50 days of River

Fifty days of River: Connection, isolation and everything in between.

It’s Only Wednesday(and Thursday)


Wednesday Morning: The Crash

6.30 a.m. came round quickly this morning.
I know I said my positivity was low but I didn’t think I would crash this fast.

It’s 1.30 p.m. and I’ve been crying for over an hour. I’ve gone back to bed and I don’t want to come out.
River is watching endless YouTube and keeps shouting for me but I can’t go.

I’m supposed to be leaving the house in ten minutes to go back to the theatre to watch Summer’s performance but I can’t face it. I can’t do it.


Getting Everyone Out the Door

Summer’s friends arrived around eight this morning. They played well together, chatting about the new Wicked film and putting on make-up.
River was oblivious to them, forever running and jumping to his “Monster Hunt / Minion Hunt / Vampire Hunt.”

I did the usual chores, made Summer’s lunch. Kike left for work and I managed to get the four of them out of the house on time.

River is becoming more confident leaving the house, which is both good and bad. This morning he opened the front door, ran up the path and just stopped at the road, toes dangling over. The girls hadn’t even realised he’d left the house. I’m not sure he would have stopped if something had distracted him.

Kike needs to get the top door lock. We all began walking to the theatre, third day in a row, so he knows the route.

He doesn’t like stepping on the leaves, which this season makes tricky progress. I encouraged him to jump over them so we could catch up with the girls who had wandered a little further ahead.

He looked up.

“GIRLS, WAIT!”

He ran. I ran after him. He caught up but as the girls slowed near the crossing, he ran straight past them and into the road.

The girls froze; they know not to cross without an adult.
A man across the street spotted River and started to move, but luckily I was already there.
He thought it was a game. Laughing, jumping, thrilled. The girls giggled too.

I wasn’t laughing.

“You wait at the road!” I screamed.

Nothing.

“No more walking then.”

“OK, Mummy,” he said, hopping into the pushchair.

I praised the girls for being safe around roads and not running after River. But also that we must help him, if he is running past, stop him and don’t laugh. He doesn’t understand it’s not a game.

I was sad, tired and desperate for a break.
I pushed him the rest of the way, said goodbye to the girls and, as expected, the “I WANT MOVIE THEATRE” began. Then it started to rain.
Quavers, cover down, walk home.


Back Home and Falling Apart

We got home around 10.30 a.m.
I told myself, I can do this.

Ten minutes of TV, then I started sorting River’s room. It’s a mess, the whole house is. I brought his toys into the living room, turned off the TV and put on some music.

“I WANT RICE!”

It’s 11 a.m. but I don’t have the energy to argue. I make it.

Later, I find rice in his hair, on his top, the rug and all over the sofa.
We build a marble run, which lasts about four minutes before he shouts because the balls aren’t doing what he wants. TV back on.

I go back to his room, hoover and clean. It looks the same, just a bit cleaner. I can’t figure out where to put the hook for his clothes or his new timetable. My head hurts.

Then I start to cry.
I’m so tired of making all the decisions, of keeping everything moving.


Missing Summer’s Show

By 12.30 p.m. I know I’ve got to leave in an hour but I can’t.
I can’t face it; the pushchair, the packing of the bag, the rain, the screaming, the polite smile from Summer as she realises River comes first again when I inevitably will have to sit with him the foyer.

I crawl into bed and cry until 1.30 p.m.
My face is red and swollen; I can’t go out.
I message my friend to ask if she can film it and wave for me.

She replies instantly, ‘of course‘ and offers to take Summer home too. Relief mixes with guilt.
I know Summer will look for me in the audience but I hope the surprise playdate after softens it.

So that just leaves River, endless YouTube and a broken me.
I wash my face, take deep breaths.
It’s only Wednesday. Still four more days to go.


A Little Bit of Repair

Kike comes home and suggests I go for a break.
I walk up to meet the girls during their post-performance meal.

Summer asks why I wasn’t there.
I mumble something about River. She nods, she knows.

My friend buys me a wine. I try not to cry in public, and somehow talking it through helps. Hearing about something else also helps and I feel a little lighter.

Later, Summer and I walk home, singing Eurovision tunes in the dark streets, picking up fried chicken for Kike.

At home, Kike’s followed River’s new visual timetable, he’s bathed and ready for bed.
We let Summer stay up to watch The Traitors. It’s half-term after all and things feel OK again.


Thursday: Trying Again

I wake up determined to go in with a positive attitude. My new notebook says You Positive Thing! (or something like that).

