Thursday, July 31, 2008


Today was beautiful in the AM, rainy in the afternoon. But a good day for me.

Kath had PT this AM with Sue and she had to work on going up and then DOWN the stairs. Up is no problem--the going down backwards . . .that is a struggle. She screamed as Sue walked her limbs down the stairs. Then when she got down, she turned around (after a couple of sips from her bottle) and started to climb right back up! Sue asked if she wanted to go back up, she nodded her emphatic yes and Sue reminded her that if she went up, she also need to go down BACKWARDS. She said ok. So up she bounded. She stopped before the top (wet/shampooed rug stopped us from using the top step)and asked for help to turn around. She struggled and cried some, but she worked through it several more times. She was amazing. She also worked on stepping on a sound mat with both feet.I tried to help her lift her right foot onto the sound pads and she was very tight. In the afternoon Roger had to wake her up for speech and OT and he said she did well. I picked Nick up from camp, drove him to the dentist, he needs his wisdom teeth out too! Then he and I had dinner at Houlihans and shopped for new cleats for his frisbee tournament this weekend in MA. It was great spending one-on-one time with him. No interruptions. When we came home Rog and I took Bucca and the girls for a walk.

It was a good day.

Roger said Kath was a devil today, hitting, biting and being a . . .devil. He was very relieved when I came home. I think I just need little breaks so my brain has some recoup time. And of course it is good to be able to focus on the boys for a little bit before they head back to college. I end up feeling guilty because I ask the same questions and seem as though I am not listening, but I am distracted sometimes. I wonder why . . . .:-)

Alex also had dance class today, which she loved!

Still waiting to hear on financial aid stuff for Nick, hopefully when that is set I will be able to sleep. I was up until 2AM, when Roger was just getting up for his route, then up at 5 cleaning pee and poop from Lucy. I went back to sleep at 6:30 and stayed asleep until 8. So, maybe I will sleep good tonight!? We'll see. ;) Long live coffee!!!

More soon!

Wednesday, July 30, 2008

Retreat and then nonsense

This past weekend was the New England Retreat for CHASA-Children who have Hemiplagia and Strokes. It was wonderful. We arrived Friday night too late to swim or do much of anything other than walk around and go to sleep. But we had hippotherapy in the AM way out in East Bern at EBC Therapy Center (a little plug for them--the website is listed in my fav sites on the left side of this page. You can see Kath's horse Mark and Alex's Babe who she rides; Flint who she wants to ride and Pony Girl who is her dream horse). Then it was hard to get everybody focused and rolling out the door, but we left around the time I wanted to be there so that meant we had to eat dinner on the road. We decided to stop at Lee Outlets to get some yummy/ healthy stuff Rog could eat and so he and Alex could get sneakers. Alex did, he did not. Kath had her second fall of the day there, she scraped her face on the pavement, earlier she fell into the kitchen chair. Nice! Bruises and scrapes in time to meet new people. Luckily many deal will the same thing.

Saturday AM we met the group for breakfast and everybody spoke t one another and were so very friendly and open, it was amazing. Lots of sharing of ideas and experiences. Even if no one had the same exact experience, we could all relate. We even got the name of an eye doctor in Boston who is excellent with children. We feel our own doctor visit left much to be desired considering how often Kath falls and runs into things. ("Just give her lots of hugs and keep doing whatever you are doing, she is adapting well.")

Alex played with other kids and didn't seem to notice anything was different until, Sunday AM when she asked why one boy had a 'cast' on his foot. She didn't seem to notice many of the kids had some brace of one kind or another on or walked with a limp or didn't use a hand. There was one other boy who was Kath's age. She was very shy this weekend and pretty much to kept to us and walking off by herself --ha! we were right behind her.

It was great for Roger to be able to talk to other dad's and make connections. I think it really opened him up to Kath and some of what she is experiencing. I know I felt awed by what other moms have dealt with and found strength in being able to have others understand how much work goes into making our kids 'fine.' We all expressed hearing from others how they seem to be fine and what are we worried about. :-)

Saturday we also played around the lake, played miniture golf and went in the pool. Kath actually just picked up my golf ball and put it in the hole for me, she must know how terrible I am. The place, Sturbridge Host Hotel was excellent and beautiful. We didn't feel we had enough time for everything. We took the girls down to the lake both nights to look at the stars. The second night they were dipping into the lake and enjoying the surreal aspect of the lights and live band from the restaurant and the stars. It was great.

Sunday we headed over to Sturbridge Village. The girls loved walked around. Kath just loved walking, Alex enjoyed going into the homes and checking them out. She was never without a map trying to tell us where to go. We even took a horsedrawn wagon ride around part of the village. We would like to go back (they have a deal where you can go back within 10 days for free) since we didn't get to see everything and it started to thunderstorm on us when we were at the furtherest point from our car. Memories of Chris being struck flashed into my mind and I just wanted to get out of there.

