Feeling a little introspective tonight so the following are a few thoughts that have been rolling around inside my head lately after reading other introspective blogs.
What I want you to know is that we're okay. Please don't tell me you're sorry. I don't know how to answer that. Thank you? It's okay? Well, I'm not thankful that this happened to our family. And it's not really okay. But we're okay. So maybe I should just change It's okay to We're okay. Or how about just not saying you're sorry for what happened to us. We'll start there.
What I want doctors to know is that I might seem like I think I have all the answers. I might seem like I think I know everything. I might seem like I know what I'm talking about and that I think I don't need you because I seem like I have it under control. But I really value your input. I really, really, really want the best for my son. And I'd like for you to want the best for my son, too. I'm sorry if it hurts your ego if I question or disagree with your suggestions but that doesn't mean I don't want your suggestions.
What I also want doctors to know is that parents of children with special needs aren't being unrealistic in their expectations of wanting more for their children. I think some doctors think we should throw in the towel because our hopes are too high. But they are mistaken. There is nobody that knows better than us what our kids cannot do. There is no need for doctors to remind us or reiterate our realities because we deal with them every single day. That is precisely why we want more.
What I want friends to know is that I love laughing and joking and acting like things never changed. Because a lot of me hasn't changed. I love getting together with friends over dinner and laughing until I have tears in my eyes and my cheeks hurt. And I love being treated like things never changed. Like nothing ever happened. I don't want to be defined by that. But something did happen and things are slightly different. So I may cancel plans on you because Christian was up all night or cranky in the morning and I just can't get it together enough to drag him out to somewhere I know he'll be miserable. Sometimes I just don't have the strength or sanity in me to listen to crying for a twenty minute car ride. So, yes, I probably will cancel on days like those. My life revolves around the moods of my children and that's just the way it is.
What I want you to know is that there is a level of insecurity that comes with our story. It didn't come from birth, it's a strange beast that not everyone gets. Hell, I don't get it a lot of the time, but I'm trying to. And it can be very lonely in this kind-of-like-that-but-not-really-like-that creature called brain injury. It's difficult. And sometimes I don't know where we fit in.
What I want you to know is that we are still trying to figure out our ever changing relationship with God. It's a journey and it's our journey. And just like any other relationship there are good times and bad. Pushing us one way or the other will not do anything for us because a journey cannot be forced by anyone but God. It's really the true test of faith and devotion - where we are right now - and we're trying to figure it out. It's not up for discussion, just so you know, unless you want to be uplifting and empowering. Faith shouldn't be about bullying or coercion. It doesn't mean we are bad Christians. It doesn't mean we don't have faith. It means that some days are harder than others. And we're learning how to find hope and faith in those days when we're feeling a little forsaken.
What I want you to know is that Christian is in there. He's listening. He can hear you. And he can see you. He responds in his own way and you have to know him to know this. So don't underestimate him.
What I want therapists to know is not to pigeon hole children into one category. Try everything! These kids will surprise you if you let them. Don't be afraid. Dive in.
What I want you to know is that as much as I'd like to do all of this by myself, I do need help. And not just for a little while. It's not temporary. And it is necessary for my own sanity. I'm not as strong as you think, but I'm definitely not weak. I'm somewhere in the space between. And you would be just as strong if you had to be. Yes, you would.
March for Science
6 hours ago