Just telling me now!

Deep breath and take the next step forward. With one of those deep breaths I walked into yet another IEP meeting today, at least 12 of them under my belt, and this being the one I have been least prepared for, because my papers are in a pile and smell like smoke and have soot stains on them. As I listened to my sons teachers talk about how smart he is and how engaging I smiled, then the zinged me with how much of the actual content of the lessons he is missing because of his frequent trips to the bathroom! Come on people, it's March! You think if this was an issue we'd be on it by now....this is the danger of working with special education staff and not having the carry over with the general education teachers, where does it break down? Obliviously there isn't a medical connection to this soooo, yes, a functional behavior. Then the BCBA who has known him forever has to look at his documents to see that there is no FBA in his plan, like I pointed out many times before~there should be! So onto the next "issue" or "problem" if you will, and with a deep breath I continue to move forward!

February 24, 2013

Just like with everything else, the TV remote isn't working now....what is on the list today... (And yeah, blah blah blah you should focus on the positive, not the negative!). Oh, I know, the fact that the toilet almost overflowed right after Mike left for work, Jackson filling it with too much @&$-! Hmm, oh yeah I know, how many times has Riley asked this afternoon if we were safe, if the doors were locked, if we were going to get robbed, if I heard voices, people walking....etc. Well, that doesn't sound like much, but it is. After a weekend where my little girl was in the hospital anyway. But if she doesn't fall asleep soon, ill scream! My pillow is bad, I can't get comfortable, I can't fall asleep, etc. ugh, my patience has been wearing thin. Ok a bowl of fritos and I'm back ... In what world is that sentence okay? Anything, really anything happens in this house. It's a "shields up" environment here, waiting for the next thing, for the other shoe to drop!

February 22, 2013

Sitting and waiting those if the medicine will react. It's 5:07 and Riley and I are at Metrowest Medical Center in Framingham. I brought her here to the ER last night because she threw up yesterday morning at the hotel and we thought she might be dehydrated. After 2 phone calls to the pediatrician, they concurred and told us to go to the ER to get fluids. Fast forward to almost 12 hours from when I left the house last night and here we sit, waiting to see if the Bactrim is going to work, scared to have to go through what we did last night, all over again. I hate antibiotics and the fact that they "don't work" - it annoys and scares me at the same time. Not a hive in sight yet, one hour after an oral dosage. Fingers and toes crossed and scared too that even if she doesn't react tonight before we leave the hospital, that she might when we get home, I hope not. It's hard right now to place my trust in a higher power, with the fire and now this. It seems like we can't get out from under, it sucks! I do want so badly to move forward but we keep getting stuck!

February 21, 2013

Heading home in the car from Lenox, MA after 3 days of a "vacation" with my sister and her family. Relaxed except for my 11 year old with her head on my shoulder, asleep, sick. We met in Springfield at the Basketball Hall of Fame on Tuesday. We had lunch at Plan B Burger restaurant. We laughed and talked and ate. We went to the museum for the rest of the visit. Lots to do and see. The kids really liked it I think. Onto Lenox and the Yankee Inn. We checked in, did some exploring, swimming and ate pizza together for dinner. We stayed up playing Catch Phrase with the kids and had some beverages. Next morning the big boys went skiing and after breakfast we went to the Berkshire Museum. It was a great place with a little something for everyone in the crowd, dinosaurs, Greek statues. Indian jewelry, boxes and tape and the aquarium. A brief exit for lunch at the Highland Diner in Pittsfield and we went back to the museum for more exploring, complete with turtles doing shenanigans and a bully turtle trying to escape his blue bucket, using his muscles again and again, perseverance embodied in a turtle. I know how you feel turtle but how do you keep trying? The Eagles "we may lose and we may win, but we will never be here again...." Live each day and don't get ahead of yourself or stay behind mulling over decisions and choices. Message for our kids. Last night we all went out to dinner together, to The Dakota. We had a nice time, everyone together. Afterwards we hung out and called it a night , to wake up and say goodbye to the Casavants. My Riley, not feeling very well and come to find out, having a stomach bug. Here we are, traveling home. A deep breath again to move on with this day, and the next one, one at a time.

