Catching up

What a BUSY few days.

Friday - Beautiful day! T-Rex started the day going up in a hot air balloon. She was a top reader in her school, so Brian went up in the balloon with her. She was very excited, but as a mom I was more than nervous. I don't want my kids to ever be afraid of trying something thrilling, but a small basket suspended under fire, and fabric which could plummet to the earth doesn't quite make me feel safe. It was my last day of school, so I couldn't go, but Brian took pictures from the balloon, and my sister took pictures from the ground (none of which have either been developed, or emailed to me). I made Brian promise to call the moment both of them had their feet on the ground, which he did. Thankfully.

It was a half day for me, so I was able to go and help Cheesie celebrate her last day of daycare (11 years of daycare payments are now officially behind us - YAY). Margie and Michelle are fantastic women who were willing to take in Blondie about 8 months after her surgery. They treated her like every other kid, and taught both of our younger girls respect and manners. Cheesie was a little sad because she won't see her friends much any more, but she is so focused on going to kindergarten she CAN'T STAND IT!

After grabbing Cheesie we drove like mad over to Blondie's kindergarten singing performance. It is a nice tradition, and after singing they give you a portfolio of their work for the year - a WONDERFUL thing to have from your child. There were endless songs about friendship, but she was very proud of herself. What stood out to me was how small she was compared to everyone else, and also how adept she is at figuring out how to do things like everyone else. She had figured out tricks to do the hand movements everyone else was doing (although I did breathe a sigh of relief that she was not in the class using sign language through a whole song - that wouldn't really work).

Saturday - Another busy day - BALLET RECITAL. Unfortunately we do not have photos of each of the girls' dances (they announced that they would ask you to leave if they saw you take a picture). We did take a few pictures of Blondie's class rehearsal of Pretty Woman, but T-Rex and Cheesie's were missed. I do have professional pictures though and will send those to grandparents soon. Blondie and Cheesie were in a performance from 9:30 to 11:15, and then T-Rex had 2 dances in the 11:30- 1:15 show. Then there were two more performances of the older kids, but 4 hours of a lot of little girls in costume was quite....um....fulfilling. Of course our kids were amazing.

Last night was 5th grade graduation for Big Al. I've never been very big on graduations - I think we should stick to high school and college- but I was proud of her none the less. She won several awards: Presidential Award for Education Excellence, All A's in 5th grade, Governor's Writing Award Class Winner, and Honor Roll. It was quite long (8 classes of kids), and our other kids were troopers. Unfortunately Brian couldn't get the camera to focus while she was walking through line, but here is a picture of her, and one with the principal. Big Al will go to a magnet middle school next year for high end kids, and she is very much looking forward to it -although she will greatly miss seeing her best friend everyday.

Today was the last day of school, so we begin the lazy days of summer. I hope to be spending a lot of them just like this:

Dinner tonight

I promise to post pictures of T-Rex's balloon ride this past Friday, and catch up on a few other topics, but I had to share with grandparents Blondie's cooking prowess.

Blondie is 6. We were in the garden tonight and she noticed a few beans growing, so she started picking. When she got a handful she took them in and asked if she could cut them. Now, Blondie only has one hand that works, so I gave her a dull knife and told her to figure it out. She cut the ends off of all of them. Meanwhile I stepped into the restroom - that was probably a mistake. I hear the microwave buttons being pushed and then starting. I hurry out to find a metal bowl in my microwave, beans in the bowl (no water), and a TON of salt and pepper on the beans. She was quite happy to help with making dinner.

I've lost my mind... If you find it please return it

Some of the blogs I love to read are about large families - WAY larger than mine. It makes me feel better that other people have to multi-task faster than I, and I appreciate the pictures of their children, but I'm really looking at the backgrounds. I want to see the laundry piled up on the couch, or the shoes and backpacks dumped in the middle of the floor. It's one of the main reasons I watch Little People Big World - that woman lives a REAL life with 4 kids - except for the whole destroy the house and live in two rooms and run out of money to finish the house thing.

I'm having one of those days that I wish I could pull off gracefully and full of fun, but the reality is that I blew it in the cheerful department today.

First, I am having to casually clean out my classroom while trying not to remind 7th graders that I am leaving. I will be switching to my kids' school next year, and my students are none to pleased. Many of them (no, not all - I'm not THAT nice) want me to go up to 8th grade with them and make Algebra the most amazing experience they will ever have, but I'm dropping down to 5th. So they are building bridges, and chatting at their tables, and I hear, "Look Ms. D someone glued a penny on the wall!" Another group got detention because it is SO FUNNY to put glue on each other, that conversation went like this:
Me: What are you doing?
Them: "OMG Ms. D. Chillax."
Me again: WHAT ARE YOU DOING !!! (note: you have to raise the voice because they don't hear you unless you yell or repeat yourself 4 times)
Them: IDK Ms. D like having fun?
Thankfully I speak fluent cheerleader so I could translate. My response? I put my hair in a ponytail and said," FYI ladies, D 10 chun see ya there."

After school I picked up Cheesie, drove across town to sign my new contract, and then went to the girl scout store - on a different part of town. I grabbed a million badges that the girls have earned, and called Brian. Now, men do not appreciate the stress that woman have on their lives until they work from home and therefore have time to pitch in a little more. Brian was trying to put Blondie in a tutu and follow all directions on the recital sheet, when T-Rex piped up with the fact that even though she told me she had overalls to play Annie in her recital she didn't actually have them, but remembered she used to have a pair - at some point in her life. So she went in jeans and a t-shirt that are SO not right that we will replace by Saturday. I finish filling out camping paperwork. We meet at dance where millions of little girls are in absurdly colored costumes, waiting in a huge room for their chance to run their dance two times and then get their pictures taken. While waiting, and being the multi-tasker extraordinaire that I am, I use my time to put up Blondie's hair, frown at T-Rex's choice of "orphan clothes" and put together the girl scout envelopes for most of the girls, and the special Bronze Award boxes for the 5 older girls. I did forget the camera, so Brian volunteers to run home and pick it up (surely trying to avoid the tension exploding from my head). I will give credit to him (although I'm sure Big Al had something to do with it) he did remember a brush, and ponytail holder and all parts of Blondie's tutu.

From there the girls and I went to a restaurant to meet the rest of the girl scouts to celebrate Big Al earning her bronze award and Brian ran to represent us at the soccer parent meeting. By 8:30 we are all home, and I look around and realize I haven't been here since 7:00 this morning.

I know that I hear frequently, "I don't know how you do it, I sure couldn't." The truth is that I don't do it perfectly everyday, and my house is only clean if I am 100% certain that someone is going to come over. Thank goodness for teaching schedules and summer vacation. I'll finally get to some of those projects that need to be done, and maybe I'll be unstressed by the time August rolls around.

I'll post the pictures tomorrow because I still have to get the laundry off the couch, and stack the dishwasher and water the garden, and then...

Memorial Day

Today I am writing in honor of my grandfather, Cecil E. Newman jr. He was killed in the Korean War around August 18, 1950. I say around, because the date varies. While growing up I always knew that my mom, Cathy, had a "first Dad." Cecil was killed when my mom was 4 months old.

As a graduate of West Point Cecil wanted a career in the military. He had grown up in small town Cuero, Texas. He attendended Texas A&M and then left to join the Army in WWII. He fought in the Battle of the Bulge as an infantryman, and then came back to the states and got an appointment to West Point. He was a bit older at that point than the other cadets, and he got to wear special insignia as a war veteran. He was incredibly shy, and very musical.

While on training in Myrtle Beach, SC he met my grandmother Wes Anderson at a USO type dance for the cadets. He had been hanging out at the record player looking at the music when one of the upper classman approached him and ordered him to dance. He looked around, saw grandma, and "figured she wouldn't bite." They danced that night and then began a long correspondence. We are lucky to still have these letters from him. Most are about his plans to try to get from New York to South Carolina, and are almost always thwarted and leaving him miserable. From his letters I gather they only saw each other 4 times before they were married.

After they were married they were stationed at Fort Benning, GA where my mother was born.

In late July, early August of that year he was sent to Korea to fight. On August 15, 1950 on Hill 303 he was captured along with about 40 men and marched by the Koreans. He was tied together with the other men by commo wire. At some point in the next three days he and two other men (as we have now been told) managed to escape, and tried to get back down the hill to the Americans. They were captured and executed. A day or so later the other men were lined up and shot as the Americans advanced up the hill. A few men survived to identify the captors, but no one was convicted of a war crime.

Many great men and women in our family have served our country through the various wars, whether on the ground, or behind the scenes. Our family is proud of all the generations of soldiers, and remember those today that were killed while serving.

Rasmussen's sucks but it isn't the end of the world

Part of the reason for starting this blog was to keep in contact with family regardless of their location, but the other reason was to share our experience with Blondie's illness. I decided a long time ago not to go too public with the details of Blondie's illness/surgery, but those that know us are lovely and let her live her life. Those that are facing this brain surgery are desperate to see pictures - they MUST see them because they need to be prepared. Several new families are part of a group I belong to and are either scheduled for surgery or trying to decide what to do, so I'm going to post pics here to share with them. The picture above shows Blondie at age 2.75 the weekend before seizures began. Totally normal, but she was receiving speech therapy because she was behind in that department.

Then on Nov. 5, 2004 I got a call from daycare telling me something was wrong. She had walked out of the playroom, grabbed the cabinets and looked scared. She wouldn't respond to her daycare lady. Afterwards she had to go to the restroom, but kept falling asleep on the potty. I took her to the pediatrician, but neither of us saw anything wrong with her. She was playing and silly. So I took the rest of the day off to "observe" her, and went Christmas shopping. In a store she had her first seizure that I ever experienced, but KNEW EXACTLY what it was. Ended up in the hospital that night, stayed the weekend having seizure periodically, and then jumped on the medication train. I hated the meds, but made it up to Thanksgiving thinking she had epilepsy. The day after Thanksgiving we went back into the hospital and ended up staying three weeks. She was having hundreds of seizures a day - every 3 - 5 minutes. The doctors were testing for what it wasn't - everything was ruled out except an enzyme disease that was terminal, and Rasmussen's. There was no test for either unless we did a brain biopsy for Rasmussen's, but we were just wanting a second opinion at that point. We were sent home for Christmas and told to watch for limping, or not using her left hand. Three days after Christmas she held a cup by pushing it into her right elbow and then curving her arm around it - she had to be reminded to use her left hand. The next day she started limping.

By the end of that week Dr. Park at the Medical College of Georgia was able to see us. He had treated quite a few kids with Rasmussen's, and did the same surgery for intractible seizures, so he had seen it before. He took one look at her and scheduled the biopsy. About 10 days later we were at MCG - about an hour from our house- and biting our fingernails about someone opening her skull and removing a piece of tissue. Surprisingly though she bounced back immediately and was out of ICU in one day, and playing her bed just fine. Unfortunately the disease was moving so fast that she needed surgery immediately. They had to change her meds to decrease the chance of bleeding excessively during surgery, and allow two weeks for her to get them out of her system. The Monday before her third birthday her surgery would take place. Those were the longest two weeks of our lives because the seizures were SO bad. She was put on steroids, and began to eat OBSESSIVELY. She gained so much weight that her belly was solid and distended. Her round face because ridiculously chipmunkish, and we literally had to block off the pantry.

