For my son, i generally can persuade myself that "yes" of course he will. On a daily basis i make very minor decisions for him such as what he will eat, where we will go that day etc but on the grand scale of things i don't think these decisions will be resented when he is older. I could be wrong. For all i know on his sixteenth birthday he could storm in to the living room shouting that he will never forgive me for giving him broccoli when he was two, that it ruined his life... but i feel this is very unlikely.But, for my daughter I make big decisions on a fairly regular basis, some of which could have a life long impact and some of which can have horrific short term consequences if i make the wrong choice.
Decisions for my daughter focus more on:
- Am i going to up the rate of her j-tube feeds today and risk vomiting, diarrhoea, cramps, choking and a generally stroppy child?
- Will i offer her food tasters today - even though the doctor has even said these could pose a life threatening risk?
- When she's been screaming for hours and appears to be in pain, do i take her to hospital even though she clinically looks OK to me?
- How much physiotherapy will we do today - will i put you in the splints even though you clearly hate them but there's a small chance they will help?
- Will we go to a play centre today and risk you catching a bug from the other children which poses a far greater risk to you than healthy children?
A lot of decisions i make now i know may not be what she really wants. I try to make choices which i feel are in her best interests but really how do i know? The main one which bothers me specifically is the use of splints. I've had to use splints a lot in my life and hated them. I hated physiotherapy as well and when the use of my right hand was reliant (the doctors felt) on physiotherapy and splints i decided not to do it. I wore the splints as little as possible and not once did the physio exercises at home. Instead, i played. i sat at the piano and tried to paint and drawer and with that my movement improved as well as my quality of life. My struggle is knowing how much time we waste everyday doing boring exercises, sat in splints, trying to do food tasters and her coughing and spluttering and clearly hates food in general. These things right now have a negative impact on her life so how long do i allow it to continue and is there a way for my daughter to truly make an informed decision on these things and communicate it with me?
My fear is that she will one day talk and tell me she hated that i allowed her life to be medicalised. That i have made the wrong decisions and that she just wished i had accepted her for who she is and enabled her to enjoy life in her way rather than trying to fit her into this world.
My hope is that she will one day thank me for all we have done. That she's glad i pushed for her to develop as much as she could and that she is glad for the time spent on all the medical things.
My darling, Will you thank me?
