. I feel horrifically guilty, because I haven’t had the time or energy to take you out and do something fun in weeks. You don’t know how important it has been to Mummy to just sit on the floor and do Peppa Pig puzzles with you, or watch you fall in love with the Aristocats for the millionth time from under our “snuggles” blanket. I’m sorry I haven’t been able to give you more when you deserve the world.

Daddy came home this week and I was so relieved to have him back with us, so that the house didn’t have to feel so empty and so quiet, that I stupidly forgot that he is not recovered yet, that there is still a lot for you and me to do.

You are a wonderful little nurse, diligently helping Daddy count out his medication, or taking your Paw Patrol pups to his bed so you can play together. This is clearly the thing that you have missed the most and your Daddy strives to feel better every day so he can make you smile. THe first thing you did when Daddy came home was climb into bed beside him with the Thomas the Tank Engine story book we bough you on your birthday, which you have read to Mummy every night since Daddy has been in hospital. My heart was so happy that day, so happy to see you together and you so determined to be gentle, but close.

You got very cross with me the other day when I told you a nurse would be coming to check on Daddy whilst you would be at nursery. You wanted to know exactly how the nurse was going to take care of Daddy’s owwies and clearly felt like this warranted a day off so you could make sure she was doing it right. It made me laugh and I haven’t laughed much, so thank you. But it is important to give you back some routine, you have been through so much, you need your play time.

I know Mummy has not been the most patient of mummies recently and beautiful girl, I am sorry. I try to apologise every time and explain. But i’ve said the word “stressed” now so much, you often don’t need me to explain now. You are such a kind-hearted girl, and you often apologise to me, your head flopped lovingly on my shoulder. I feel pride and sadness in equal measure. Proud because you don’t want me to be sad, sad because you think you’re the cause.

My wonderful Squidge, you are too young to understand a lot, and yet you seem to understand so much. And so, this letter is here for you when you are older, to help you understand that in all the stress and pain and worry and tiredness, all of which you are hopefully too young to remember, you were what pulled me through. My little girl, with her heart of gold, her endless patence and the best squeezes in the world.

Truth be told, on the days you have not been here and I have found myself alone, I have felt lost without you. It has felt like I have lost an arm and I haven’t felt that way since I dropped you off to nursery that first time when you were such a tiny baby at eight months old. I miss you terribly and only make sense of myself in all of this madness when you are back here with me.

We will not be going through all this forever. When Daddy is better, we have lots of plans to spoil you rotten, because you deserve it so very, very much.

Just, thank you. Thank you for being here, for being my wonderful, loving daughter. Thank you for being you.

All my love for you my darlin’.

Mummy xx

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.

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.

Medical fatigue

I don’t know if it’s an actual thing but I bet any disabled person would recognise the frustration and the impact of medical fatigue. That is to say, having your life run by a never ending cycle of appointments meant to maintain you.

I have spoken a lot about the impact that the deterioration of my condition is having on my mental health. I feel fragile often, overwhelmed regularly and cheated pretty much always. But I choose to own my feelings. I will not deny them because I finally agree that I am important.

But a new battle is apparent.

I cannot live my life how I, as a person, a mother want to live. I am not afforded that level of control.

Because even when I am able to stop working, maybe have another child and cherish my family, I will always be beholden to an ever growing roster of appointments.

At the moment, I am still trying to maintain my hours at work because know, money’s useful. But actually at the moment, I’m averaging 3 hours a week on appointments, not even accounting for travelling in the first place. The two together is draining me.

Yesterday was podiatry to talk through my hip pain when walking. Didn’t get much from it really. So instead I need to go back to the Functional Electrostimulation clinic and see if they have anyone that can support me. (Their little box shocks my weak leg into pulling straight. Using the leg as it should be after 30 years is strange and pain is to be expected I’m told!)

Today is physio and then counselling. Both absolutely necessary, the former of which takes 6 hours because I have to get the train because I can’t safely drive the distance. This results in less time with Squidgelet cos I have to swap my days off to accommodate.

Then there’s massages which constitute my most peaceful hour of the week. I wish it could be more often.

I know they all have vital functions but my God, can there just stop being things I must do.

I’m starting to feel more like a condition than a person. That has a real emotional toll. And so round and round it goes.

Medical fatigue is real.

The Only One Who Sees Me

This heat with a 2.5 year old who’s very emotional and trying to establish (read: push) her boundaries has been so tough. I have been in tears, I have shouted and I have hated myself as a result. I never wanted to be that mum.

Not able to lift her and soothe her during a crying fit in our narrow hallway the other day, I shouted, turned away and cried so hard I couldn’t catch my breath.

Squidge’s tantrum stopped dead and she crept back in, frowning with concern before she came and placed her baby’s bottle in my mouth because she knows, when babies cry, they need milk. My beautiful girl dried my tears.

Yesterday, we were planning to travel across the neighbouring city on the bus to see a friend and her girls. So looking forward to it. A big ask, but it felt like it was doable with Squidge mobile and the walker. People would know I was disabled, no worries about putting the pram down.

Except, walking with Squidge sat on the walker, every journey is twice as long because the wheels get caught between paving slabs, because the anti-tilt means I have to turn the walker round to pull her safely up and down kerbs. For an aid that’s meant to help me, I have to pre-empt everything. It gets tiring.

I had to coax her off the walker onto the bus so I could lift it up. She went to find a seat but I took so long sorting out my ticket that she came running back, crying for me not to leave her. I had to promise to finish my purchase at the other end of the journey and went to park the walker in the space. A kind lady took Squidge into her lap as I struggled, because the bus had already moved away. I’d planned to sit on the walker facing Squidge but my balance on it was so precarious, the kind lady insisted I take a seat, holding out her hand to me.

“You shouldn’t have to struggle like that my love” called out another lady. “That’s what the disabled seats are for.”

She pointedly looked at a lady in said seats with a shopping trolley who muttered “If she wants it, she can have it.”

I didn’t say anything. After all, I didn’t know the lady’s circumstances but it was quite hurtful not to be addressed directly. It just makes me feel like people are too embarrassed to recognise me.

The second lady, having watched me struggle to sort my ticket, asked if I shouldn’t get a concessionary bus pass. I told her the truth: “I was allowed one in England but the rules in Wales say not because I can walk.”

“That’s disgraceful.”

The first lady chatted with Squidge and I all the way until her stop. I wish it could have carried on that way.

But to the busy city crowds, Squidge and I were instantly invisible. She wanted to walk with me after so long sitting on the bus so well. I walked her not 50 feet into the bakery to get a drink. People leant round me and the walker to grab things as I talked Squidge through the options in the fridges and when we were waiting for someone to step back and let us leave, at least half a dozen people walked through the door with no thought to the fact the walker or indeed, the toddler might need a bit of room to vacate.

“Oh for God’s sake!” I fumed quietly.

“No Mummy!” Squidge reproached sternly. “No say that!”

I smiled. “Sorry baby, you’re right.”

Then a group of schoolkids came racing across the pelican crossing that I was trying to judge as flat enough to roll Squidge across in the walker. They were coming right at us but I thought “They can see me, they won’t run at a walker.”

I was wrong. They swarmed me, Squidge and the walker and I felt myself tense in preparation for a fall. It didn’t come but my nerves were so on edge in these crowds with uneven pavements that I screamed angrily after them, with no effect obviously: “Yeah, don’t worry about me.”

We waited for the green man as the city crowds ignored his absence and ran across the road anyway. When it was time, we went across the road to the stopping point in the middle, except the walker hit the lip unable to push up. Crowds kept coming as I felt the walker tilt and began to panic. To stabilise, I knew I needed to turn it round to wheel Squidge up safely. I tried to do it as quickly as her safety would allow but the crowds just kept coming over the crossing. No-one cared to see us there struggling.

I finally managed it, my stress increasing when the same happened again. Why could no-one see me?I felt the walker lurch again and cried out in panic: “Oh God, are you OK baby?”

Finally, without a word, a man reached down and lifted the walker over for me onto solid ground.

“Thank you.” I said. “You’re the first person that’s bothered to see me here today.”

How could so many people be so wilfully ignorant to someone with a mobility aid, with a child struggling? I could never do it, even though I’d be little help. I’d have to try.

The simplest things were beginning to feel too hard and behind my sunglasses, I began to cry. The city was busy and loud so I didn’t bother trying to muffle the sound, half wishing someone might slow down and ask me if I was OK or needed help. Nobody around me did.

Instead, my beautiful girl said: “Don’t cry Mummy.” Oh, how I loved her then.

“I’m so sorry baby. I’m sorry it’s this hard.”

I tried to coax her onto the next bus to our friend’s.

“No” said Squidge.

I was stressed, so terrified she was about to throw herself down in the street for an emotional tantrum.

“Please darlin’.” I pleaded. “I can’t lift you with the walker.”

But she didn’t tantrum at all. “My no want to go on bus.” she said calmly.

What was the point trying to force her? It just doubled the journey and effort of trying to get her home safely when I’d be in pain from the effort. I think she knew that.

“I go home and see my daddy.”

“OK baby. Shall we go get an ice cream from Maccy’s first for Mummy’s superstar?”She walked all the way until she recognised the Golden Arches. I text Kev, telling him how defeated and tearful I was that I was so invisible here, that I was ashamed I had let my friend down.

(I shared the same sentiments when I apologised to my friend. She promptly told me I shouldn’t dare to feel ashamed for trying as hard as I had. I love her for that.)

I also told Kev that Squidge had been such a comfort, I would buy her another ice cream if she wanted. I took her into the disabled toilet to get changed.

Hot, beaten and emotional, when she sat up, I asked: “Can I have a hug?”

She gave me the sweetest tightest cuddle yet.

“I got you Mummy.”

I broke down crying in my toddler’s arms.

“I’m so glad you do, baby.”

She was only coaxed onto the bus home by promise of seeing her daddy again.

She was exhausted, meaning the decision not to carry on our journey across the city was the right one.So sweet right? Except I was full of dread. I couldn’t carry her from the bus and the walker. I’d fall. I needed her to walk off the bus. So I had to lift her into my lap and rock her awake, cradling her head against injury thanks to the erratic braking of the bus and throwing us forward.

And today, my shoulders and wrists hurt so much from the effort of having to lift the walker up over every uneven paving slab out there that Squidge even attempted to lift it for me.

I cannot describe how sad I am to live in a world where only my 2 year old daughter cares to notice how hard it is becoming for me to get through every day. It’s so bloody shameful.

But I could not be prouder of you baby girl. Thank you for seeing me when the world ignored me. I’m so glad to have you. I know now more than ever I couldn’t do it without you.

Mummy’s medicine

Pain is a huge part of ageing with cerebral palsy. Whilst its omnipresence is unavoidable, the levels of pain I wake up with every day are unpredictable and draining.

The impact on my emotional wellbeing is getting larger every day.

Yesterday I woke up with very painful tension in my neck and shoulders. Movement was too hard and I was reduced to slumping on the sofa.

Kev climbed in behind me and began to massage the tension. I cried out in pain.

When she was younger and Squidge’s saw that, she pushed Kev away, shouting “No Daddy!”

Yesterday however, Squidge saw and heard my pain and climbed into my lap. She wrapped her arms around my neck. “Ohhh!” she sang empathetically.

But I struggled to hold her as Kev continued apply the necessary pressure to my stubborn muscles.

“Oww!” I whimpered, unable to hold it in.

Squidge pressed her hand tenderly to my face, stroking my cheek as she asked: “You OK Mummy?”

My heart swelled as she worked so gently to distract and soothe me. I didn’t want her to think that her daddy was hurting me so encouraged her to climb into Kev’s lap and feel the tension for herself.

She knew what the solid lump was as soon as Kev helped her feel it with her little hands. “Mummy ow!”

“Yes baby. And Daddy is helping take the ow away for Mummy. It is Mummy’s medicine but Mummy is not very brave, so Mummy say ow.”

“Do you want to help Daddy give Mummy her medicine?”

“Yes.” she said, hands poised in the same position as Kev’s and bless her, she started pushing gently on the lumps.

Kev’s pressure increased, needing to use his elbows. So Squidge climbed down.

“Ow!” I cried out loudly.

But Squidge frowned, telling me sternly: “No Mummy. No ow. Mummy’s medicine not ow.”

We laughed together. Our wonderful girl had listened so well. She knows that medicines exist to make us better. Therefore, we have already taught her it is useless to give into pain.

I like that. Our parenting means thst she already knows that pain is there to be pushed through.

We’re not going to be defeated. Mummy must take her medicine.

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.