So on January 24th, 2005 she had her brain surgery. Brian and I, his parents, and my mom were all down there. We waited in the prep room trying not to be too anxious in front of her. I kissed her left hand, and watched her wheel off behind those swinging doors. After about 8 or 9 hours we were allowed back into the ICU to see her. What impressed me the most was how still her body was. Not a twitch. We had moved fast enough that it hadn't spread in her brain. By all accounts from the surgeon (Dr. Mark Lee) and Dr. Park, everything went brilliantly. Their was fluid between her skin and her skull, and made her head look even larger. She ended up with a black eye. Thankfully our surgeon didn't shave her hair, he just had someone sort of cornrow braid it out of the way so she still had her long hair. Every muscle on the left side was turned off, and had to be worked. It began with chewing. The first few hours food would get stuck in her cheek, and her tongue couldn't get it out of there. By the second meal she was doing fine. Notice in the second picture she was eating a French Fry. I think we only spent two nights in the ICU before we moved to the regular surgery recovery rooms. She began therapy immediately. She learned to hold her head up by herself, turn it past the midline, sit up for about an hour at a time, and stood on her own feet by Friday. We also celebrated her third birthday despite a huge ice storm. I remember being concerned because it took her awhile to get her personality back, but after about two weeks she would try to play again. It was hard though because she had to adjust to having only one hand working.

I remember the squish sound her head would make (like water trapped in a sponge), her head also seemed to get a little larger as the fluid moved around. It did go away, and everything is totally normal now, but it was a little unnerving at the time. These three pictures were all taken at the end of the first week.

It was recommended to us by these therapists that we go to a hospital in Atlanta for inpatient rehab, and I must admit to being surprised that Dr. Park actually thought we should have gone home. I wish I had listened to him. We thought at the time that inpatient would be able to give her more than regular therapy, but now I know better. We ended up going to Atlanta and I was miserable. I think it was a combination of stress (I gained 30 pounds from this experience), exhaustion, and the need to be a "normal" family again. We ended up staying 7 days, and I was SO WANTING to get out of there that I think they let her go just to get rid of me. I was supposed to wait to get her dressed so they could "supervise" me. I was supposed to get permission to bathe her so they could make sure I could do it. I had to be watched when she brushed her own teeth. I figured she was the 3rd of 4 kids, and I had plenty of experience helping kids get ready in the mornings. I'm also not an idiot, and Blondie's right had was what she used anyway to brush her teeth, so that hadn't changed. They were more than a little put out that I kept her in a stroller instead of a wheelchair. She couldn't walk that week because they couldn't seem to communicate with each other to get the correct brace made, so I finally said "I'm out of here, release her now." They attempted to schedule therapy in our town for her, but messed that up, and I ended up finding it myself.

The best advice I can give about therapy is to use tough love. I've mentioned it before, but I love Blondie and want to make her the best she can be. I have to care more than she does because she doesn't know about the future, or skills she will need. Children with this recovery process will cry and beg you not to do their exercise. They must. I played with her, scolded her, hugged her, and bribed her like you wouldn't believe. I will not be told to wait in another room. I must see what therapist are doing with her so that I can do it after therapy and in days in between therapies. I would also advise not to put limitations on children like her. Blondie is about to begin swimteam again, has her dance recital next weekend, thinks she wants to play soccer, climbs everything on a playground, and attends regular kindergarten for another 10 days. She is learning to read, and told me a lot of information today about an animal she is studying. She wants to call friends and go to their houses, and is manipulative with therapists.

We are now 3.5 years out from her surgery, and it is wonderful to say that it is not the driving, daily force that it used to be. I think about it a little because I'm always looking for ways to normalize things for her, but I have 3 other young ladies that I am raising, and disabilities will not get in our way. Brian and I are raising 4 young women who will all attend college and become whatever they want to be, they will be strong and independent and take care of themselves. They will not live at home (unless this gas thing lasts FOREVER) and they will find their own way to be an adult. We know what we want for our girls, and Blondie will meet our expectations just as the others work to meet them.

