Tuesday, December 30, 2008


Just an FYI. I believe I wrote about this awhile ago and since I am too lazy to go back and check--and my comp is soooo slow I don't want to waste my time--let me just say that this message you are getting--if it is in email format . . . I am not sending it to you in an email. I am writing on my blog and I have a clever little mechanism set up so that you receive notification. You may still check out the blog site--the pictures are old--but they are still cute. :-)

I am curious just who is out there receiving the notification and if you are all receiving the blog as an email. Could you take a moment to email me and tell me if you are receiving this email and how it shows up? (vsgaboury@aol.com)

Keep in mind you may directly read the blog at http://vsstuff.blogspot.com.

More later! Happy New Year!

Friday, December 26, 2008

Welcome to Holland--poem

Seems the link isn't working so here is a reprint of the poem.

Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Tuesday, December 23, 2008


Our experience without electricity for 5 days has been a pretty big turning point for me. I said that although we were without electricity, we were not without power. I did not feel powerless during this time, I did not feel I could not take care of my family. I felt that I planned as well as I could. I had plenty of water to start with--10 gallons. I had plenty of firewood. I was able to cook on top of my stove. And I have Roger. I was able to think without the interruption and buzz of all things electrical.

It was hard to be in the dark so early in the day and it was hard that it took so long for the light to register in my living room in the morning. The girls went to sleep early . . .and woke up early! :-) We played. We sat and read. We cuddled. One night it was so cold we all slept in the living room. We used the water from our flooded basement to flush toilets. But there was the thinking time.

We learned a lot about our neighbors. Two of our neighbors stayed, one went to a hotel and we all checked on each other each day to see if anyone needed anything. One had a stove and generator, the other bought a generator after the freezing night. Another neighbor had to leave and go to a hotel because they had no way of heating their house and the temperature dropped considerably. It was a bonding experience. I am forever grateful for all of their friendship. I miss talking to them all every day. :-)

I learned about priorities. Heat/shelter. Water. Food. The rest is gravy. I am trying to keep it all in perspective through this crazy time. It is so easy to be overwhelmed by expectations of gift giving and such. But I found that we have a different focus.

We cut our gift giving drastically, due to financial issues. No one besides the kids is getting a store gift. It is just the way it goes. Even though I took a picture this summer for our Christmas card--I haven't gotten them made up. I can't sit down and write a summery letter to everyone. This year has been so tumultuous I can't possibly do it justice and I don't have the desire/energy to sugar coat it. So this is it.

Don't get me wrong--good things happened, but lots of crazy things did too. Katharina's diagnosis. Roger's roll over accident. Our entire backyard had to be dug up for a new leitchfield. Nick's roll over accident. Katharina's therapies. Alex diagnosed with a speech problem. Money issues. Roger working a second job. Granpa (not a typo-that's what I called him) Steiger passing away. My ex-brother-in-law murdered. Lucy dying. And yesterday on Christmas Roger's grandfather (Grand Pepe) passed away.

How does one write some uplifting Christmas letter with all that.

But our blessings are huge. But they are not fluffy. They are not for the casual reader/friend to share. They are defining us. They are strengthening our core and priorities.

The oxygen came back on. We have a beautiful daughter. After her year evaluation this week, it shows progress but still highlights the depth and breadth of work we need to continue to provide. More later.

Roger and Nick, though the crashes were totals and though Roger's accident seriously hurt us financially, not to mention the six staples to his head, both 'walked' away from what could have been devastating accidents.

We are working towards reducing and ridding ourselves of our debt.

Granpa is no longer in pain, but I miss him and I cannot watch a military funeral in a show or movie without sobbing. I miss Lucy everyday. I still look for her and expect that she will put her head on my lap. I dream of her walking down the hallway and wake up sad that she isn't there. I wish beyond belief we had gotten to see Grand Pepe one more time and we will miss his smile and good soul immeasurably.

Our year.

We found strength because we were torn down. We work hard to erase our debt that has been made more painful with this economy. Two kids in college and two with therapies and preschool, have made things even tighter. We work hard to give Kath a normal life while we watch her struggle to pick up a spoon with her claw grip then celebrate her going up and down the two laundry room steps by herself.

Roger and I use a team approach to handling our lives. I am in charge of most of the decisions and day to day things while he works, works, works. We learned that if we don't hold onto one another during this, we will not be strong enough apart to keep standing. Leaning and swaying together has made us able to weather some of our troubled parts of the year.

Not to make this a more emotional writing . . .we are so thankful for all of you. You who have read this blog, called, emailed, prayed, stopped by, lent support. We may seem distant and distracted, but it is not because we don't care about what you are doing or how you are doing. It is just that we have been swaying and holding on, and some days, it takes all our strength to do that. And more.

We are one of the lucky ones. We have four wonderful kids. Chris is a senior at Bennington his year and the excitement of deciding what the next step will be is in our home. Nick is a sophomore who is enjoying his classes and his friends--and video games. Alex is 4 and has begun to love her friends at school, as well as her new Baby Alive who poops and pees (oh brother!). And Kath is right beside her hugging her baby in the crook of her stiff arm, laughing as she and Alex dance and sing in the living room, helping to make cookies (and eat them) and feeding Bucca too many dog treats.

We are good. We are even great. But to a casual reader I may sound like a complainer or exaggerator, but to those out there who are going through this or have, you can probably tap into this vein too easily and understand the angst mixed in with the joy. I try to get both sides across but sometimes I do feel bad--because of my poor writing ability --this may only come across as weighted and sad when the truth is more balanced most days.

So to all. Merry Christmas. Happy New Year. Happy Hanukkah. We celebrated the day with the kids and Abbi in the morning and then Aunt Eileen decided Christmas Eve to take Amtrak up. So we played with Baby Alive who never seems to hold it long enough for Alex to get the diaper off and the baby on the potty. Mrs. Goodbee is the house the boys bought for the girls that talks to them and is 2 feet tall. And Kath telling us she didn't want anymore presents. "Kath, do you want to open another present?" "NO!" The boys enjoying their gifts-Chris putting his new sheets, blanket and comforter on right away and Nick reading the books and pointing out the cool parts of traveling and bridges and watching The Dark Knight (waiting to get his game system back to play his new games). We ate homemade lasagna, tofurkey with dumplings, gravy, potatoes and carrots. Pumpkin pie and cookies were dessert. The pudding was soupy. :-)

We missed the family not with us. We enjoyed the family with us. We hope you did too.
Thanks or joining me for the year in reflection. We do not feel the powerlessness that we felt a year ago. We may have a long way to go, but we are at least starting to be able to grasp onto the sliding deck of this crazy ship we found ourselves on. We do not know what the destination is, but I have water, firewood and I know how to feed my family. And just like that poem I posted that Donna told me about a lifetime ago--we may not be going to Italy, but Holland is pretty nice too.


I have to go learn how to make some cloth diapers for Baby Alive before she eats and pees us out of house and home. Oh, and feed Kath before she eats all my crackers. :-)

See this site for the poem. If I did it right.


Wednesday, December 17, 2008


Today is the first day in 5 days that I woke up to having electricity. I learned A LOT. One lesson was that I will not spend as much of my children's waking hours on the computer. So I will write more about how we handled no electricity but found plenty of power during a difficult situation. And since today is also my birthday (not a plug, just a defining reflection for me)I find myself extremely reflective about my past year, my upcoming year and the way I spend my time.

So . . .more later. Hope everyone well and enjoying their own 'time.'


Sunday, November 30, 2008

Happy Thanksgiving and a side edit

Happy Thanksgiving all!

Edited: (This was written and not sent on Sat. Since then we lost Lucy, our dog of 16 and 1/2 years. She died early Sunday morning in her sleep. I do not wish to take away from Thanksiving or her memory so I will write about her at a later time, but I did want to mark the day and let you know.)

Although this year has been a wild year, we are very thankful for many, many things. We had the boys home for a turkey, mashed potatoes, sweet potato pie, green bean casserole, corn, gravy, bisquts, and a stuffing meal. Little homemade cheescakes, cookies and assorted not-so-good from a box desserts. I took shortcuts this year, no one seemed to mind that I didn’t make everything from scratch, it was a sanity move. The girls were delighted that their brothers were home and we all got to relax. And be.

Chris is back at school. The girls and I picked up Thursday and dropped him off yesterday, to the viewing of Christmas movies. We picked out a tree. This is the earliest we have ever chosen and gotten one. It seems like a good idea to get the tree and the decorations and start the season of joy and hope earlier this year. We seemed to need a little inspiration. :-) The boys didn’t balk at going so early, they just piled in and helped us chose one. Sadly, none of our usual haunts were open yet so we had to get our tree at Home Depot. It is a pretty little tree that fits nicely in our dining room area. I decided I wanted it here so we could truly enjoy it for the next month, where we could all see and make it part of our thoughts each day. When it is in the playroom we seem to only enjoy it when we purposefully sit in there and on Christmas. So . . . we have begun.

Alex is thrilled. She shows her baby dolls it—reaching up high so they can see it. Kath plays with some of the decorations that have begun to come up the stairs and she calls Santa “Ho-Ho.” Nick picked out the tree because it has blue tinted branches—it is our first of this kind and it is beautiful with a very perfect shape. Aunt Eileen sent us up with some presents so we have a few presents already under it.

Yesterday, Alex started to open one of her presents. I should have known something was up when she kept asking me which one was hers. She must have had some kind of idea that what she was doing was not exactly right because she didn’t just tear the paper off-she peaked in and said, “It has something to do with princesses!” I looked over and said, “Al . . .we don’t open those until Christmas.” She burst out in tears saying, “I keep forgetting!” Then she sobbed for 5 minutes. I passed her over to Chris and she cried on him too. Poor kid. So much to learn when you are 4.

The girls also played with the manger. Sorry to anyone who feels this was disrespectful. I kind of figured that Jesus would rather kids play with him than approach him with a hands off, eyes only type philosophy. There were Little People in the manger taking roles in the nativity scene. It was cute.

Anyway, we are starting to decorate and make our home and our lives a bit more peaceful and thoughtful. As with most everybody, this year we are unsure how many gifts will be under the tree, but we will not allow this season to pass without reflecting on what it truly means to be in the moment, to be at peace with how one is living one’s life (regardless of religion or beliefs).

This is the time of the year that we will have the first annual evaluation of Katharina’s Early Intervention team. I think we have begun to find our way through this and we seem to have found a little trail to follow. It isn’t as scary as it was (Lord, knows I am not trying to ask for further tests or anything!) a year ago. It is in a different realm now. Things are starting to make a bit more sense with how Kath learns and participates in life and how we can help her. How we can encourage what she knows and does. God, I hope I didn't just jinx myself!

She is playing by herself now. She loves the Little People that she got for her birthday and that Alex’s speech therapist gave her. She likes to put bags—pocket books or apple bags—on her arms and walk around the house saying “Goodbye.” She loves to empty out containers—food, magnets, anything. She loves books; she sits quietly and reads them, turning the pages and absorbing the pictures. She loves anything to do with Alex. And now Chris and Nick. And of course poor Bucca and us. “Poor” Bucca went through a box of dog treats in a couple of days—usually takes two weeks, because little Miss Kath kept feeding her. They are best of pals now. She also likes to do the little air pump that blows up balloons—a couple of weeks ago she couldn’t hold one end and pump with the other, but she is continually building up muscles.

So, Chris is busy working in his thesis and preparing for his girlfriend to come home from Scotland. We are very glad that she is no longer planning on going to India (our thoughts and prayers go to the people of Mumbia). Nick is getting ready to return back to school tomorrow; hoping he misses the snow. Alex will go through brother withdrawal—just as we will. I did get to watch a couple of movies with Chris (Pirates III and Elizabethtown).

Back to out decorating. Going to put on Otmar Leibert 'Poets and Angels' and enjoy the non-monetary aspect of the holiday while the getting is good.

Friday, November 14, 2008

Today Miss Katharina turned 2.

Today is an amazing day. More than it was even a year ago.

Two years ago I had the worst labor of my 4. The scariest. Even now when I think back, it frightens me. My blood pressure dropped to 64-47 at one point and I felt so comfortable with the floating away I was doing, until I realized I wasn't ready to completely float and that a new little one counted on me to help her through what were were doing. They gave me oxygen and then Katharina nearly hanged herself on the cord because she proceeded so quickly down the birth canal. Then she arrive face up and silent.

Apparently as difficult as that day was. It was not even her hardest and it wasn't until last August that I began to even think something else had happened.

But at her one year exam I said, "Something is not right." Luckily I have a great doctor who said, "I am not worried, but I trust my parents." So, with Kath not even pulling herself up, truly reaching for objects, and a few other worries, we were evaluated by Early Intervention. (My apologies for you who are weary of this story--but this is my way of dealing.) After her evaluation, we knew she qualified. She began PT in January--first week. Sue (her PT) said that we seemed to have gotten to Kath just in time--she had been starting to 'give up.' For the first few weeks Kath did not reach for toys--we had to pick her hands up and bring them to the toys. We had to move her muscles through the motions, physically. But she did start to show memory permanence, for when Sue bought a garage with doors, Kath remembered from the previous session that cars go under the door. That was a fantastic sign, since we had no real idea what kind of brain damage she might have had. When she went for the MRI and the diagnosis was given of 'in utero stroke with Cerebral Palsy, possible language and visual issues'--I keyed in on the words I could--CP.

In the past year I have found that as bad as any form of CP is, Kath is pretty lucky. Yes, she runs like a drunken sailor-often bouncing off walls and yes, she struggles to use her right hand without it causing her more grief, but she does have use. She is not clenched and even when she is tight, I can usually massage her muscles out of it. She has mild CP.

It is the stroke part--the part I couldn't consider--that after all is an old person's ailment--that I have now had to reckon with. I have this idea that it is like some fault line that erupted and glitched her wiring. You could see her trying to dig her way out of her silence with her own version of sound repetition, sign language and incredible eye contact. You can see her watch Alex or another person/child do something and then when she gets a chance she is mimicking the action to the best of her ability. Today, when we were at the Pre-K I checked out for Alex, she watched other kids running pell-nell. At first she stayed wrapped around my hip. But I could see her eyes and I knew that she was eventually going to kick out (I think I still remember the FIRST time she did that!) and move me to put her down. She ran like them. Wild and crazy. She, however, has the balance of a drunken sailor, so watching her run takes courage. She falls A LOT. Not just down--but she can't stop herself at all so it is like watching a car stall and crash into a tree. EVERY TIME. The teachers of the program were painfully grimacing and flinching their oohing and ahhing as I seemingly just stood there watching my daughter face plant. Until I finally had no more courage and I picked her up and wouldn't ALLOW her to do it again.

The thing with stroke survivors is that--as most people know from adults--they have to do something over and over and over and over again. It hurts to watch. It hurts to have people think I am callous about the face plants my miracle does. But if I ever want her to be able to push through and succeed, then I have to learn to back up and let her fall. Don't worry, I did put her down to run again, I just needed to slow my heart and take a couple of inhales to stop my panic.

That is one reason it is easier to avoid people. I can allow Kath to try and work through things at home without people who really have no idea--putting in their unwarranted advise. But, I digress.

Kath has had an amazing year. She is a beautiful, smart, funny, energetic, stubborn little girl. It has be an incredible year. I never want to live it over again though. Thank you very much. It was one of the most draining years I had. The months surrounding Nick's accident were tough, but this was a whole year of hanging by my fingernails.

I feel as though my brain being wrapped in cotton has been a good thing. I don't think I could have dealt with it all, full force.

So today. The three of us went to the Round Church to check out the Pre-K program. Kath and I watched as Alex participated. Alex was quiet and shy-but had no real fear of being there or of interacting with anyone. She said she wants to go back, so that is a good sign. Although I asked her later in the day about her favorite part and she said she couldn't remember what they did in school at all. Looks like THAT starts all the way back in Pre-k. Alex also had speech therapy afterward and did well. She works VERY hard to do well by Kate. :-)

After that the girls and I decided to run to ToysRUs. We got Kath the Little People Garage--funny that was the first toy her PT brought over and now 10 months later she can move it, play with it and enjoy it. We had previously picked up some new Little People at Kohls. Alex got a sibling gift of the Little People Airplane-she has not let it out of her hands since it came out of the box. The girls played so long tonight I didn't realize how late it was! Daddy made dinner--vegetarian Shepherd's Pie. He also made an Angel Food cake for her candles. Aunt Eileen and Pepe called to sing (Aunt Eileen ALWAYS sings to whomever's b-day it is-big or little:)). Stacey, Kath's special ed therapist sent her an e-card and many of you sent her cards--which she loved and carried around for days.

More later. Tired for now. Take care.

Thursday, November 6, 2008

God doesn't give you . . .

If I hear that one more time . . . .

The kids are doing great. The boys came home to vote (which sounds much easier than it entailed . . .). The girls both have therapies going now so that we are going 6 out of 7 days a week. Alex gets speech therapy now 2x a week. So Monday is OT and special ed for Kath. Tuesday is Alex's speech and Kath's PT. Wed is Kath's speech and once a month the teacher for the visually impaired. Thursday is Kath's PT. Friday is Alex's speech. Sat is Alex's dance (not a therapy) and Kath's hippotherapy.

Grades are due this week so we are both working hard to get it all done.

On the first day/night of snow Roger slid off the road while doing his papers. He called me at 5:30AM to ask me to call AAA. I had let it lapse. So, at 5:30 I was trying to transfer money and have AAA accept payment and send a truck. While I was doing all that the owner of the home he was in front of(one of his customers) came out and called his son-in-law down the street and at the same time a snowplow drove by and all of them got the car out. He has a little car body damage but that was it, he is fine. But a couple of days later we noticed he was leaking oil (might have been from before) and while he was doing the route the exhaust made a racket, so we put the car in the shop this week. The exhaust was an easy fix. But of course the oil issue is massive and will cost close to $1,000. Sigh. Because of this crazy economy a couple--yes more than one-a person and a place (a program Roger work with this summer) owes us money. My district cut the literary magazine I advise-- even though I have more students involved than ever before, that means a cut in my year end pay. So, it seems we are considering me going back to work full-time in September and putting both girls in school. Alex in public kindergarten program and Kath in a special school. Homeschooling ideas are not going to work. We just need to tread water until next Sept. Alex will be checking out a preschool program tomorrow. I want her to be eased into the schooling mode of life. :-) If she (and I)likes it she will go 3 days a week and one of Kath's therapist is trying to move her schedule around to accomodate us.

We think we must have killed someone pretty important in a previous life, since we no sooner feel we are coming out from under and we are walloped. Push that rock up the hill, get run over by rock, regroup, fetch rock, push rock up the hill and repeat countless times.

On a slightly different note, we were able to borrow special glasses from Kath's teacher for the visually impaired. With these goggles we were able to see how Kath MIGHT be seeing. The goggles showed a deficit in her span of vision. For example, she may not be able to see to the full right and to the full left and a spot in the middle may be missing as well. This helps one to understand how difficult walking and scanning the room may be--there isn't a continuous picture of an object--it is interupted. It breaks my heart to think this maybe how she sees. Reading will be quite the chore, and I imagine that driving will be out of the question, when she gets older. We had each of her therapists try them on so they could all see how she MAY be seeing. It amazed them all that although it is highly likely this is all she sees, that she does as well as she does.

I will send this now because I have held it in draft since 11/6 and today is 11/13. Tomorrow is Kath's birthday and I want something positive. :-) Good night.

Tuesday, October 21, 2008

My bcakwards girl

So Alex is 4. Yup. She enjoys dressing herself. Usually it is not a big deal since we have no social life. However, every now and then . . . .For example, when we went pumpkin picking she came down the stairs fully dressed -- in layers. She knew she needed layers so that as she became hot, she could peel off her clothes.

What she was confused about was the order of the clothes.

She put her fur-lined leopard print velvet-y shirt on first, which meant it was under everything else. Then a mushroom decorated long sleeve shirt. Then her flowered pink shirt. Then on top of it all was her tank-top t-shirt. Her arms were out a little from her body and she looked a bit like a puffer fish would look if a puffer fish wore layers of clothes for pumpkin picking.

Tomorrow is Alex's CSE meeting up at school and then my meeting with Kath's teacher for the visually impaired. Today we had speech and PT. Discussed was the idea of having Kath attend a preschool program since she is such a social learner, but I still want my baby to be my baby and be home with me. I am selfish, I know. I feel as though I could do the best with her, but I do want her to socialize. I am not ready for her to be away from me for too long, I ache when I have to go to school, any more and I would go crazy.

I also had to bring my car in the shop and it needed a new water pump-other than the time lost driving back and forth-they did give me a borrowed car--it was still under warranty. Whew. Tomorrow I drive down to JFK and pick up Chris from his Scotland trip.

More later.

Sunday, October 12, 2008

To the ones I notify by message

I am working on how to send you an automatic email telling you I updated the blog. I see that what it currently does is send you a copy of the text I wrote. I feel like you miss out. :-) Plus I will be updating pics soon and well, you really will miss out. So, feel free to use the email as just a reminder to check the blog and not how you actually read the blog. :-) Enjoy!

Head butting a baby cow

Or at least I don't THINK the cow head butted Kath. Naw, she did it to the cow. Then said, "Owwww!"

We took the girls to Kristy's Barn and went apple picking and pumpkin picking. Alex loved to pick the apples--the higher up the better they were--and Kath loved to take bites out of them--to make sure they were sweet enough. Quite the side show we are. Then we picked pumpkins. That was fun--trying to lift each and every one. I suppose you only know the true value of a pumpkin if you can lift it and its stem doesn't 'bite' you. Coaxing them into walking to the far reaches of the farm, easily reached by hay wagon ride by other parents, we made our kids walk. Alex picked out her favorite bright trees and Kath tripped over every other (getting better) pot hole in the grass. Finally we reached the petting zoo.

At first Alex was a little perturbed by being so close--as in right next to-a calf. But when I reminded her that she rides animals 5 times bigger--and with bigger teeth--she relaxed. Kath had no qualms about going right up to them. As they lay on the ground--probably overfed by kids all day, Kath walked right up them and dumped her whole cup of food in front of the first animal she met. Ah, forgot to explain what we were doing and how to divide up the food so it would last through the whole little paddock. Oh, well. She didn't care that there wasn't anything in her cup. She had a cup and the poor calves didn't know there wasn't anything in it. Might explain why she eventually was head butted, but I will get to that. We saw goslings, ducklings, turkeys, pigmy goats, hens and roosters. We fed (Alex was better at dispersing her fare and getting me to fork over more money for more cups) them all. We also tried to avoid being pecked by terrified turkeys strange little boys chased and cornered. That might explain why THEY (the turkeys, not the boys)took cups of food out of unsuspecting children's hands and then practically wrestled the cups to the ground. This happened to Alex, who looked at me like she was going to cry. She was so amazed at the rudeness of the turkey she stood there stunned and looked at me. A father came over and gave her food for her cup and she snapped out of it. :-D Kath however looked at this and was upset, she started to cry until I made a joke about the turkey being like Bucca when she steals a toy/sneaker/you name it.

We had a lot of fun there. Roger waited outside the fence for us. Not sure if he was hoping to rest (that didn't happen-he was halfway up the fence watching the crazy boys chase the crazy turkeys closer to us) or if he didn't want to try to step gingerly through the assorted animal poop. :-)

As we were leaving the paddock the cows finally decided to get up and walk around. They were bigger than I thought. The girls had to watch out because the cows didn't. Not where they were trodding or where they were pooping. Then one little adorable calf who was chest high on me must have been smelling the food on girls. She nuzzled Alex first, then nuzzled Kath. Then they banged heads.

I am the kind of mother who has belly laughed as Chris puked in my car all the way home from the mall. I laugh when people bang their heads, walk into things, do assorted painful things to themselves. I am a horrible person. I actually feel bad for them, don't get me wrong, but I can't help but see how funny it would look/how funny it looks.

Kath said, "Owwwww" in a bit of an annoyed voice. I started laughing! Then I yelled over to Roger (cuz I am classy too), "Did you see her head butt the cow??" He couldn't because we were behind the ducklings' fence. You will have to take my word for it. It was funny. And the cow walked a little crooked afterward. Kath walked straighter. :-D

Then we walked all the way back, bought our cider donuts and paid for our stuff. The wagon ride was next. And it was free! The girls loved sitting (ahhh) and looking around the whole farm on our hay ride. Alex and I decided we would start a farm in the next few years and have LOTS of animals. I told her she needed to help me take care of the ones we had to get into practice.

The day was great. The boys were missing from it or it would have been perfect. The weather was beautiful. Warm. Blue, blue sky. The leaves look like they were lit from within with the intense reds, oranges, yellows and greens. It was great.

I just wish I had gotten a picture of Kath and the calf bumping heads. :-D

Saturday, October 11, 2008

"I kissed a girl"

Yup. Got my attention too when my 4 year-old began singing it tonight at dinner, incredibly clearly for a girl who is being considered for speech therapy. I laughed so much, I turned red and she then told me I shouldn't laugh or make her laugh while she was eating. She could choke, ya know. I asked her where she heard that song. On your radio mom. I do have to confess I really like that song, it is sung by Katy Perry. It is a great moving song. I just didn't think it showed. I must have turned it up or sang it myself. :-D Roger just got up and poured himself some more Mountain Dew and tried to keep a straight face as I was bent in half, snorting my food through my nose. Just wasn't what I expected my 4 year-old to be singing at the table. Would have LOVED for the boys to be home. Actually it would have been much more enjoyable--in a mean way--to have a homophobic person hearing it. It was just so fun.

Alex did struggle today at yoga/riding lessons, though. As you know, we have hippotherapy on Saturdays. Yoga is a yoga/healing touch class for Katharina that Alex attends. Mostly because there is no where else for her to go, but she thinks it is her class too and has a blast with Britta. But during the session she tried to tell us something and I could not understand it no matter how many times she repeated it. (I often have to 'interpret' for her since her bigger ideas and vocab get tangled up between her brain and her tongue.) I felt so bad and finally she just broke down crying and curled up in my arms. She was so frustrated. I never did figure it out. We have our CSE meeting next week. Other than that, if you could have seen her eyes so lit up while dancing and riding, she had a great day!

Kath did fantastic too. She has been trying to talk more and more and mimicing what we say. She is growing in leaps and bounds cognitively too. She is amazing. Simply amazing.

Got to see Chris for about 15 minutes today. We began our day by going to dance class, then driving the hour to yoga/healing touch/hippotherapy/lessons. Then we drove two hours to Bennington. We dropped off Chris' passport, new license and a birthday card. We got there just when he had to leave for a film screening for one of his classes. So, the girls and I started to drive back home and ended up in Walmart getting costumes for Halloween. Kath wanted absolutly NOTHING (she kept hitting it away) with the cute witch's costume I chose for her. I thought she would be easy. ha. She ended up agreeing with Tinker Bell. It is a little difficult to shop with someone who doesn't talk and obviously has no idea why on earth we are buying costumes anyway. Alexandra has known since the day she was born that she wanted to be a princess. So she is Cinderella. Then we drove the hour ride back home. Both girls also got slippers and nice warm pjs. We will begin the fireplace tomorrow (I stained the wood behind the fireplace so it is drying still--two years ago it must not have had enough time to dry and it kinda melted in drips, but now it looks great, if I don't say so myself!) and the bedrooms get a little chilly, especially Kath's since we close her bedroom door. With Roger up and about at 1:30AM, we don't want HER up and about at 1:30AM too.

Both girls tried on their costumes while I finished making dinner. So cute to see Kath dressed up , fluttering around with fairy wings and Alex being the Queen Cinderella (or maybe even the evil step-mother Queen)telling Kath what to do. :-) Ah, it's only the beginning . . .

Tomorrow we will be heading out to apple pick and pumpkin pick. I'll take pics!


Thursday, October 9, 2008

When an almost 2 year-old is quiet . . .it's too late.

So . . .I was working on the computer yesterday when I suddenly realized that Kath was quiet. Uh-oh. Too quiet. I ran into the dining room and there she was. A vision of blue. She had opened the blue finger paint top (her Physical Therapist and Occupational Therapist would be proud), found a paint brush and then proceeded to paint the chair cushion (I think she was just trying to move it--with the paint brush, it was on the floor), the potty seat, the chair as well as herself. She was so proud of herself. After I saw her face when I began to reprimand her, I stopped, congratulated her and then cleaned her up so we could get our errands done.

However, I got distracted again. She handled me a bag of marshmellows. So, I opened it and handed her and Alex one. Thanked her for bringing it TO me and then turned around. A few minutes later I realized the whole bag was gone--without the tie, still opened. I didn't have far to look. Kath was sitting around the corner, on the floor, working on hand/eye coordination (ha!!) taking marshmellows out of the bag and licking them. One at a time.

Ah. What a pip.

So, the pumpkin farm was nice. It was terribly expensive though considering I was only there for about 2 hours and the free pumpkin was a really small one. The place is beautiful, it had farm animals and a huge wheel we were able to pretend we were hamsters and roll down a big stretch of farm on. But as I said very expensive--8 dollars for the each of us. Ahh.

I am almost considering starting my own homeschooling group but I don't know anyone who does it. But the group I met showed me how difficult it will be to find people I can fit with. I am so awkward! :-)

Alex is feeling better. She had a second bout with the cold but seems to be healing. The boys are great. Chris turned 21 on Saturday. We drove up and took him, Nick (who came home for the weekend and was at Bennington Friday night), Chris' friend Sean and the girls out to celebrate his day. We then bought a cake, pretended there were candles (his dorm doesn't allow real ones), and sang to him. Can't believe he is 21. Wow. This is harder for me to handle than me turning 40 was. I drove Nick back up to Rochester on Monday. He and I spent Sunday shopping for a new cell phone and sneakers. It was good to have some reconnect time. I miss them both.

I have off today, tomorrow and Monday. Roger had off today, goes to school tomorrow and has off on Monday. So glad. I am so tired again. I actually took a 3 hour nap. Eish. (One night last weekend I slept for 12 hours.) I did get my hair done. Haven't done that since before summer! Feels great! Tonight the girls and I decorated for Halloween. That was hilarious since most of the stuff freaked them both out at first, but then Kath was carrying around, in the crook of her right arm, the Skeleton Man, as if he were her baby doll. Although Alex helped me hang up a spider web she still took wide steps around an oversized spider on the floor.

Katharina is trying to mimic words--she is repeating many, many things. Alex said '13', Kath said '13.' Other words too but if you are not right there to hear it said previously, you wouldn't catch it. But the fact that she is trying to repeat is so amazing! She usually will copy if you ask her, now she is doing it on her own.