January 22, 2013

And what exactly do I do now? It's 9:50pm and I'm exhausted. Make lunches is still on the list along with a million other things. 1. Get rid of all the clothes and shoes, and stuff that we don't need in this temporary house 2. Record all gifts and send out thank-you cards? Or feel guilt and don't do it 3. Research how to build a house 4. Wonder where all those friends of mine who were here the first few days have gone.... 5. Finishing making sure they listed every last item that I owned in my house that is covered in soot and smoke and soon will be cleared out of every last thing I ever owned, chose or cherished 6. Laundry, it's always there 7. Figure out how not to scald myself tomorrow in the shower with only scalding hot water! 8. Worry about taking too many days off from school with a principal that sucks 9. Cry Okay so not a million but I'm tired of thinking and writing so it's 9 for tonight, that'll have to do.

January 8, 2013

Coffee spills on the floor a s he shuffles by and Mike yells, it's par for the course around here and day 2 back to school after our house fire 11 days ago. We are all in a strange environment, trying to get used to new stuff and its like playing wipeout sometimes the physical obstacles we have to get over, not to mention the emotional ones. So coffee on the floor, papers and pencils, it will have to be that way, for a while I'm afraid.

December 31, 2012

It's the eve of a new year, and four days since my world fell apart with the fire at our home. It's the end of our third night in a hotel, same clothes, smoke smell is everywhere. It's the green leaves on the wall and the popcorn ceiling and the green and white curtains that I have been sleeplessly staring at for three nights, it's my worst nightmare and I have to find a way to keep hoping, keep moving forward. We pick up the keys in about an hour to our new house, our temporary dwelling. It's so sad and yet there is some hope at the same time, a community and friends have surrounded us in their loving embrace. It is overwhelming and it's still sad. It's the eve of a new year and it can only get better from here.

Beatitudes

Thinking about how I just move now from the kitchen to the living room, from one electronic device to another, to check for the news of the day in my FB world ~ to make sure things are not changing too rapidly without my knowledge.  I still think that the world is paying attention to me and my worries and my challenges, no matter what is really the case.  I know that it isn't but it somehow makes me feel better just to check.  Why do I want people to know what is going on with us?  Probably because it seems so terribly horrible and sad that I cannot carry its weight alone.  Maybe because it is impossible to think about someone else's family going through this.  Maybe I just still really need support and help and not matter how much I say I don't the "It's going to be okay" and the "You are such a strong family, you'll get through this"...and the beatitudes, the quotes and the sayings like "If God brings you to it, he'll get you through it" and "One day at a time" and "What does not kill us makes us stronger".  No matter how much they make me crazy when I hear them, they really do seem to help, maybe it is because people: friends, family, neighbors, friends of friends, community members and strangers; are the ones who are saying all this stuff.

No words....

I sit down under the monster yet again tonight, a stack of papers to my left, the dishwasher on and swishing, the TV muted but companionship.  My eyes blurry as I try not to worry about the headache I have. Having just spent the last 3 days in NY in a parallel universe, one where everything good happens, I'm having a hard time being back home, back to my own reality.  Having said that, it's so very true, how lucky we are, it's amazingly true.  We have one another and our health (fingers crossed) and a warm home, insurance and now hope too.  We aren't battling cancer, our children don't have rare diseases, our parents aren't dying and we aren't struggling just to get out of bed each morning.  We're the lucky ones.  Our house fire makes us the lucky ones?  It seems to be so, however I am still feeling like all I want to do is go home, to my home, and I feel selfish after meeting all these people this weekend who may not live long in their homes, or their children may not know home from a hospital room.  Yet my grief is real, to me.  It's hard I suppose, how to feel and what to say, on a daily basis I feel that way.  Sometimes it's "Lucky us, we survived and we'll get our home back" and other times it seems to hurt so bad that I just want to close my eyes and wish it all, all of it, away.
So what then, what does it take to go on? I don't really know sometimes what it is that keeps my physical body doing all the things it needs to be doing, while my mind is elsewhere.  Ah, to live maybe in that parallel universe of hope and compassion?  Is that maybe where it all makes sense?