With Dr. Park on her two month checkup

Math and Art

I must make a public confession. My students know this about me, but even those of you who think you know me well may not realize this. I have a PASSION about math and art. My students see me reading math biographies, or "God created the Integer" or "Sacred Geometry" and realize that I'm VERY serious about my math. I have also lately focused on work by and about Calder - we saw his work at the Smithsonian in D.C., and I was absolutely fascinated by it. I was hoping to someday go back without very small children and just sit still and watch them move. My girl scouts will tell you that Jasper Johns 0 through 9 is one of my favorite artworks (hmmm art and numbers- can't go wrong) and we walked through the special exhibit about him and the endless ways he worked the same piece of art (the girls even drew their own version on the ride home). In my mind DaVinci was probably one of the most brilliant people ever on earth.

Somehow recently I came across a website about Dutch artist/engineer Theo Jansen, and I am hooked. He creates the amazing kinetic sculptures that walk, and he wants to build herds of them to walk on the beach - out there, but SO COOL to watch move. The perfect combination of math and art. I must admit though that some of his artwork unnerves me in how they move - so very regimented and sort of crablike. Check him out: http://video.google.com/videoplay?docid=896557073146925329&q=&hl=en
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Therapy was today, I forgot my camera so I'll try to upload the video of her walking from last week or so. I love this new brace. It has really evened out her gait.

A family (you've probably seen them and their daughter Jesse on the news channels) has recently come forward with their daughter's story. She will have surgery like Blondie's in June. They have generously started a scholarship for kids like mine who are entering college (yes, they go to college). If you are interested in contributing to the fund please let me know and I'll hook you up with them - a really great family. ALSO, just passing on this tidbit from my yahoo group, one of the young women like Blondie just made the Dean's list at her college, and generally carries a 3.25 in her Speech Language Pathology major. See - we can do that too.

Two separate topics

Yesterday we had a lovely day at a state park letterboxing. If you haven't been letterboxing before it may be something fun to add to your hikes. It goes like this: Go to http://www.letterboxing.org/ or http://www.atlasquest.com/ and find your state and city. Get clues to a letterbox near you and plan to take a hike. You will need a rubber stamp, an ink pad, and a pen, as well as a LOT of water and snacks. As you hike the trails you follow the clues to a box hidden in the woods where you just won't casually come across it. The box contains a rubber stamp and a book. Some of these stamps are beautiful handcarved works of art, others are from the store. You stamp your rubber stamp in their notebook, and then stamp their stamp in your book, then hide everything back where you found it. You can see Blondie with her notebook in front of her above. We use letterboxing to keep the kids entertained while hiking longer distances. Sunday we got them to go a little less than 4 miles WITHOUT COMPLAINING. Most excellent.



The second topic tonight is state testing. Probably not a big issue for you guys, but I'm in the middle of administering them right now. In a class I took this year, someone gave us a website called http://www.notonthetest.com/ . I highly recommend listening to the lovely song on the front page of the website. I absolutely think there needs to be accountability - not everyone can teach well. I personally don't mind if I'm required to teach curriculum, but many days I feel limited by what I have to cover, and the general level of competance (which varies from class to class). Math is one of those things I have to constantly go back and reteach earlier topics which means what I need to teach gets pushed back a little bit. But as a teacher you can't teach rules for parallel lines with a transversal unless someone has used a protractor before - then the whole "which set of measurements do I use" pops in even though you KNOW they were supposed to learn in it 5th grade. I also do not have the power to go home with each of my students and make them finish their assignment to be prepared for the next day. So when less than half show up without their work completed it's time to revisit yesterday's lesson again. And, DON'T GET ME STARTED on how UNFAIR it is that children with severe learning disabilities have to take the test on grade level. Not all children with Down's Syndrome can take the 7th grade reading test even if they themselves are 12 or 13. You watch one cry because they can't do it, and it will change your whole perspective. Okay, off my soapbox now.