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. :-)

No comments: