Ramblings

You never tell a kid on the high autism spectrum to take his best shot when he is on a manic and threatening to hurt you. Drew took his teacher seriously and hauled off and slugged him the other day. one day suspension. Last night Drew and I were talking and he was tell him that the other kids in his class find him annoying because of his Tourettes. I am looking for a book that will help his class understand. He admitted he is having trouble making friends and wishes there was a way to homeschool but have a different teacher. Not sure how that one would work. But I plan on asking about it.

Scott has been out of town this weekend- annual conference in Denver. Drew spent one night with Amanda and Julie - What do I do get? a 102 degree fever. Slept a lot, drank lots of water. Woke up this morning with a barometric migraine to top it off. Today we pick up Scott at the airport, I want to run by Joanns for their coupon commotion. There are several large ticket items I want to get that I have coupons for making them 40-50% off. Scott is home this week, I have a spinal tap on Thursday and then Scott leaves Saturday for an entire week. Should prove to be interesting. My legs don't want to work and I find myself "tripping on them" more and more. The trouble swallowing is becoming more noticeable especially when I eat soft things, like bread. I can't wait to figure this out. Until then I go forward one day at a time and know that God is watching over me and will be with me no matter what He has planned.

more tests

Well the tests aren't over. My GP ended up firing my neuro doc this week and is taking over my care on this issue until we can get into another neuro doc in a few weeks.

I had the nerve conduction test and according to the old neuro doc there are abnormalities but nothing he "can hang is hat on" Needless to say Scott and I were very frustrated.

My doc has ordered a lumbar puncture for next Thursday. Note the sarcasm when I say : I can hardly wait.

I see a new neuro doc the 23rd. I am hoping this one takes me seriously and listens to what is going on.

decent bedside manner would be a plus.

thought for the day

The road of life has so many twists and turns and obstacles, it is good to have family and friends to help us navigate the difficult ones and celebrate the good ones.

Saturday AGAIN

It seems that Saturdays have gotten into a routine around here. Scott goes for an early ride in Folsom with friends, Drew and I hang out, me on the computer, and Drew watching TV and playing. Pretty content if you ask me.

I remember when I was a kid Saturday mornings were crazy. I had gymnastics, Amie had Basketball, mom had to go to the grocery store and get other errands done. We had to get the house picked up from a week of living. They were fun times looking back. Usually Amie and I had one parent to our selves for part of the day and I always enjoyed the conversation with which ever parent I was lucky enough to spend the time with. I am sure my sister felt the same way as well.

Monday is the BIG day for me. Scott is taking me to the DR. for the last of my tests (I hope) and then I will get some kind of Diagnosis (I hope) and a treatment plan. I am scared of what the doctor might say but at the same time it will be nice to know what in the HELL is going on with me.

When Phil was born I refused an epidural because I couldn't stand the thought of a needle in my back. So I opted for a C-section. Thursday I told Scott I would gladly let them give me an epidural if it would stop the pain in my legs.

Scott is sending me home for a week. I come in April 27 and spend 2 nights with my dad and Andrea. I am really looking forward to it. Dad and I get a day together and that will be fun. Then I head for Lawrence for a 3 hour coffee with Carolyn. that same day there is a mini reunion in Topeka at Huhot for anyone that wants to attend. If you want to come let me know and I will send you the info. I am spending time with Phil and Betsy as well. The main reason for this trip is May 3. That is Phil's 22 birthday. I haven't spent a birthday with him since he turned 18. We are spending the day in Lawrence. We have something very special planned and I am honored that he would want to include me. We plan to go to Seabury and see his old teachers and my old friends. We are going to stop by my old stitch group so I can see some of them and then our special adventure. My sister would be good on this mission. she has wonderful taste. Then lunch at Pachamama's if I have my way. I miss my kid. I want to spend this time with him the same way my dad wants to spend time with me. It took me a long time (I am a little thick headed sometimes) but I get it now and to spend time with two of my favorite men has me very excited to make memories with both of them.

Health Update

Not sure how to take it. The MRI came back with no changes from the one is September. While I know this is a good thing(it showed no stroke or no growth in the 2 suspicious spots in my brain) it also showed normal blood flow etc. But since it showed nothing new, we need to figure out what the heck is going on. Over the past few weeks I have noticed more problems in my legs not my arms and hands. Yesterday at church I didn't have my cane and about toppled over - if it hadn't been for Scott and our friend Ben I would have been in a heap on the ground. I learned my cane needs to always be with me. Even if the day starts out with me feeling great - it can so south at any moment.

