So. We're away again with the boys. We're in Halifax, Nova Scotia (just a few hours away from home). We arrived yesterday afternoon and will head back home tomorrow after lunch. Ben has his Conductive Education assessment appointment tomorrow morning. So we decided to make a little trip out of it.
We've been having a (mostly) wonderful time. We went on the Harbour Hopper tour (it's a tour of the city - 1/2 on land and 1/2 in the water) this morning. And then we spent the afternoon at Point Pleasant Park where the boys enjoyed throwing rocks in the ocean. One of their favourite pastimes lately.
I say MOSTLY wonderful because the crappy feelings keep sneaking up on me...just like in Florida. The reality of Ben's disability is so much more in my face when we're away from home. And this reality hits me when I'm not really expecting it. We're just going along and then I see Ben in his stroller while Daniel hops and jumps around and it breaks my heart.
But the point of my post is to admit something that I hate about myself. When I have these thoughts about Ben. These "poor Ben" or "poor me" thoughts, I have this awful way to make myself feel better. I think of children that I know (or know of) that are more disabled than Ben and think something along the lines of "well, at least he's not THAT disabled". I'm looking at that last sentence and I just hate to read it. I feel horrible. Is this a good way to deal with these thoughts? I have no idea. I really don't.
But it's how I deal. It's how I pick myself up and move on with the day. It's how I avoid dissolving into tears right there on the spot.
I don't even know if I should publish this post. I'm scared of what you all will think. I'm scared of your comments. Or that you may not come back here. Or that you might think that I'm referring to YOUR child. I will say that it's not usually any ONE child in particular...it's more like an odd mixture of a whole bunch of different children.
(P.S. I wrote this post about 3 days ago. I have read it every day since then trying to decide whether I should hit the "publish post" button. I'm still not sure if I should hit it, but I'm going to anyway. This blog has a few different purposes, but one of the main ones is to act as a diary for me as I deal with having a child with CP. And if this was a diary that no one read, I would publish this post. So that's what I'm doing.)
OK CaryAnne, It's alright I don't think anyone is going to hold that agaist you. I will admit I have thought the same thing before. So there you aren't alone! Probably if everyone is honest we have all thought those things even some of us with really sick kids. It can always be worse. One day there will come a time when you hardly think about what Ben can't do.
ReplyDeleteThis is your own little piece of cyberspace for your thoughts and your thoughts only...your blog. If your blog serves the same purpose as mine does, then this is where you come for YOUR therapy. Never hold back.
ReplyDeleteAnd no matter what, no matter how low something seems, there is always worse. So, yes, I too think the same thoughts from time to time. We have to. It's really all about counting your blessings.
I agree, be yourself. Not that I always follow my own advice, I sneak some stuff in only on other blogs that I think no one I actually know will see, for some extra therapy, and my main therapy is my outlet on the blog. You get to be you here.
ReplyDeleteYou are not alone. I think this same thought. I think about what some moms/babes have in store for them and assume it won't be so bad for us, and I am glad. I see adults in power chairs who use them like cars and live on Social Security in a shitty downtown apartment and feel certain that will not ever be my Hannah's life. See, I am as evil as you.
I am glad you didn't delete this. This honesty is exactly what makes the rest of us feel normal and not alone. I think some days we cope with our difficulties better than others. I am not above saying that other days, I feel the EXACT same way. I try to remind myself whatever road we are on, the days that things seem really hard, it could always be worse. There ARE other children/families who have way more challenges and that does make me think I need to pick myself up over what ever I am feelng bummed about. If thats not totally normal, well at least you have lots of company :)
ReplyDeleteThanks everyone. I really appreciate your very supportive comments.
ReplyDeleteThis is such an interesting and complex road that we're all on...and these feelings and emotions that I have just seem to overwhelm me somedays. I'm so grateful that I can write my true thoughts and feelings here.
You could be talking about my kid, and I still wouldn't hold it against you. I've done some reading, and that's actually a VERY healthy technique for staying happy. I do the same thing--we all do. That's how we stay sane.
ReplyDeleteCaryanne, you are very brave for saying out loud your true feelings, you all are. I have those very thoughts and more, sometimes I get so angry that Hailey will not have the quality of life that she deserves, and then I hate to admit that because I feel like if I say that out loud then that will mean that I am giving up hope. Because Hailey is my granddaughter I also get upset that my son and daughter in law will not have the quality of life that they too deserve. Mostly I think that there is no room for negativity,that will not help Hailey in any way. I try to always remain upbeat and focus more on what she can do instead of what she can not. I may not have control over her quality of life, but the one thing I can be sure she will have is plenty of love. I believe if we surround our children with love, they will be o.k.
ReplyDeletePlease don't feel guilty. I think everyone thinks this way with somethings. And to be honest this is many times how I cope with my sons autism as well. You're right, it isn't pretty but sometimes uhave to do whatever u can to make it through the day
ReplyDeleteThat my friend I think is human nature, I believe it happens to us all. It's like a coping mechanism. Normal!
ReplyDeleteI know we discussed this before and it is hard not to grieve for where they should be when we see their wombmate.