I’ve ummed and ahhed about writing this blog because it’s to do with my youngest daughter and normally, my blogs are about me and living with cancer. I guess this does overlap somewhat.
I first knew something was different with D when she started to refuse to wear her shoes, socks, knickers, leggings when she was about 5 yrs old. I don’t know how much money I spent on trying to find items of clothing she was happy with but it was a lot! I tried seam free and even cut the labels out. Once we found something she liked, we stuck to buying the same brand every time. She’s the same now but it’s not as easy. She’ll currently only wear Tesco leggings and Next underwear. So we’ve stocked up. She outgrew her school shoes but wanted the exact same pair which meant ordering online from Clarke’s. She also recently got new glasses – yep, you guessed it, she chose the exact same frames.
It’s who she is and how she rolls. She knows what she likes.
Daisy has huge anxiety and can have a meltdown most mornings before school. She hits herself, shouts, cries and says she hates life and wants to die. We’ve just been refused help from one organisation because she does all of this at home and not at school – she masks whilst she’s there and they only go into the school setting?! Ridiculous huh but sadly not an isolated case.
She’s slightly behind academically and struggles socially. She appears slightly younger than her peers and this is becoming more apparent the older they get.
She’s a perfectionist. She’s kind. She’s sensitive. She’s tries her hardest.
After a typical day at school, she is pretty wiped out and spends most of the evening ‘decompressing’ in her room. Sometimes she won’t speak to me for a good couple of hours.
She often shouts at me (during a meltdown) that I don’t understand how it feels. And I don’t. I have no idea and it really upsets me. I wish, more than anything, I could take it away.
In January, we had our first appointment with a paediatrician to assess Daisy for an autism diagnosis. We’d been waiting a long time! The doctor saw tendencies during the appointment and we’ve now been referred for the next assessment – the only trouble is, there’s at least a 2 yr wait!! That’ll be about 8 years before anyone has taken me seriously.
Two more years of us, me, D and her sister, living and dealing with the meltdowns, walking on eggshells, butting heads with the school and fighting her corner. Having to explain her behaviours to people, adults, you’d think would understand. Having to watch her try with friendship groups but still being left out. It breaks my heart.
But I’ll tell you what’s really upsetting me just now and I can’t shake it. The fact that I’m going to die and leave all three of my children. I won’t be here to guide them, hug them, tell them things will be ok. I might not see them get married or have children of their own. Things taken for granted.
But its a little different where D is concerned. As her mum, it feels like I’m the only one who has her back. I won’t be here to fight her corner, to guide her through life and the tough times it will undoubtedly throw her way. I won’t be here to explain to people why she’s the way she is. Why she can say things she doesn’t mean. Why she sometimes comes across as rude – something I’ve been told a lot lately! She’s not rude, she just sees things very black and white and says what she thinks – her brain doesn’t process things like a neurotypical persons would.
I can normally box up the whole ‘dying’ thing but just lately I’ve found it really hard to ignore it. I feel frustrated. Sad. Angry. Why us? Why? Why? Why? I’m off to see my counsellor at the hospice this week to talk things through. To try and close the box again.
I did explain to the doctor that I ‘might not’ be here in 2 years – I’m aware that it sounds dramatic but it’s true. She said she couldn’t promise anything. So I guess it’s us against the world, just like always.
Life feels so unfair sometimes.