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3yo hugs me, smiles a bitter-sweet smile, slowly begins to squeeze my throat with two hands & whispers hauntingly, “Are you choking, Daddy?”
- Everyone is fighting their own battle.
- Everyone deserves to be happy.
- Never judge a book by its cover.
- Never assume.
- Always be grateful.
- Always show compassion and empathy.
- Smile, it could help someone who’s feeling invisible that day
had a well stressy day with angry amy-rose. was with my mum all afternoon.. we went to home bargains (i love it there)
i had held amy so long i thought “nah you can just chill in your pram now plz” and omg did she scream. she cried and cried. but i thought no, i have to persevere she cant just have me ALL day holding her, my backs killing.
anyway this shop lady comes over like “is she okay?” (im thinking well err clearly not because she’s crying) but i said “yeah she just wants to be held that’s all. she is actually tired though” and then she saw her tube and was like “omg is she poorly?”
i thought ah here we go. the usual bit where i have to get sad and explain all her problems to a total stranger…
so i started to explain.. next thing she cried.
she had lost two baby girls to brain problems.
me her, mum and another lady were all in tears!
she has 3 healthy awesome boys.
she told me what a fantastic job im doing and asked questions about the tube…
NEXT THING another lady shows up.. her daughter is 100% tube fed. she is 21 but now suddenly very very ill and she said she’s in a hospice and they think she will die in the next month.
we told each other some really nice words. i wished her all the best and told her to take care.
one lady had to leave as she got too upset.
then i bumped into someone from work and had a chat. her daughter was really cool and had a septum piercing.
i came home so drained and frazzled.
i have too much love for the people i follow on here.
like, if i met you id probably be a bit in awe of you as if you are famous.
i get so many nice messages and comments when im being a whingey jerk.
thanks all of you. there is so much you can’t post on facebook that you can post on here and feel ok about it. sending e-love and stuff like that.
i hate when you read about children with disabilities and it constantly refers to every person with either tube feeds, cerebral palsy, developmental delays, hearing issues, behavioural issues as severe.. amy has ALL of those.
not just one or two of them. all of them. and more.
ugh this is hard. i really hope they begin helping with behavioural training soon, ive tried so many things myself that havent worked.
i dont think people realise how much extra work it is.
with a “normal” baby you can hand them a bottle, or a toy and they will occupy themselves for a while. yes they can still be hard work and demanding.. but im having to distract her for a whole hour for every feed (4 times a day), then play aside from that (i mean what do you do when youve done it for an hour?i only have so many games and toys!) and then her naps are incredibly short.
i know i complain a lot. amy is my world. she really is.
she isnt awkward, it’s what happened to her brain that makes it harder for her to enjoy life independently for any set period of time.
she needs someone to always show her toys and play with them in front of her. it’s hard to get her hands to touch anything.
oh god this is so hard sometimes.
this is what happens when im home alone with her. my mind takes over.
it’s my lack of sleep not helping.
im so fed up of feeling helpless all the time.
im glad for tumblr. not sure where else to go with these whinges i have.
Had enough of today already. Fucking hell.
such headache. eyes so sore. such shout from baby. wow
can we please destroy this idea that a person has to talk to you every minute of every day to like you
texting all day is not natural
force communication all hours of the day is not natural
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