When does it stop? When do you know that you are there, that you have done everything you can possibly do to make your child's life the best it can be? When do you know that you've found the balance between plain normal life and intervention?
Miss T has had six appointments in the last week. I kind of wonder though in the middle of the night does it truly change the outcome in the end. Am I sacrificing her right to a normal childhood for the better? Miss T is so excepting of it all now but I don't know if she always will be. Sometimes I think the irrational part of me is waiting to stumble upon that doctor/therapist/teacher who can fix her. I sounds ridiculous even to me to read it back because I know there is no cure for PVL. I tell her story again and again but the answers remain almost stagnant. Am I just disappointed because I have the unrealistic expectations that someone may be able to offer me what I am ultimately looking for - normalcy, for the hard parts of Miss T's life to finish?
We've taken a few steps backwards at the moment. I knew they were coming. They catch in the back of my throat and are too big for me at the moment to put into words. The denial part of me thought she had had her deal but as she gets older the true impact of the prematurity, the IVH, the PVL, the ataxic CP is rearing its head. Miss T is starting to realise that life is different for her. How do I make that difference the best it can be for her?
3 comments:
I honestly don't know but if it makes any difference at all - I go through the same struggles.
It does make a huge difference. Sometimes I feel Ok with it all and other times it almost suffocates me.
These are the thoughts that go through my head hourly. Am I pushing my daughter too far? Am I asking too much of her? Am I jepordizing her in other areas by 'overprogramming' her. I wish I knew what the future will hold for her. I just to make life for her easier when she is older.
My daughter was a preemie and also has Ataxic CP. I would love to hear from you.
Post a Comment