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.

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.

“If you say 3, we’ll make 3!”

Finally, good news!

The one recommendation I managed to find on Google for some kind of parenting aids was

Retired

Engineers

Making

Anything 

Possible

They have volunteers nationally, so please do check them out!

Anything I could think of that’s not available on the open market, they’d have a stab at making. Music to my ears.

I asked for a sling built into a top, so that I didn’t need to faff with straps whilst Squidge was half asleep or screaming for a bottle, to enable me to carry her safely. I waited for them to say it was impossible, that I’d just have to cope.

But no. Roger of REMAP Newport and the lovely lady he bought with him nodded at my description and by way of reply were describing what they could create for me – a smock style top designed so that Squidge can sit forward facing with her legs dangling down in the frog position. All in one piece, worn straight over the head, no straps.

It seemed too good to be true.

“How many do you need?”

“Oh I don’t know, babies are messy aren’t they? 2, so we have a spare?”

“If you say 3, we’ll make 3.”

The lovely lady whose name I can’t remember (REMAP insist on bringing chaperones when they visit you at home, just for peace of mind!) coo’ed over Squidge – even asked for a cuddle. Squidge loves meeting new people – anyone that is willing to tell her she is beautiful, which of course she is. 

They were full of compliments for her beautiful auburn hair (God forbid you call it ginger in front of Kev!) 

I was full of praise and thanks. So far, they are the only organisation that hasn’t made me feel like me and my little girl are out in the cold on our own.

They didn’t mind talking with my babbling Squidge while I slung her nappy in the bin.

I asked if they had many requests from disabled parents. Apparantly they do, lamenting how woefully undersupported we are as a demographic. I’m relieved to know I’m not the only one out there – I was genuinely beginning to feel like it!

Wonderful people. They made the whole thing seem so easy and straightforward which to be honest is exactly what I needed at this stage in my parenting life.

I can’t wait to carry my girl safely around. I might even manage to dart over the road for a pint of milk rather than having to wait for Kev to come home.

And all from retired engineers up and down the country. They want nothing from me, other than to make my life easier because they can.

Right now, they feel heaven sent. Squidge and I are not alone!