I did used to think Jacks care needs were quite high but I was wrong. How do people manage without it getting to them. Jack has changed and it devastates me. He cant walk or lift his body, his hand is basically just hanging there with no purpose. He is heavy making the simplest things really hard. By 4pm my back is breaking. His tube feeds have increased and his medication doubled so I only get 3 hour blocks of sleep through the night. Jacks behavior is increasingly difficult with him emptying his nappy all over the room and car about twice a day. I think I spend about 2 hours a day just doing laundry. So I thought he was a challenge before but what did I know. Im left with about 5 minutes to give my daughter attention and even less time for myself. I know people out there are doing it much tougher then me so how do I stop feeling sorry for myself? I want the old jack back. The boy who could walk where he wanted and get himself in and out of the bath, on and off the bed as he pleased. My little boy who could easily play and do a lot for himself. I want my little helper back, all he does now is watch me because he cant stand or contribute which makes him frustrated and sad. My worst feeling is that no one really understands. No one is shocked over his stroke. If he were a regular active 7 year old would friends and family be more helpful or because Ive always dealt with his disability its no big deal. Im becoming resentful of active healthy kids with big families and its wrong of me. Im annoyed at those around me for not understanding and its ridiculous of me to expect them to. Im such a Control freak that I dont take help even when Im offered it. The most awkward question to be asked is....how can I help? Because honestly I dont know how anyone can help. I guess I should apologies for not coping as well as I should be.
Posted on: Sat, 03 Jan 2015 22:41:26 +0000
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