Having a child with special needs I find that somewhere amongst all my thoughts for that day or that week, there is always a thought, worry, concern about Ellie, thoughts about how WHS affects her, me, us our life.
The reality is, this is our life.... Ellie has WHS, Ellie does have special needs, there is no escaping that. However sometimes I would love to escape the worry, concern, looks comments etc. I try, I do... but those thoughts creep in when you least expect it. Lately that has been between 9pm and 12pm.
I try to switch off and that is easier said than done.. but that is my goal for the moment, to try and not worry to much about Ellie and just let Ellie be Ellie.
I also seem to worry the most right when I am trying to go to sleep- then my mind is racing with thoughts and I can't turn it off. I agree with you to just let Ellie be Ellie. I am trying to think the same way with Dylan and it helps. Hang in there. :)
ReplyDeleteTotally agree with this post, it's a good goal to have thats for sure...I'm just not personally convinced it can be conquered yet, I am still trying really hard too.
ReplyDeleteKeep up the amazing job you are doing...being a fantastic advocate for Ellie.
When you figure it out, can you let me know? A day hasn't gone by (8 years and counting) where I haven't had a worry, a concern or a thought about things I should be doing better.
ReplyDeleteI think it is part of being a Mum to be honest because I am always thinking about Braeden as well.
I have been wrestling with this lately as well. I jump between acceptance and then switch over to overwhelming worry and concern. At least I know I'm not alone.
ReplyDeleteEllie is just beautiful. i love her shirt in the pic at the top. What a precious girl! I love coming over here, it always makes my day ;)
I agree completely Tara, even though we are very accpeting of our life an the way that ELlie is, that doesnt mean that worry is far away
ReplyDeleteThanks for your lovely comments... Im glad that Ellies story makes you smile : )