I want to change my name to dad. Chloe shouts Mum prob every min: Mum move my legs, Mum pass me this, mum just do this, Mum I’m hungry, Mum I feel sick, Mum I’m tired, Mum Mum Mum! Not once Dad.
Dad works I had to give up work as we have no childcare provider for disabled children. I wouldn’t change this but I would like to be dad for the day!
We spend our days trying to leave the house, we are always late! We have cough assist first thing (only took until Chloe being 5 yrs to get) then reflux medication, liquid salbutamol and possibly antibiotics. I get Chloe’s clothes out she hates them we re try again! Her afos hurt to get on due to her ankles being strained. Her hair takes ages to do due to her floppy head, she eats crisps for breakfast as she’s still full from her over night feed. I grab jeans and a top, brush teeth and hair and I’m done the walking zombie look might be heading back in fashion soon!
We finally get to go out and there is no disabled car parking spaces, never mind we park our wav in a normal space and struggle. Then Chloe wizzys out in her fund raised electric wheel chair hopefully no one has blocked dropped kurbs this time! Time for the stares! Ive gotten used to this and I honestly couldn’t be prouder.
We get home late again and I realise I haven’t done physio her dinner time meds are late and her 15 yr old brother is still in bed. The guilt is constant.
We make dinner I try and clean but end up giving in and playing with Chloe.
Dads home from work the breakfast dishes are still on the side the house is upside down and I feel guilty again, he helps with Chloe and helps make tea we all eat together my favourite time of the day, mines cold I’m still feeding Chloe her food, she’s too floppy, I’m watching out for reflux and choking I’m making sure she chews every piece we’ve had too many choking episodes and I can’t let her brothers see that again. I can’t loose her to choking. She likes her food.
Now It’s bath time I try and clean the bathroom whilst she’s in her bath chair playing I’m doing her night feed and meds whilst she’s busy, I then do bath stretching on her legs and ankles wondering if we are getting more range, Chloe’s protesting she doesn’t want SMA.
We get her in bed and do chest physio read a story which turns into 3 and dean stays with her until she’s asleep. I’m doing the washing and tidying around boys are on their Xbox I feel guilty again.
Chloe wakes continuously in the night due to pains and repositioning I’m shattered. She wakes at 6am as her dad leaves for work. The days restart again.
I look at her everyday and literally burst with pride my daughter Chloe, she’s feisty, knows what she wants and is very strong minded. Most of the time I think how have we got here ? How have we created such a perfect little woman? It’s blooming hard! I’ve learned to question everything, research everything and fight for everything
She’s doesn’t let SMA stop her ❤ never give up ❤