I emailed the neurologist to ask what the next step was. Not sure I want his answer. Part of me is worried that the is going to think I am nuts and say there is nothing wrong with be. I do have an appt with another neurologist in March and I am keeping that appt. HE is to be the best of the best.

I just want it figured out so I can go back to having some semblance of a life again. As Jay and Grant from the Ghost Hunters say - On to the next (in my case test.)

Another Saturday

Saturday has rolled around again. I think it is gonna be a pretty quite weekend for us. Next weekend appears to be pretty busy so I will take the down time when I can.

It has become routine that Scott go to Folsom on Saturday mornings for long ride with a group of people. He gets up about 530 and does his thing. He putzes around the house and about 7 he leaves. I try to grab a little more sleep if Skippy allows it. Other wise I get up and take him out. Once I am up I am up and can't go back to sleep - at least for a few hours. I try to catch up on mail, bills, insurance crap, mundane life things. I never know day to day how I feel but my alone time on Saturday seems to be when my brain works and I can get stuff done.

Drew gets up and on goes a movie and cereal in front of the TV. I remember Saturdays like that when I was a kid.

Scott gets home usually between 1:00 and 2:00. Usually we try and go out for dinner. We find our selves eating more Asian and vegetarian food since I have been sick. I do love my favorite Korean BBQ place tho. I love bulgogi.

They have taken dairy away from me as well now - ever try to go to chipolte and get a burrito - cant have it. gluten. So go with a bowl right? No cheese or sour cream. It looses something when it is only rice, beans and chicken.

Next Sunday is going to be fun. We are hosting a Mystery Dinner for our CHILL parents. The mom in charge told me yesterday that there are 10 couples coming. We are doing potluck. We love these friends. The support, love and fellowship we provide each other is amazing. We go camping together, have a monthly mom's night out. The mom's have rented a cabin in Tahoe and we are all headed there the first weekend of March. Fellowship, eating, crafting and napping for an entire weekend.

time to get back to my Saturday.

FTPD

C

PWD 2011

Scott has the pictures so they are not available to post. That being said, it was another successful year for Andrew at the Pine Wood Derby.

He did hold track record briefly this year but was knocked off first by a Den mate and then by a BEar. His car was clocked at 238.9 mph. The fastest car of the day was 240.1 mph.

Drew did take home two trophies this year. He placed Second in the Wolf Division (back to Districts) and his car was voted Fastest looking car by all the attendees.

Scott helped this year. He put cars on the track and if you have a scout or have done scouting before you know that placing cars on the track is a job. All the cars for the heat MUST be lined up exactly, you can't touch the wheels, you may not place your child's car on the track. And those are just the race rules. Once again Drew's car is in the hands of the Cub Master because we may not make adjustments to the car before the District tourney.

For some diehards, they think nothing of spending 150.00 for their kids PWD car. There are laser cut cars, special wheels, paint, etc it is quite a racket.

I love seeing the effort and creatvity that the boys put in to their cars. Their imaginations get to run wild.

PS my mom's recipe for chili lost the Chili Cook off.

Canes

I wanted a cane that wasn't an old person cane. You know that aluminum/gray one that old women carry. I didn't want that. I am only 43 facing a real bum diagnosis. I can deal with it. From what I can tell it is not a death sentence it is just a life changer - God telling me "Hey time for you to realize you are not in control and you have got to trust and put your Faith in ME." HE will hold me in his hands through this and no matter the outcome He will have my back.

Back to my cane story. I decided that I wanted FUN canes. Canes with personality like me. Quirky, fun, mischievous, daring, happy.... I found a really cool website where I plan on ordering 3 canes from. One is black with flames - like House carries. One is a quad cane that is blue with the moon and stars painted on it. The third is pearlized purple with rhinestones. Due to a monetary slip up. I over paid a bill by 2000.00 and am currently waiting for the refund I can't order them yet.

But I went to CVS and got 2 canes. One is covered in pink roses and the other is brown and black checked. I may go back and see if they can order me one other one I liked but they were out of it at the time.

I have come to the conclusions canes are like purses - you can never have too many.

proud owner of....

My doctor today gave me 3 things. A script for a cane to help with balance, the signed forms for me to go stand in line at the DMV to get a handicap parking pass and an actual appointment time with a specialist to figure out what is wrong with me. It is the end of March but that is better than not having one at all. This specialist picks and chooses his patients based on case history. So him agreeing to take me is the first step.

I know I am facing a lumbar puncture, another MRI, nerve biopsies and who knows what else. My doc thinks he has an idea what this is. I am not a fan of what I have read of his possible diagnosis. Chronic inflammatory demyelinating polyneuropathy. At this point it is just a guess.

It is hard to describe the sensation I feel at times. My arms feel numb and my legs feel like they are being tazed. at times it is an all over feeling of tingling like right now. Like there is a low voltage current running through me. I won't lie I am scared. I know there are treatments to put this in remission.

Just like everything else, God knew me before I was born and picked the path I was to travel. I may not understand why it is but it just is.

SKOOL

I am a homeschool mom. I say it loud and proud. The past 2 years being home and schooling Drew have been remarkable. I have learned a lot. I also learned a lot today.

When I picked up Andrew from school his teacher escorted him to the car. I am thinking "GREAT! is the real Drew finally coming through?" Having a teacher walk your kid to the car is not something you want.

Instead, Mr. Weidel walked to my side of the car and showed me a note that Andrew had slipped to him. All it said was " i licke skool" It spoke volumes.

I have defended home school for the past 2 years and I honestly feel it is the best education most kids can get. But there are exceptions. Drew being one of them. He loves the structure of school. He loves the socialization of school. I will continue to be a home school mom at heart but for now Drew is where he wants and needs to be. I want him to love learning and for him school is where it happens best.

haven't been around

Sorry I haven't been keeping up with my blogging duties. I have many things to talk about but I am finding out people are reading my blog and then using things I say against me within my family. So I have decided to focus on things that don't have to do with my personal life that people can mistrue and get defensive about. That makes me sad because I always felt like this was a safe place for me to talk and if family chose to read it they would realize this was my avenue to vent and talk and exercise my right of free speech, and be myself but I am quite tired of the toxicity within my family right now. Some times family can be as toxic as trying to be perfect. I am tired of people who claim to know me trying to change me. Telling me how to act, how to be what they want me to be, how I was a disappointment to them, that they know more than me on every subject whether they honestly do. But to try and advice them is like entering the center of a hurricane and I become the worst person on earth.

Therefor while I will continue to talk about my kids, becoming Gluten Free, vacations, etc. My private life info is going to be off limits because I have found that I am honestly not free to be me. Censorship is a bad thing It is sad that "family" tends to judge the harshest even when they have no clue what is actually going on in my life. Judgement is not love but then I really wonder what family love and support look like these days.

my motto for the year.

It's a toxic desire to try to be perfect," she says. "I realized later in life that the challenge is not to be perfect. It's to be whole."

Jane Fonda is not one of my favorite people. However, I watched Oprah a few weeks ago and heard Jane say this. It really struck me. As a girl growing up there were expectations on us. Not the same ones from our mother's generation. We were told we were to go to college and get a degree and have a career before family. I messed that one up. I had no real drive when I was in the years 18-23. I got married to escape what I thought at the time was a horrible home life - looking back it was much better than I gave it credit for. I didn't rebel in high school I rebelled later. I got married, had a baby, got divorced, moved in with my parents, got my act together, graduated from Jr. College. Got a job got remarried. Adopted a baby, moved twice because of my husbands job and am now settled in Sacramento California.

There has been lots of reflection on my life in the past few months. Facing MS (and it has not been ruled out), my son entering a new part of his life, giving up homeschooling for something that drew needs. My life has been in constant flux for years.

What Jane Fonda said resonated with me. My whole life I have been trying to be perfect, perfect daughter, perfect friend perfect mom, perfect wife,perfect housekeeper, being the perfect everything to everyone. God knows I was not perfect at any of them. Most I failed miserably at in my younger days.

I was/am so busy trying to be everything to so many people that I have forgotten about me. This year I am going to find out what makes me me and make myself whole. I don't know what that will involve but I know there will be more reflection on what I enjoy, what I am good at, my relationships and which I feel are worth my time and energy. Do I do things because I other people enjoy them and I want to make them happy or am I doing something that full fills me? Am I in school for me or to full full some sort of dream others have so I don't disappoint people any more. I am not sure what "complete" means. That is the question. Stay tuned to find out the answer.

not yet

Yes I know you are all dying for the Disney stuff but you have to wait a few more days. I need a couple days to reflect on other things.

Today Drew went back to brick and mortar school. He loved it. I think he liked the social aspect quite a bit. That was the BIGGEST concern I had about home schooling in the first place. We joined several HS groups but he needed more socialization opportunities.

With his learning issues and anxiety issues he is in a self contained classroom with 8 other kids, a teacher and 3 aides. The plan is to begin to main stream him next year.

It was strange not having Drew around today. I did get lots accomplished. All the Christmas stuff is packed away, Scott and I moved offices, and I got a power nap. It was also very quiet with out him around. I never realized what a large presence he was. Scott and I have decided that Drew will still participate in some HS activities such as International Day, Gold Rush Days, weekend HS trips and our camping trips. That way he can have the best of both worlds.

