So today I sit here and try to work out why I am a rubbish friend, neighbour, active in school parent, Daughter, etc
I mean I don't mean to be all these
Last week I had one of those reflect upon my life moments. I thought of an old friend and i suddenly felt terrible. This is someone I care
for deeply and someone who I think I've let down.
It then came to me that this is just one feeling of guilt I have in a long line. It’s nothing terrible the thing I am guilty of
here it’s just something I should have been doing to help her but didn't. And looking back now, I can't say or explain 'exactly' why.
Like i can't say 'exactly' why we still have things to move out of our old house when we moved out 6 months ago.
I can't say why I haven't yet paid bills which need paying.
I don't know why i forgot that old aunt flo had a hospital check up last Tuesday. And I can't begin to remember 'exactly' why I've cancelled so many coffee dates / nights out with
friends over the years.
All I know is that I'm a serial canceller of everything.
The truth is though I don't want to be any of these things.
The truth is I cannot cope with extracurricular anything.
I get up every morning on edge. I'm worried about how Molly will be and what the day will bring.
washing still needs doing though, the other children have to be cared for and taken to school happy. I am not depressed by the way (well that said don't come near me when the pmt kicks in every month). I'm happy, i am always happy! Well 98% of the time.
So the housework still needs doing, the pets still need feeding /cleaning. The cooking needs to be done. Someone has
to do the shopping. (Mr Me works for the both of us) our situation with Moll being so frequently ill means i have never been able to earn a decent income. He is earning solo for the 6 of us.
any spare time I have (usually when i can’t sleep) thinking of ways to change things which are wrong concerning Molls condition. And i put a lot of effort in to supporting people who are as frustrated as me with this disease.
I read and research everything I can to try and find a way to make Molly better. Get her the treatments she needs and to raise awareness to her condition.
I also do the occasional artwork, that is also for others.
I don't care much if I don't go to the spa (actually the only spa I’ve ever been to was a local corner shop with the same name)
I’m not a selfish person i haven't been to the hairdressers since 1996. My mascara costs £1.99 from Boots and I do nothing beauty or otherwise for myself. (Except for
buy shoes i love shoes).
That doesn't bother me though because I'm happy! My kids are happy my husband is happy we all laugh a lot.
wonder if people realise that I'm just scraping by, juggling all this necessary run of the mill ‘normal’ stuff?
Anything extra to this normal stuff generally spins my
brain and I find it difficult to fit in. And that's because when you have a poorly child there are not enough hours in the day.
Today I have had to almost carry her to the toilet. She is in chronic pain. This pain thing
alone fry's my brain! Leaving any ‘normal’ things to do on top of this a scrambled confusion.
We have got a pain relief band; we change sites with
it on her body when the pain gets too much even that takes a while.
We have a strict life dependable medication schedule.
We have a physiotherapist. Molly is always in pain afterwards. And then
there's the daily injection. (Another brain fryer)
Molly's also starting a new health therapy weekly to combat the pain of the physio.
We are seeking to have hypobaric oxygen therapy. This will take another 2 days out of our week.
This is without special dental treatment she receives.
And don't get me started on the hospital appointments all around the country.
This is all when she is well (Well... well by her standards)
When she's poorly
you can include daily the chest physiotherapy. The autogenic drainage therapy. The oxygen checks, the blood pressure checks, the
nebulisers and extra asthma medication.
I'm not moaning about all this btw it's just our way of life and believe it or not we are the happiest family I know.
I'm saying is. Although I can't 'exactly' remember on that particular day why I was late or I cancelled, or why I didn't do something I said I would. You can bet your bananas it's something
to do with ALL the above.
This has been my life for 17 years. I'll do anything to make her better and so will remain a little bit crap at everything else until that happens. I can only apologise because I do feel guilty every
day for the people I let down. But just please know I don't mean to be this way it’s just the way parents with ill kids survive. Much love xx