It was great. I made friends with people who even if I do not see them again until next year's retreat, I know would listen and be there for me if I emailed them. Amazing group of people. There were kids who had all sorts of issues in addition to the hemiplagia--heart problems, lungs that were 'shredded' on the ECMO machine, premies, and so.

Then when we came back home the nonsense began. The basement flooded AGAIN. This time it was really bad and Rogr spent all day Monday working it and is still working it and being stubborn. Wasted our whole day, didn't get to take the kids to the Sciene Museum. I am working like mad to get the boys' finances set for school-- what a headache. I need to make money with my writing. Oy.

Kath has had and continues to have a busy week. She had PT and speech Tuesday but she also had an evaluation from a teacher for the visually impaired. As Kath is more mobile she is doing more damage to herself because she does not see very well and walks into things, trips over objects and falls. Scary and sad to watch. She also maybe struggling with doing certain tasks, like puzzles and shape sorting and other identification types activities because she doesn't see correctly. Kath qualifies for 2x a week but it will be up to us if we can handle that much more in the services area. We are also trying to keep Alex in dance and possibly sign them both up in some time of activity class. Roger took Alex to the free movie and lunch this week. They saw Mr Magorium's whatever. :-) They enjoyed their time.

Alex helped me weed the garden Tuesday afternoon while Kath and Daddy napped. We worked on it for about 3 1/2 hours. My hand was like a claw after that, still feels stiff but the garden looks great and seems to be sighing and soaking up that extra space and growing better already. Today the girls and I headed out to Home Depot, Dollar Store, Target and the library. (I had the dentist his AM and my mouth was numb for hours!)We picked out some pretty perenials, some stones for the garden path and a variety of other items. When we left the strip mall and arrived at the library I realized that I had not fastened Kath's safety buckles! I had to lift her over 2 seven foot poles to get her in and said that when I got around to Alex's side I would buckle her. But when I helped Alex I pinched her leg in her buckle. I felt so bad for Al, I forgot about poor Kath's buckle. So when we got to the library and I went to take her out of her seat, I was confused for a second, what? Then I realized what happened. I said, "Thank you God for watching over my baby and keeping her safe!" Alex turned around and said, "Thank you grandpa for keeping Kath safe."

Alex was talking this morning about how much she misses grandpa. She just talks about him out of nowhere, seemingly nowhere. I said,
"What if we plant a tree in honor of grandpa and then we will have the tree to remind us of grandpa?" She loved the idea and now we are working on what type of tree would be good for grandpa.

As for my writing. I was the goals moderator on my writing forum and that was about as much as I did this month with writing. Although today while the girls slept in Home Depot's parking lot I did read over my story. Amazingly enough . . .I still like it. Usually I would hate it by this point or think it was terrible. But I really like it. I met a 16 year-old at the retreat who I asked if he would help me by providing me with some ideas of what teens who are stroke survivors and have CP go through, so I could write more accurately. He also told me he loved the book Stuck in Neutral. It is about a boy who has CP. I have a copy on request at the libe.

Lately I have been feeling pretty tired and blah again. Dr Orsi thinks I might suffer from depression. I think it has to do with never finishing a project. All day I start to clean, start to organize, start to do wash, start to do a million things and I have to stop to drop off, pick up, therapy, therapy, therapy, therapy, breakfast, lunch, dinner, clean up after Lucy, take Bucca out, foodshop, change diapers and so on. I don't get to complete my thoughts. I don't get to complete my ideas/projects. Ideally I should be able to get things done when the girls and Rog go to sleep. But now I am obssessing over financial aid, Nick being out, Chris being away, money, how much therapy is saturation? Am I giving Alex enough time and attention? And pure exhaustion at the end of the day. (Especially as I keep them up later to enjoy the summer nights.)

So completing the weeding Tuesday was a goal. Started and finished. I did it. Amazing how I slept better and got up feeling more chipper. So my goal is to bring the focus in. Get the things done that give me a feeling of some control and completion.

Then maybe I won't forget to buckle Kath in.

Maybe if I can reagin brain function a little at a time over the next month, then maybe when school begins I will be able to breathe and teach and be okay. All sounds good before tomorrow starts and dropping off, picking up, therapies, naps and so on start all over again. :-)

Wednesday, July 23, 2008

Miss you Grandpa

I don't want to hear that summer is almost over. I am not even half way through.

Tough month. Sick for half. By the time I went for the xray, nothing showed up that was irregular--I had been on meds for a week and was breathing better. Just about done with the meds now.