But that feeling is creeping back in. Yesterday I had the feeling that I couldn’t catch my breath, my chest felt tight. I get up, do the usual chores and make a little list of things I want to do. Mostly tidying and sorting but trying to be organised about it.

Sorting River’s room yesterday has spurred me on to tackle Summer’s. She’s even promised to help if I paint it once it’s clean.
I make it to 9 a.m. before slinking back into bed. I don’t have the energy. I just want to sleep or sit in silence.


The Shed and the Timetable

Obviously I can’t stay feeling sorry for myself for long, so I go back to my list:
Put toys in the shed.
I can do that.

I put my shoes on, River is screaming for Monster Hunt, I oblige and he’s off running and shouting at the TV.
I go into the shed, it’s a mess. There’s a big box blocking the door so I can barely get in. I feel weak today. I turn, defeated at the first hurdle and go back inside.

I go to get River’s timetable.
First thing on the list: Get dressed.

We’re now taking River into his room and making him get dressed in there which I’m not sure he’s enjoying. I point to the pictures on the timetable. TV is directly after Get Dressed, so this isn’t exactly a hardship.

“NO! I DON’T WANNA!” (new phrase)

I stay calm and point at the pictures again.

“First: Get Dressed. Then: TV.”

“NO!!!”

Floods of tears. This continues for 45 minutes.

I know what you’re thinking, maybe just let him stay in his pyjamas if this is causing so much stress. But if I do that, do I not challenge him ever?
He likes his clothes, it’s not a sensory thing he just doesn’t want to do it.

I don’t shout. I just sit in the noise until eventually I carry him into his bedroom and gently start getting him dressed. He screams and tries to hit me.

Once he’s dressed, I point to the picture of the TV. He immediately stops crying and says,

“OK.”

We go back to the lounge. He’s tired himself out, so he wants me close. We watch TV for a bit with big cuddles.

Once he’s settled again, I decide the shed is not going to win.
I go back and move the box and all the other stuff that’s behind it. I start to pile up some toy storage boxes when everything falls down.

I can hear River screaming inside and my phone starts ringing.


The Phonecall

It’s my Dad, just checking in.

“How are you doing today?”

I go to say I’m OK as usual but instead:

“I don’t think I am OK actually, Dad.”

The feeling comes back very quickly, I can’t breathe, my chest is tight. My Dad is talking but I’m not saying anything, just fast breathing, tears and some odd noises.

He doesn’t know what to do but I know I have to calm down.
Just breathe, Sarah.

I manage to breathe and get some words out that I’m OK. We have a chat about how it’s all getting too much, how Kike and I don’t have family members who can help, how friends can’t help with River and how we can only ever give each other the odd hour out of the house.

Dad says I need to look seriously into some extra help as soon as I can.
And I know he’s right.
I will break in the end.


A Bit of Progress

The phone call finishes and I finish in the shed. I go inside to start lunch prep, turn off the TV, redirect to the timetable, much to River’s upset, it’s toy time.

Luckily, Summer starts and he’ll play with her. They play noisily but happily long enough for me to produce lunch.

I get a bit of quiet time, where I return to the list.
Next task: Sort Summer’s room.

This needed more of a breakdown. I’m sure lots of you use SMART targets at work (Specific, Measurable, Achievable, Relevant and Time-bound).
‘Sort Summer’s room’ is not a SMART target… There’s so much crammed in there!

So I rethink:
Put Summer’s clothes away.
Sort toys under bed (keep, bin, donate).
Clean floor and skirting boards.

That took four hours. She’s made a little ‘village’ under her bed with her toys. It’s very sweet and something I used to do.

I can’t cross off “Summer’s room” on my list, but I’ll know better for tomorrow’s list, perhaps Sort Summer’s books will be next.

River has quite enjoyed Summer’s toys coming in and out of the living room. He even went and got one of his toy trays. He played for about three minutes then tipped the contents on the floor but we’ve got to start somewhere.


The Evening Reset

My mum was supposed to be visiting this morning but she was delayed and then stuck in traffic. She arrived about 2.30 p.m.

River was very happy to see her and I said he could play a game with her on his iPad, mainly to stop him throwing himself off the sofa.

Kike came home about an hour later and I went for a walk, bought wall filler and stopped to write this.

He is out this evening so this is my break for the day. Two hours, got to use it wisely.


Looking Ahead

Tomorrow is Friday. Halloween.
I need to dig deep and try even harder to find my positivity.
Kate is coming over, which should help.

I need to find some longer-term solutions regarding extra help, keep going with the visual timetable and remember to keep breathing.

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