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

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

πŸŒ† moved cities (twice)

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

πŸ’ got engaged

πŸ‘° 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.

πŸ‘©β€πŸ’» 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.

πŸš„ 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.

πŸ‘Ά 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.

πŸš— 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.

πŸ‘¨β€πŸ‘©β€πŸ‘§ 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.

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 rosΓ© 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 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.

“Look Mummy, who’s that?”

Yesterday, I walked with Squidgelet to the end of our street and purchased a walker.

*exhale*

My teenage self is disgusted with me. Scoffs that I have given up.

My 2 year old daughter didn’t bat an eye.

That morning she walked halfway to the library for Rhymetime holding onto the pram. All I had to do was tell her where to hold.

“No let go of pram” she promised me faithfully. There was no question that she would. She understands she needs to listen.

I showed her where to hold the walker. It was exactly the same. I was so proud of her.

I text Kev to say it had been bought. He told me he was proud of me for making such a huge step for my independence even if my pride was hurt and my 14 year old self sulking indefinitely.

“I know it’s a good thing…” I typed, “…but I feel so defeated and defined by it and it breaks my heart.”

It felt unnatural to rely on it, even if I know it’s not for all the time. It felt, rightly or wrongly, like my capabilities came in second after this unsightly lump of metal.

I started to cry, as softly as I could. I couldn’t help it. I was grieving, letting my teenage self let out her disappointment. After all, I never knew this is where I’d be at 30 years old. I don’t know what I could have expected when the medical profession and support services stayed tellingly silent. But I never thought being 30 would look quite like this.

Squidgelet frowned when she saw me wipe my eyes. “Mummy ow?”

“No darling. Mummy not ow. Mummy sad. What would you like to watch? Wiggles?”

She pondered it for a moment. “No Wiggles. Photos.”

All our photos slideshow on our TV.

Looking at me, photo after photo, she asked “Look Mummy, who’s that?”

With her beautiful big heart, Squidgelet distracted me from my tears.

Mummy proud, Squidgelet. Mummy so proud of you.

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”