Great Grandpa Steiger died on July 16th. He was in a lot of pain at the end so it was a blessing for him, but it still leaves me feeling like there is a hole in the world. I have never known the world without him here. Somewhere. Even if I didn't see him, I knew he was here. Alex crept up with me to the casket and prayed to him, constantly telling us she misses him. Kath reached over while I was holding her and touched his arm, blew him a kiss and signed 'shhh' (for sleeping). After the funeral-beautiful ceremony with TAPS played by a real live bugler, and two Honor Guards folding and presenting the flag to my aunt-- Alex asked us in the limo if grandpa was in the casket. I said yes and she just started crying. Sad for everyone especially my Dad and Aunt Eye. I will miss his good heart. Alex feels a little better knowing he watching out for her now.

I stayed down with Aunt Eileen with the girls and tried to spend time, after Roger and the boys returned home. We went to Bayard Cutting Arboratum and Fire Island Lighthouse. We plan on getting back down and beaching with Aunt Eye.

Before this Grandpa Bob was up from Monday to Thursday and the girls (and us) had a great time hanging out with him.

Roger worked a National Board Retreat the previous week and was in the Adirondicks for a CASDA retreat when grandpa passed away.

Nick had a car accident on his first day of work. While trying to avoid a speeding car on one of our terrible gravel roads he lost control and flipped his father's car over into a ditch. He had no injuries, other than a couple of scratches. He went to camp (he is Sports Director) and scraped his hands while sliding on gravel ( imbedded gravel into his palms). That was a worse injury. He has tested as still having Lyme's, too.

Chris has been helping Roger with the route so we have been able to see him a bit. He is now considering a motorcycle. I will never sleep again at this rate. He is considering NYU for grad school.

My writing has suffered drastically this month. I did the three reviews for Resource Links and that was really great. I will let you know if I am published. But I have not worked on my writing at all. Pretty pathetic. But I ahve been the goals moderator for the writing forum again.

I was doing great with losing weight--3 pounds a week--but the stress of the last week has not been kind. Oh, well. Start over.

Alex has shown more interest in reading, she actually carries around a copy of The Neverending Story. And then she 'reads' it to me during the day. She HATED this book when I tried to read it to her. She actually hid the book so I wouldn't read it! Now she 'reads' it to me and says it's her fav! She is also working on writing and storytelling much more. We are reading the Narnia series.

Kath showed a different side to her visual issues while on LI. In the funeral home there was a sunroof in the lady's room. Kath was fine until she saw the trees blowing through the roof then suddenly she gripped onto the sink countertop and looked at me with such fear in her eyes I grabbed her and held her tight. She seemed to have vertigo or something. The next day she walked to me when she noticed it but she looked like someone on a tightrope, trying not to look up and trying to keep her eyes focused on me. Then at the beach, on the boardwalk, she wanted to walk so badly, but once I put her down, she froze. She looked down, saw the beach grass between the wooden slats and couldn't move, she became lead and locked up. She was going to be evaluated by a teacher for the visually impared last week, now it is rescheduled for next week.

This week we have had OT, PT and speech. Today Roger, the girls and I met up with Kristen, one of my students from the first year I taught. We saw Wallace and Gromitt for our free movie then went to Johnny Rockets. Tomorrow is dance class for Alex, PT and speech for Kath. Possible libe trip afterward. Friday is hippotherapy then the ride out to Sturbridge to the New England Retreat for kids and families of hemiplagia. I am so looking foward to this!

Hope everyone is doing well. Excuse the errors.

Thursday, July 3, 2008

Summer . . .ahhh.

I really love teaching. I love the start of the school year. The anticipation of what the year will unfold to be. I love the smell of my classroom. I love my students/kids.

But I feel as though I barely made it to this summer. I love summer break. It is my time to reenergize.

As if to prove I barely made it to the end of the school year . . .I went to the doctor this week. I have whopping cough, a sinus infection and I need to get a chest xray to make sure I don't have pnemonia. My knee is floating (what??). I had a pelvic shift and my kneecap decided to start sliding around due to decrease of muscle of my quad. So, when I say, I can't take much more, maybe you understand.

Actually. . . despite all this, I am feeling better. I don't have to worry about school stuff, lesson planning and grading. I don't have to worry about missing out on some major event of Kath's or Alex's. I am coughing up a lung when I try to put the last of my garden in, or when I try to sing Kath's nite-nite songs, but slowly I can feel some of my brains coming back to roost. I am still not sleeping right and Dr Orsi said this is a concern. He mentioned how the Dept. of Defense has done studies and they know that if you deprive a man of sleep for three days you can kill him. So . . .I best get some rest or he may put me on something (no thanks). I fall asleep ok but then I wake up all night, every hour or two, sometimes for the coughing, sometimes because Lucy needs to pee on the stairs on the way to the door, sometimes because I want to make sure Nick is in, sometimes because I know Roger is out working already. Then during the day it is a continual flow of taking care of business. At 10:30 tonight I washed my floors. Why? Because they needed it, I have no other time where NO ONE will step on them, and they were so gross I couldn't put them off for another second.

