Still life with Ben

I've thought several times of letting this beast go. In many ways a beast is what it has become. It is a place where I have stored my joy and my fear and where I was able to express many moments of madness seen through eyes that knew silliness. But that resolve has been tested, and tested, and tested again. I keep hoping to find my place, to push through and allow this world that I have so much faith in to be my guide. The therapy, the schools, the friends and lack of friends, the work, good gracious it is a trying world we live in.
And then this.
Kiera didn't want to start school this year. She loved her teacher, liked some of the kids she was going back to, but didn't want to go back. It got worse after Christmas break and awful after spring break. Tears every morning begging me not to make her go, heartfelt pleas to not wake her up for school the next morning. Then several weeks ago my baby broke. She told me that she didn't have happy days any more, she didn't even have happy moments enough to string together into a happy day. She told me that most days she wished she could die and start her life over in heaven. She is seven years old.
Have you ever heard of special needs sibling survivor guilt. I hadn't. Not until five weeks ago and and our world change yet again to accommodate the extremely scary feelings of my sweet, scared little girl who doesn't know how to love and not like her brother who she shares a school with.
This is another thing that I don't know how to do. I do know that my little girl had a threshold and she crossed it and we are exceptionally lucky that we were talking so much and she told us how she was feeling. I do know that we can turn to others to learn how to cope with this new hurtle, because we are really freaking good at hurtles. I have no idea what the other side looks like and I am really tired of not knowing what the other side looks like. I am exhausted by searching for the good and the joyful in the challenge of it all. And so, so unbelievably sad that my little girl has such huge sad feelings at such a young age. The range of "what did we do wrong" that we could put ourselves through is unbelievable and entirely useless, we have done enough grieving to know this. So power on is what we will do, with all the support we can get.
This is the very short version of what we have been dealing with over the last several weeks and I considered not sharing it at all but then I thought, what if someone had prepared me for what Kiera is feeling? Could I have done some things differently? Could I have prepared her for what it is like to see your brother made fun of on the playground? Maybe not but could I have provided and outlet for those internalized feelings? Maybe.
It's all still life with Ben.

Loss

In the great big tiny world of special needs blogging, a child is gone. A mother has lead us through the weightless, unbearable world of her shocking goodbye and told us in her strength to never forget. To cherish our time, to hold her sons memory high, and to hopefully take advantage of her guidance and love entirely. I will. You and your beautiful son touched my heart.

The Difference

I was sitting there last night watching my kiddo's tumble around the living room and thought to myself, there is the difference. Right there in front of my eyes, they are living the difference right now. You see Kiera was cartwheeling in circles around Ben, while singing a song and laughing herself silly. Ben was singing the same song but every time he started laughing his muscles would crumple underneath him and he would turn into a puddle of silent giggles on the floor. He would catch his breath, stand up start singing again, start laughing again and turn into another happy boy puddle of silliness. Now all of this is good and fine, in our house. We see it every day, but I don't always SEE it for what it is. The difference between them. Why should I. They are a happy brother and sister, singing and laughing together and enjoying the silliness that is being children. But when it comes down to it, it is not just the difference between them. It is the difference between him and...everyone not him. Literally. No one is him. No one is exactly just like Ben and this year is beginning to tear at my heart.
Fourth grade. How did it even happen so fast? Ben transitioned to a new school building, new teacher, and new parapro (boo!) and did it so smoothly it was amazing. Kid just blows me away. Our biggest problem this year is probably that he is doing so well that when he doesn't do well I have to remind the team that they are not following the accommodations written into his IEP. It is a new thing to have to remind people of the level of brain damage that they are dealing with (expect a lot from this little dude but the IEP is in place for a reason folks). The social side of things is a different story. Up until now Ben has always counted on girls in his class to anchor him socially. Fourth grade girls don't seem to fill that role for Ben though. That leaves him a bit in no mans land. And he tries, goodness knows he tries. The kids in his class are not blatantly mean, just disconnected. And. It. Is. Breaking. My. Heart. I actually don't know what to do. I'm fairly disconnected from my own friends these days, how do I fix THIS? He came home with "Twins Day-Friday" written in his weekly planner. After a lot of conversation what it seems to come down to is that on Friday you get to dress up as your partner, and Ben doesn't have one. But he would like one, maybe he will get one on Thursday. What the hell kind of kid torture is this that he is trying to be so cheerful about? Because if I am crying over it, it can't be making him feel good on the inside!
So here I am again venting to the big space of out there because I am not sure that there are any perfect answers. Ben loves school, Kiera doesn't and she is my "typical" child. Wish us luck on twins day, we might just all go to school as a family dressed alike. Take that!  

The Risks

I have been dabbling in this blogging world for quite some time. Mostly I keep to myself and honestly it is because this blog is self serving. It is not a money maker (I have NO idea how to get that started or I might toss myself right under the bus), it is not a sample spreader (no idea how to get that one started either), it is just little old me getting some junk off of my chest (in fact now that I think about it I'm sucking!). Way back in the days of writing on paper, I quietly began typing this beast and didn't tell anyone I was even doing it until I accidentally left a comment without signing out of blogger. Oops! Cat was out of the bag, I figured that if strangers were reading what I was writing about Dave, he ought to know that I was writing it. So three or four people pop in here now and then, but I have taken care to minimize the risks I take with my blog over the years. Lately I have been reminded just why.
Angry folks. Angry, hurtful, hateful, judgemental, snide, bitchy, I-don't-want-you-as-my-friend folks. I get that when you put your thoughts on the internet for all to see you are opening yourself to judgement, I get that. I also think that just because I say my butt is big doesn't mean you get to say my butt is big bitches. I think that I (by I, I mean parents at large) should be able to question a moment of my parenting day without every troll out there calling me on it. I want to be able to agonize over decisions for my children, as we all do, voice it here and not have some wackadoo call me on my shit and tell me I'm lazy. Bite me. Lazy. Try traumatized. Now don't worry mom (just in case you are back again) this isn't all about me. This is just a little call for compassion. Rant away, complain, cry, bitch, moan, but dear people do find it in your hearts not to attack. We learned it in preschool.