Haven't gotten back into writing, but I am hoping tonight. I am working on writing up and sending pictures in for a book a woman on the listerserve is making about kids who had strokes to help new parents get through. I have three book reviews to write for the Canadian Library/Teachers publication and then grading and such.

Hope everyone is great. It is so wonderful to see someone else reads this, though now am nervous about my editing. . . .:-)

Wednesday, October 1, 2008

Nothing clever comes to mind--as a title

Everyone is doing well. We are busily back to school, therapies and living. Chris turns 21 this Saturday. How on earth did that happen? Somehow turning 40 didn't mess with my head-maybe too much worrying with Kath??--but NOW having a 21 year-old!! Give me a chair, I need to sit. Nick is coming home this weekend (yeah!!!) and we are heading out to Benny to watch Chris'soccer game and take him out to dinner.

Alex is slowly getting over her cold and Kath is being amazing. I am homeschooling Alex, but it doesn't really feel like it--most of what we do is fun and sprinkled with some 'book work.' Guess that is why I wanted her homeschooled (one reason) we get to play and learn! We are meeting up with a homeschool group at a local farm tomorrow. Kath is uber-aware and into everything. She gets forks for dinner and we have ALL the forks on the table. She 'reads' books. She hops on one foot---then the other! She sings. She runs everwhere. She is amazing--they ALL are.

Roger is doing well, trying to fight off The Cold and stay focused on his teaching.He still amazes me with his strength --to be able to work a second job--every day. Now if Congress passed a package that would give the taxpayers 700 Billion Dollars!!! He could write. I could concentrate and write. Ugh. sigh.

I am having a wonderful year although they cut the funding to the literary magazine I advise. I wasn't going to tell my students, but I did today. I am still going to advise it. I have 14 kids interested this year . . .how can I not??

As I visited and made goals for this month on my writers'forum, I realized AGAIN how I have allowed myself to get distracted. Don't get me wrong--I know I have good reason, but . . .there is more than one fellow writer, who is now published, who when I first joined the forum, they were plodding through like I was. Now they are published. I am still struggling through my story. sigh.

I did just a great two weeks of reading, which is a good sign (for me) that my brain is on the upswing (what a picture THAT is!). I read three of the Twilight series books by Stephenie Meyers in the last week and a half. At the same time as progress reports were due and well, everything else. It has been so great to be able to slide into the storyworld and escape for a little bit.

Off to go do something--read? grade? write?


Sunday, September 28, 2008

This week

Alex was evaluated on Tuesday at Village Preschool. I didn't realize that there would be a psych evaluation too, but whew! that went well. :-) Alex showed that she has some oral motor issues with a forward pushing tongue. She works very hard to get her ideas across, but her IQ is very high. She works very hard to make sure we understand her. All this energy we feel, as fortunately so did they, that with all the energy she takes to get her point across it could inhibit her from a foward progression, and it could slow her down socially. We also don't want to just compare her to other kids her age--not when she is so amazing, it feels like we would be holding her back. They suggest she receives therapy for 6 months. They loved her. Even though she had a cold, she was adorable. She is also someone who works hard at pleasing everyone. She knew that Kath had issues. When asked why Kath has therapists come to the house, she answered, "Stroke, in utero." Immediately. I never discussed this with her, she picked it up. She didn't know what that meant, but she is like a little magpie, collecting info.

We went to Conn yesterday to attend a birthday party for the sibling of one the hemi kids we met at the Sturbridge retreat. The girls had a blast. We played at their house and also at a kid play place. Alex had fun running around with other kids (carrying her baby everywhere) and Kath loved trying herself on all sorts of climbing aparatus.

Things here are going well. I have been obsessed with reading the Twilight Series. I have devoured three of the books in one week--they are all about 500+ pages. Since I don't sleep much they are good company. It would be GREAT if my insomnia-like issues would allow me to clean and correct papers, but I am lazy.

Nick is coming home this week. I can't wait to see him; it has been since August. Chris turns 21 this Sat. Wow. How did I get to be this old?

My writing is stagnant but I feel like when I am done absorbing Twilight I might be able to think/write.

I apologize for this being a short and boring post. I want to go read. :-)

Wednesday, September 24, 2008

Subscription! Followers!

I found this new button. Look to the left side of this page. I think if you click on it you can subscribe and receive notification of when I post. Be a follower too! It is nice to know I am not talking to myself (haha, yes, I am). If you are having problems, email me and I will add you onto a different list myself.

More later on Alexs eval. Girls are both still sick and now I have a scratchy throat.

Monday, September 22, 2008

I have been a horrible blogger--this one is long

I tend to be the kind of person who shuts down when my world goes crazy. Then afterward I blab to everyone all my revelations. I think I am at one of my revelation times.

Katharina has been showing remarkable progress. She is running--albiet a bit lopsided and a bit scary to watch--but running. I didn't think we would get here until December. If ever. She is recognizing pictures and objects and following simple directions. Considering there isn't much speech it has been difficult to know what she knows cognitively. As she sits on the floor and opens books and makes sounds while pointing to the pictures, I think--whew, maybe . . .she might be okay. Visually she seems to be speeding up a bit with her mental/visual tracking of objects. When she bounces a superball and it bounces into a bag, she can keep her eyes on it and follow it to find it--couldn't do that a couple of weeks ago. She points to purple things and says, pu-pl. However, she points to most other colors and says that too. White is also a fav. Ah, well. Alex painted Kath's right hand nails and Kath will show anyone her 'pretty hand' when asked. She watches Alex dance at ballet and then when we come home, she tries to swirl.

She makes incredible eye contact and she nods her head emphatically; you feel as though she may be trapped by her brain, but she is chiseling her way out. And she knows she will make it out.

She has a cold today, but that did not stop her from running around all day after waking up before 5AM to a sodden bed. Her nose is running a little slower than she is, but that has not stopped her from running to the pantry to feed Bucca as many cookies as she can before I stop her.

Alex is also sick, actually sicker. She has her speech evaluation tomorrow and I am hoping she feels amazingly better tomorrow. She woke me up this morning around 4AM to tell me (by breathing in my face) that she s-i-c-k. Thanks Al. She woke me a couple of days ago and I asked her for 5 more minutes (she gets quite the kick out of that). She said she had two things to tell me. Ok, baby, tell me in 5 minutes. After several attempts to wake me up I finally woke up and said, "Ok, honey. What are your two things?"

"Now I have 5." Then she proceeded to say them really fast, probably afraid I'd fall asleep sitting up. "1-See those trees? (pointing out the window) Don't they look like fairies? 2- I keep wishing for a magic wand, but I never get it. Why? 3- What should I be for Halloween? 4-What is your favorite star? Mine is a magic star so you can make a wish. 5-Why are there only two packages of banana oatmeal in a box (variety flavors)?" Need to be on my toes for this one! Alex drew a picture of me being tired. I have big dark brown circles under my eyes and my hair is wild. Hmmm. (baha!)I told you I have sleep issues!

She continues to impress me with her kindness and patience with Katharina. Kath will pull her hair, take her dolls, grab her cups and steal my lap. Alex will yell, but never hit Kath for yanking tufts of hair; she may pull the dolls out of Kath's hands, but never strikes her; Alex lets her drink from her cup and in turn drinks from her sister's; and Alex nudges her sister over so they both have room on my lap.

As for my brain. I think it is getting better. I came very close to going to the doctor, but decided to try vitamins, positive intentions and letting things go. I gave myself one week to feel something. I did. I have also lost about 11 pounds this summer. The letting go is not easy, but it is liberating, except the first thing I let go is the housework. So the house is a mess, but slowly I am feeling better. Robin made a comment today that I seemed 'brighter.' I feel brighter, more like myself.

It was last August when I began to have the nagging feelings of worry for Kath. I first thought we allowed her to get injured in the bouncey bounce we had for the boys' party. I thought her brain was damaged from the bouncey bounce and that it was my fault. Then I thought she had a brain tumor. She wouldn't play. I have never seen a child not play. She would sit and watch, but not explore. She didn't seem to even want to move. She stopped nursing.

Then once the early intervention began she started to spark. She is doing amazing things. I still worry that the stroke was my fault, but I can't do anything about it now. I sometimes pray it was my fault-- if that will mean she will not be susceptible to another one, as some of the kids are. We work with her everyday, with or without scheduled therapists, but she has therapy 2X on Monday, 2X on Tuesday, 2X on Thursday, sometimes 1X on Friday, and 1X on Saturday. This does not count the soial worker, doctor appointments and any therapy make-ups. Tomorrow I have to call Boston's Children's Hospital back to schedule an appointment for her there- we want to have her eyes and their cognitive connections evaluated.

The last year has been a rollercoaster and I know from the listserve that the ride ain't over yet, but what an amazing ride. I have met incredible people including my own family and friends who have shown a new dimension. Other parents from the retreat this summer-wow, what amazing people.

My husband gets up every morning between 1:30-2:30 AM every morning to work a second job for us. EVERY morning he does this before his real job (teaching) and on weekends. He never complains about it; I whine about the dishes. My sons and my daughter have shown the wonderful strengths of their hearts and transferred it out to new people they have met. Robin, Maddy, Janine and Karen have helped us keep our sanity as I have vented or just melted. My aunt and dad have helped us when we didn't know where else to turn. My friends at school ask and then listen. My wonderful administrators continue to allow me to job share so I can be home every other day. The great people on the listserve are voices in the dark helping me navigate these scary waters. The writer's forum is being so patient and not kicking me out even though I am way behind in crits. My awesome students, past and present, keep my eyes on the big picture. Lori and Donna, I know are just a phone call away, even if I don't speak to them for weeks/months. And the rest of our families who call and check in on us.

This past year has rocked me to my core. Rocked my faith. Forced me learn how to breathe again. Between Kath's diagnosis, Roger's accident, Nick's accidents, Chris' abroad experiences, I am on a different path than I was. I am a different path.

My marriage is stronger and more solid in ways I never imagined a year ago. I have faith, maybe not in any particulr religion, but in a God and the people I live here with. I look at the world a little differently and I prioritize my world differently than I did a year ago.

I hold my kids, husband and friends in true hugs of the heart. I breathe in the sunny days (still don't like the dark ones, but hey, I didn't say I was perfect!) and sit on the floor and play with the girls and Bucca. I read my own books, not just about Kath's stroke. I shut off the TV and talk to my Rog. I text Nick. I email Chris; I drive to see him play soccer whenever he lets me. I sing in the car.

I have a pack of blessings. Yes, my house is a complete disaster-we started projects like the breaking up of the sidewalk; the lawnmower tried to eat a rock and bit itself so our grass is reaching for the sky (yes, we still live here); there is always a pile of wash on the chair in the living room; Lucy doesn't always make it out in time; our basement likes the wet look. It is embarrassing that we have therapists come into our messy home, but . . . but! the oxygen turned back on and Kath lets me rock her and sing to her. She lets me touch and stroke her right arm and leg now. She says, "Momma. I uv ew." Kinda. Mostly she points to her eye, her heart and smiles big at me. Roger healed, Nick walked away from his accidents--even after a tramatic brain injury. Chris is going to Scotland in a couple of weeks to visit his girlfriend Abbi and I am sure this travel experience will be much more delightful than parts of Nicaragua. Alex snuggles and holds my hand and tells me I am so funny.

Life is great. That is my current revelation. And I think it is just as important to mark the great revelations as it is to tell of the tough swings.

Saturday, September 6, 2008


Can you believe it is raining again? Or that we are back in school already? Both are true.

Roger and I returned to school this week. For myself, I will say--unrested and not ready. Don't get me wrong I love my job, my students, my life, but things at home are so busy and on-task that I wonder how I will be able to accompish my goals.

One goal is to work on muddling through the crazy roller coaster emotions one goes through when dealing with a child who 'has issues.' And no, I don't mean the boys! Just kidding guys. Seriously, some days I feel like I have my head and heart wrapped around Kath's diagnosis and what our job is - to help her reach her full potentional. Then other days I don't want to move, I am energy-less and deflated, and I just want to cry. Please understand (anyone who is thinking I am a weirdo) that I KNOW how good we have it. The oxygen came back on for Katharina! The stroke didn't destroy more brain matter! She is a pip! What I go through has nothing to do with what is really going on in our lives. It seems to be just hormonal or mental. Who knows? But I started taking vitamins, forcing myself to exercise, and trying positive healing/thinking. It has helped that as things rachet up, we also have help from the sidelines to ease some of the craziness.

Kath has been doing tremendous things. She walked past the TV while Alex was watching, I think, Curious George and said, 'Ta-da!' after she heard it spoken. Then after she saw my reaction, she proceeded to say it all day. Then one night we were working on the yard (one of the rainless days) and I had just reached the deck and turned around in time to see Kath sliding down the slide. She had never climbed up by herself before (she had trouble getting her right leg in front of herself). Now she is pretty good at getting up and sliding down, although she sometimes thinks she can stand and serve a sermon at the top, but her balance is still that of a drunken sailor (no offense) so that doesn't end without me running faster than I did in high school.

She still does not really speak clearly. I can understand some of her words, but if you weren't around her like I am, you wouldn't understand her. She had two hippotherapy sessions this week and she also had healing touch and yoga today. She has such an immediate reaction to Britta when she begins, it would make a believer out of all of you. Even if Britta is behind her (and Kath cannot see well peripherally), Kath becomes aggitated and aware very quickly. But after that, once Britta is able to rake through her for a bit, she settles and actually relaxes. You can actually see it. I am so glad my friend Doris introduced me to this. It is amazing.

Alex is doing great although I was ready to flip out yesterday when I became obssessively worried and almost rushed her to the ER. I noticed that she was garbling her words and having a very difficult time talking. Since we don't know why Kath had her stroke, I began checking Alex for any sign of paralisis. Then I asked her to open her mouth and found she had a huge canker sore (again). This girl! She had tried to carry her sister the other day and they both toppled-Kath into Alex's lip. Alex 'caught' her--that's Alex's story. My story is that Alex broke Kath's fall . . . with her own face. Anyway, Alex is notorious for putting her (dirty) fingers into her mouth-so I think she infected her cut innerlip. Poor chick. Friday we dropped off the paperwork for her to be evaluated by a speech therapist, so she is already hard enough to understand and now she talks like she has marbles in her mouth. But I am trying to give her tea-bags and that actually seems to be helping. Did you ever hear of that? Putting a teabag on the canker sore?

Alex and I also began preschool homeschool this week and are having a blast. She also started dance class today. Boys are good and enjoying school. We are going to go visit Chris tomorrow. Roger is good too. A good man.

I am going to go snag some writing time (another goal), so, enjoy!

Saturday, August 23, 2008

Finally SUN!

Hello everyone.

Things here are going well. We are drying out from all that rain--not as bad as Florida with Tropical Storm Fay, but still flooding here. Roger has been working on a wood shack and playset for the girls. He is making a structure over some of our wood that will also support a climbing wall and ladder for the Climbing Sisters. Next year will be a swingset. Chris helped with it before he went back to school--his senior year!!!

The boys are back in school. We moved Chris in on Sunday. He is training this week to be a dorm leader--that is not the right word, I am blanking out. I brought Nick up on Wed. and he is training to be a delion, he will be a mentor/cheerleader for the freshmen on his floor.

Alex has been getting funnier and wiser. She is very humorous in her approach to viewing life. I will give samples later. :-) Kath has continued to show amazing strength of spririt and heart. She worked on Friday and Saturday with the hippotherapy. She rode Mark on Friday and today she and Alex both rode Cody. Kath also had healing touch and yoga. I see such a great deal going on with her. Alex has even remarked how much more Kath is understanding and following directions. She washes herself, she gets napkins for dinner (she usually only gets one--brings it to the table and then either gets bored or forgets and that is the only napkin for the night, but it's a start!), she gets her sneakers/sandals when we say we have to go bye-bye. She tells us (when asked) if she went to the bathroom. She is still not speaking but she makes herself known-especially if she dislikes what you did or did not do. She continues to push herself physically and we continue to as well with her therapies.

This week she did not have speech since Liz was on vacation, and she became a bit frustarted with Laurie (OT) and Sue (PT) but in totally normal kid-way. It was great to watch, on the one hand, because it was so NORMAL. It was so TYPICAL of her actual age.

Kath was evaluated (did I tell you this already?? Too tired to double check, sorry) by a teacher for the visually impaired. She qualified. The teacher who evalued her said that she could only do a once a month evaluation with her, so Kath will have a special ed teacher once a week. I will also have a social worker who will help me keep everything straight--no pressure Stacy!

We are a little (ok a lot) disappointed that our insurance told Liz (hippotherapy) that they cover the hippotherapy for unlimited visits for 120 days. We will be up to that in the first week of September. After that we will have to pay on our own until the next year starts. So we are going to try to fit in as many days we can before school starts. And then decide what we can do. EBC Therapy is working very hard to keep us going, they love the girls! :-) Who doesn't??

Well, I am off for now. My computer keys are sticking--hmmm, wonder why ALEX! :-) PBSkids.org Girl. Good night.

Saturday, August 16, 2008

Mid August

Somehow, I thought I would be further along in my 'To Accomplish" List for the summer. The list that grows and grows throughout the school year, but then does not seem to have anything crossed off during the summer. Ah. But I have made some progress this week. Though I seem to have had to hit a bottom in order to get back up.

I mentioned before about the down feelings and the dragging feelings that I get. They really smashed me this week. I was so heavy feeling and cranky. One positive was that I read in one of my mom books from the libe that many American's (moms) are short in Omega-3 and that contributes to the depression that overwhelmed moms feel when dealing with disabled childcare. So I started to take Omega-3 and St John's Wart. I also read how important it was to get outside and soak up 'sun' even when the sun wasn't 'out.' I am unwilling to allow this feeling to take anymore days from me. I feel guilty when I get down, I feel like I am wasting my life moping when things can be so much worse, but anyone who has ever felt this hopelessness and helplessness knows that it is not rational, it seems to be more ingrained or internal. Anyway, I am chipping away at it and working at it.

I have been writing. Yea! I have been taking time to write at night, but it has been a little weird for me since this is the first time I have ever written where I truly feel like the story has a mind of its own. I start off thinking I am going in one direction and I end up somewhere completely different.

We are all enjoying watching the Olympics. Love Dana Torres. What a woman. What an inspiration! Micheal Phelps, Jason Lesiak and all the other swimmers (blanking out on their names) are so amazing. Love the beach volleyball and of course track too. The marathon was amazing.

Gymastics! Alex started to tie a ribbon around her hand or leg and do 'tricks' like the athletes she saw on TV.

The boys were home today and we went out for lunch to cover Roger's and Chris' birthday since we will not all be together again until November. We move Chris in tomorrow and I drive Nick on Wednesday. Janine and Abbi came over afterward to enjoy dessert with us. Their birthdays are coming up too.

Kath has been doing great. I have started to release my tight lease on her. Mostly because she is showing me that she can do more. We went to our neighbors', the Collins', to play on their swingset. Kath loved the swing and held on with both hands to the ropes. Go Kath! She liked climbing up the slide-not the ladder. :-) She liked to RUN down the little hill. At first I freaked and yelled, "Kath! No! Slow!" Then I could do nothing but watch as she threw herself down. She fell. I told her she was okay and to brush it off. She did. Then she pulled herself back up, walked back up the hill and continued to 'run' down it until she could do it without falling-which only took another two times or so.

She has also started to enjoy climbing more and more. She likes to climb on my outdoor reclining chair. I put the bottom portion down for her so it was a ramp she had to climb. At first she struggled to pull herself up, then she started to walk up it. Then down it. The boys complained that I would never let them do that. I told them, "You are right." I would have yelled at the other three for trying anything like that, but with Kath I see all of the work it takes her to balance and pull and rebalance. She is amazing. Not that they aren't too. (smile)Nick was a nervous wreck and yelling at me to take care of 'my child' as he saw her walking up and down the chair. "She's goingto kill herself!" Then after a few minutes of watching her and working with her she told us that she is doiong it fine . . .now that he trained her. (hee,hee)

More soon!

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

Friday, June 27, 2008

6 Month Eval, Great Strides, End of School Year, more Hippostuff, another tick and two chipped teeth

Ah-- another boring week!

I wish.

I will start with the eval. Great. We made great goals for the next 6 months that if Kath continues the path she is on, she should have no problem reaching them. One was getting better balance--that should help the chipped teeth. I will get to that. She is like a different child from 6 months ago. Quite the change, quite the work.

Our team of therapists continue to give us great ideas to work with and on, we would be lost without them. Welcome to Laurie, our newest member who does the OT.

School ended. Technically it ended Thursday--but I still had grades to turn in today and I need to go back and clean my room. Roger had graduation today but he goes back Monday for conclave--one of his very own brain childs to reflect on the year. (I think brain childs is a new word or phrase I created it!)I am so glad that we are 'off' now. I think I just made it. My stress seemed to be starting to overtake me. I was having problems with sleeping-but it became ridiculous this week. I had canker sores. I had headaches. I had chest pains. I am so incredibly tired--but as I said--sleeping is impossible. Hopefully that will change.

I am looking forward to trying to regain control of my stress eating (she says AFTER eating the chocolate!), exercising and of course writing. And reading. Our reading contest continues--more at another time . . . .

The girls had horse stuff today. Alex got to brush and feed her horse and another horse too, in addition to riding. She learned how to 'steer' and Christine said it won't be long before she can ride on her own ( I am hoping 'long' is a ways off . . .;-))

Kath was tired today. I worked this AM and then we ran chores so I thought she would nap in the car but she didn't really so today she slouched a lot and had to work real hard. Liz (Horsey Liz)said that Kath was great because she wouldn't give up. That was great to hear since that is something she does need to improve on for regular, old, on the ground therapies. I watched as she slouched and fought like heck to put rings on the cone--if that were here at home, she would have gotten up and walked away! She didn't give up though. She gets so excited when she sees the horses-- it so fun to watch and Alex has a smile from ear to ear for the whole session.

Kath had another tick on her. Ugh. I was a coward at first and called Roger (he was chaperoning his graduation), Maddy and almost Nick. I also almost just took her to the doctor. I am so afraid of it breaking off inside her, but after that happened the last time when Roger did it, I finally screwed up my courage and took care of it. I doused it in alcohol and then plucked it off. Her skin was red before I got it off but now it is a little red dot. Whew. She needs to wear a necklace of repellant.

Ah--today she fell on the tiled front foyer before Robin left us for the summer. Since Kath just buried her head in my shoulder, I thought she was okay and just shaken up. Especially since there wasn't any blood. On our way to hippotherapy I turned in the car (I was stopped waiting for bagels) and saw her lip was swollen and cut underneath. Then tonight when she took her bath to wash off her own whipped topping bath . . .I saw she chipped her two front teeth. Ugh. Just a little, but I hope they don't bruise. I hope she didn't damage any nerves. It is not like I can stop this whirlwind of activity from moving and trying new things, but she is just so clutsy and unbalanced that she does damage to herself. Scares me. Balance. Need to work on balance.

I will work on my storytelling--after I get some rest. Missed a friend's child's/former student grad party tonight. :-( Didn't realize what time it started and the kids were pretty beat after horse-day. Not to mention Roger was in bed by 7 (party starting time) and I am looking forward to sitting on the couch and trying to stay away enough to read at least one chapter of The Historian. Gee, I remember when I read a book at a sitting. Now I strive for a chapter--a page, a paragraph. Anyone want to be on my team for the reading competition??? :-) More lata.
My apologies for any errors.

Sunday, June 22, 2008


Friday was our second hippotherapy session.

Kath was scared the first time, you may be able to tell by the pictures. She screamed and freaked for the first few minutes. But once I walked next to the horse (Mark) and held onto her, she settled down and after awhile she held onto the handle with her right hand. She pet the horse and said 'stop' and 'go.' She even bounced her encouragement to Mark. I only have two pictures of her on the horse and that was before she actually became relaxed and enjoyed it. I took more this week and may be picking them up tomorrow.

This week there was no freaking. She has been signing 'horse' for the past two weeks. She allowed Liz to put the helmet on easily, as well as the belt. She even went easily on the horse and went without me! She worked on putting rings on a cone with Mark walking--so there was a lot of bouncing and balancing. She held onto stuffed animals (frogs) while the horse walked and she even sat on the horse backwards and leaned on both hands to keep her balance--that is a good strengthening execise. I was able to see how hard Kath worked, and she lasted longer this week, but I could see how hard it was for her and how hard she had to work to maintain her balance. She is amazing.

Alex had a sibling lesson and she was delighted. She knew that she would have to learn how to take care of the horse, she rode Babe, and not just enjoy the ride. She was willing to do that, but this time she just got to feed him a couple of carrots afterward. before we left the house to drive to EBCPT she said, "I am so excited, I am jumping out of my skin!" She cracks me up.

Well, that is it for tonight. Hope you enjoy the pictures!

Wednesday, June 18, 2008

OT, Hearing Test, Pulled Teeth, Walking Backwards,Car Issues (still)! And Tim Russert.

So . . .yesterday Katharina had her first OT appointment with Laurie and Kath was her usual charming self. She does this cute scrunchy-face smile that Nick used to do. She was exhausted by the time it was over; she worked hard extracting herself from couch cushions, pulling apart interlocking toys and assorted other games. She does really well with new people, especially if Alex is around (and Robin or me).

Today began with Roger taking off from school to take Chris to the oral surgeon. He had ALL FOUR wisdom teeth pulled! I thought they only did one side at a time so that eating could resume . . .I thought wrong. He had IV sedation and doesn't remember telling Roger "I like IV." Goofball. He is in pain but we are alternating the medicine so that hopefully will be contained quickly.

Meanwhile at almost the same time--Kath had her hearing test at Albany Med. The audiologist loved her and worked really hard to get good info (I am sure she always works hard-not just for those she likes). She heard tones I was not quite sure I heard. She moved her head in the correct direction each time. The earphones were put in her ears next and she did great for that as well. Then she had a test for other parts of her ear/hearing and did well until the end when she was tired and wiggling, so the machine kept resetting. But Leslie, the audiologist, was so impressed with how well-behaved Kath was anyway. Alex of course was the fantastic big sister/mom helper she always is. Kath's hearing is all within normal ranges, as far as they can test with her age and wiggliness. I have been so impressed by the people I have met on this journey and this lady was another wonderful soul.

After this I decided to finally take care of the blood work for stroke indicators. I miswrote last time when I said that Dr. Foster wrote the script-he authorized it but Dr Schottler (ped) was the actually writer. The script was FULL of tests. They needed 19 mls of blood! After they took the needle out the first time, I assumed they were done. But, alas, no. (I guess they had trouble with the spot and that is why they took the needle out.) They said they needed 15 more mls. I asked how many they took with the first needle and they said 4. I almost started to cry. I asked if we could come back and finish another day, but they said it had to be sent out the same day/shipment. Ugh. So this time they worked on taking it out of her hand. She screamed, but it was mostly anger, although when they had to reposition to rebleed it, it was from pain. She was a trooper and was asleep before we were out of Albany.

Wish I could have been too.

She is starting to bruise up though. She doesn't seem to have the same pain sensors, but that will be a writing for another time.

I have been putting this bloodwork off because I am an idiot. Because I felt as though 1) the reason she had a stroke was due to me and since she is not in utero anymore, then she couldn't possibly have another stroke; 2) I was/am so overwhelemed I didn't think I could handle anything else (as if having the test means she will have one); 3) I am afraid of what the tests will tell me. And afraid I can't deal . . .with one more thing.

While waiting to get the test there was this little girl and her family in the lab waiting room. They asked me a ton of questions about Kath and told me their daughter who was the size of a 9 month old-and running around--was actually 2 and just very tiny. She was getting tested to see what was up. The mom -who I never saw before- told me that I was a good mom for taking care and making sure I was doing everything I could to help Kath. Mind you, I was near tears the whole day. I didn't admit to her that I held this script in my pocketbook for a month and that I was petrified of having it done. But from where ever this woman got her strength and however she shared it--I thank God. Little rains of grace at times of fragility. It gave me the strength to stay put (and not delay it anymore), to hold and sing to Kath, to not cry, to try healing intentions, to breathe. I hope I somehow gave that woman something, but I doubt it. Maybe the next time I will be the strength when someone else needs it.

On my way home, I had to drop my car off at the shop AGAIN. The last time they got the wrong part--we have been going crazy with this for the last two weeks, at least. First they didn't know why the car was there--even though I had spoken with someone the week before and requested an appointment AND left a note in the car. Next day they didn't have my number . . .once again on the note. Then wrong part. Then no part. Now hopefully tomorrow will end it-they will fix it and we will be set. This place has been great in the past, so I think this is just bad timing. My stress is so high with the end of year and all Kath's stuff and then Roger signing up for retreats and classes even though I asked for peace this summer and house projects to be worked on. Continued money concerns. Worrying about financial aid for the boys for school. Grandpa in the hospital. Dad having treatment. Yada yada yada. So although a car is stupid in the grand scheme of Life, it is one more stressor in a stressed out person's life. :-)

Tonight . . .Kath decided to start WALKING BACKWARDS. As if watching her negotiate walking fowards isn't harrowing enough, now she is walking backwards and laughing with glee as she does it. How this girl trips LESS going backwards is beyond me. Ah. :-)

I have been trying to write more this week. I have worked on my story some and I need a lot more time with it, but it is going. I am also trying to read-I have a couple of books Maddy lent me and a couple from the libe on Kath stuff and homeschooling. I also have some classic lit books that I feel I must read, though it would be much better for me . . .if I didn't KEEP FALLING ASLEEP each time I started to read Ivanhoe!!! Although this year is not quite over I have been getting excited thoughts of ideas to teach for next year. I guess when that stops happening I will know it is time to leave teaching.

Alex told me when I tucked her in that 1-she will remember me for ever (not sure what she knows . . .but I told her that was good anyway ;-)); and 2- she will miss me when she is 'growd up' (I told her not to worry, she could build her house on our property, so I could hang out all the time with my grandkids and I could still cuddle with her. She corrected me--'snuggle, momma.')

She came down this morning 'All dressed. I wanted to try something new!' She was wearing red socks, purple stretch pants that were too short for her, a blue princess shirt with a her white tank t-shirt ON TOP of it. Ah, this girl is such a little fashion bug. And in case you are wondering . . .no, I did not allow her to wear that to the hospital today. She has the confidence for it, I do not. :-) Anyway, she spilled yogart on it. :-)

Love my crazy life. Love my crazy family.

PS. The death of Tim Russert is such a sad marker. What a wonderful human being we are now deprived of; a good man, great father and critical thinking journalist. When the world loses such a deep souled person, it seems only right that the rest of us step up our game to try to help the make up for the loss. To keep the world on its correct spin.