I am telling you this because . . .mom of a child who has a disability who may be reading this. . .you need to know that some months are going to be crazy. Some days are insane. Sometimes you don't get 'things done' and you just need to reprioritize and figure out what is important. Easier said than done. Obviously, or I wouldn't be so sick. But I am learning. Erma Bombeck wrote that she wished she played more and didn't worry about the house. That is hard when three different therapist come into my house each week, two of them twice a week, and I know that they see the same things cluttering week after week. And crud in the corners. And mystery stains on the rugs.

But . . .I decided that when Kath goes down for a nap, if I can get Alex to snuggle, we all sleep (however that doesn't happen often enough). I sat on the kitchen floor Sunday with Kath when she decided to 'talk'-- she rambled and rambled-very expressively. She doesn't wait for food to be cooked. It took me 2 hours to make a pot of coffee (AHHH) and breakfast that morning, but it meant so much. She strung sounds together, she told a story. I took Alex to the movies Wed (Crossgates has Free Family Movies at 10 AM for the summer). I should have been going for my chest xray, but a promise is a promise. (I was going to go afterward but I needed to get home to take Kath off Roger's hands so he could go back to the dentist to get his crown fixed.)

Everyday I have to remind myself to stop and not think of it as 'lowering my expectations' as to what I will get done, but rather slowing the pace of the world in which my children live. So when the boys come home and they sit to talk after dinner, I sit. The dishes will get done sometime.

I am not in the same place I was in February. A mom wrote to the list serve and she was beside herself with guilt and fear-she just got the diagnosis of CP. As much as I still feel blown away at times, and fearful and guilt ridden, I see how I have made a snail's progress towards getting back to inhaling (except not too deeply because the whooping starts up). I don't know if Roger feels as though the stroke was my fault, I don't know that he realizes it fully, but one day he mentioned how we could never have another child because the same thing could happen. I guess it is. But as angry as I feel for him tossing such a statement at me (and probably forgetting it), he is right. We don't know why the O2 shut off and caused her stroke, but it was the placenta and the placenta is my territory . . . And since he doesn't talk to much, I jump to the worst ideas and thoughts.

Anyway. I am working on the healing aspect. The getting healthy, working on losing weight (journaling about it), trying to regain control of my little spot here. Everyday is therapy and working on Kath, not just when Sue, Liz or Laurie are here. Not just when we drive out to East Berne to hippotherapy. Each day. Every activity.

And I have three other children.

My writing has taken a backburner again, but I think I am rebounding. I am goals moderator for the writers' forum for this month again. I am reviewing three books for a teachers and librarians resource publication. I am writing here.

Now after all the me stuff let me give some highlights of the week.

Saturday- We went to a co-worker/friend of Roger's house who has a daughter Alex's age for the little girl's birthday party. Alex was thrilled to play with someone her own age. Saturday night Chris and I watched Robin Hood (that is our Chris and mom time, every Saturday during BBC Robin Hood Season).

Sunday Chris took Alex to see Wall-ee, they loved it!

Monday-OT with Laurie. Kath is working on getting to know Laurie, so Laurie is doing playing and encouraging activities to build her trust and bond with Kath. Alex is playing 'library.' She made library cards and set books about the house for me to 'buy' with my card, as long as I returned them (have to do that to some REAL library materials!).

Tuesday Kath had PT with Sue and did great work. Took a nap and woke up sneezing, running nose and miserable. She signed and tried to say "I want. . . " and mimiced Liz on several words. Hazah!

Wed-day Kath woke up at. .. gee was it 3:30? Miserable. Day was cranky. Alex and I went to the movies and lunch at Johny Rockets.

Thursday I cancelled PT and speech to take Kath to the doctor. Wed-day night she was writhing around, crying, pulling her ear and miserable. At the doctor's--no sign of anything other than a running nose. (I wonder if they think I make this up 'Here she comes again-she must need to talk to an adult!')Alex and Roger went back to her little friend's house and played while Roger had a meeting. Chris and Abbi came home tonight, Abbi made cookies with Alex while I put Kath to sleep.

We didn't even realize tomorrow is the 4th of July. eish. So, in honor of the day . . I might finally have time to get my xray. We might also drive out to Lee Outlets to get Kath new shoes and sandals since her old ones are getting too small and the outlet has them for half what I would pay at a local store!

Well, good night. Tired, maybe I will sleep through the night. :-) Gotta love summer nights.

*** This was written but not posted on July 3