I still hope to find a way to do Story of the World with him. It is an awesome history series that we both enjoy. I also want to set up a website and have us track Flat Stanley/Stella around the world.

This was one of the most difficult decisions I have made in parenting. I know for now it is where Drew needs to be. I loved our HS time and can't wait for the day we can resume it.

we made it.

we are home. I have tons of pictures to post and stories to tell. We were selected Wilderness Lodge Family of the day and got to raise the flags on the lodge on our last full day. It was amazing. We had a private photog as we did it. The views were amazing. Drew got a blue Mohawk. (pixie dust got to me.) His head is now shaved. We ate too much, spent too much, had more fun that you can imagine. Drew was named artist of the day at the Magic Kingdom and his artwork was displayed at the Disney Art Gallery. I however am paying the price and am having a full blown Fibro flare. I have been flat on my back for 2 days. This is the first day I have been even remotely upright for more than 20 minutes. the pictures will be up in the next few days. And there are stories behind many of them.

Be patient with me. Drew was to start school tomorrow but it has been put off till Thursday due to an emergency with his Program Specialist. Lots of issues that have to be dealt with concerning that as well. I am here and have much to tell and reflect on.

To Excited To Sleep

This is me for the next couple nights. 2 and a wake up!!!!

Mom part 2

So after I made that last post I was sitting here in a funk. All of a sudden, outside I hear lots of laughter and then singing. There was a group of kids going down the middle of the street and stopping from time to time all the while singing Christmas Carols. The stopped in front our house and Drew and I watched out the upstairs window. All of a sudden, they started singing my mom's favorite Christmas song. The Christmas Song Never in the three years have we been here has this happened. Never in the three years that we have been here have I been in such a funk.

I know many people don't believe in such but I took it as a sign that my mom was here and that it was all going to be ok. For a minute I felt her next to Drew and I, holding my hand, singing along.

I miss you Mommy. Merry Christmas

mom

There are lots of days I miss my mom and grandparents, today is one of two that I miss my mom it hurts like it was yesterday that she passed away.

Christmas was my mom's holiday. To her it meant family, love, time together, to be thankful for all we had. It just doesn't feel like Christmas. Living in California is hard during the holidays. It is not cold, there is no snow, there is no family except the three of us. This year it is worse because Phil is not here.

When I was a kid, we would always spend Christmas Eve going out to dinner with our grandparents. Some times if the weather was bad we would order pizza. Several years mom would boil shrimp and we would have a feast. Then back to our house to open Christmas presents from each other. My dad always called it conspicuous consumption. It usually did look like a wrapping paper factory threw up when the chaos was over. After we went to bed, Santa would come. After waking mom and dad up at ugly early and checking out the loot, mom and dad would go back to bed. When they were finally up there was flurry of activity as mom started cooking Christmas dinner. My grandparents would come over and some years my dad's other relatives from Hiawatha would join us. My dad was a firm believer that kids needed to be in their own environment during Christmas because it was a such a confusing chaotic time for them and being in their own home allowed some sense of normal routine.

I have tried to recreate the Christmas of years past. I have realized that is not possible. I can never be my mom. All I can do is remind my children of the meaning of family and when all else fails all we have is each other.

As we got older my mom became more of a Christmas fanatic. It would take a weekend to put up and decorate the tree. My parents best friends the Hazlett's would trek to Kansas city the day ofter Thanksgiving and start the process. I know there was one year that dad and Allan held the tree up while mom and Peggy rushed out to get fishing wire to string up the top part of the tree. I always felt safe and warm during Christmas. While we didn't do lots of baking and such, it was still my family and my traditions. I miss my family in Kansas. I wish many things could be different. I wish the closeness of the holidays was still present in all of us. I cherish those memories of Christmas' past. Sometimes I feel like it is all I have left.

Hard decision

Scott and I have to make a rough decision tonight. To some this might not sound hard but to us it was trying to hold on to our youngest sons childhood just a bit longer.

My dad does a wonderful service every year. He calls kids all over the country to help Santa check in on kids. I think last year he said he had 30 kids on his list. He has wonderful sleigh bells. He loves doing it and kids all over the country have a bit of magic during their holiday.

Dad offered to put Drew on his list this year. After much discussion Scott and I decided to decline. Drew is getting very good at discerning voices. He can tell when the same person plays different characters in movies. He knows who Steve Carrel is and knows what movies he has animated for example. Drew talks to my dad on a regular basis and we were worried that he might recognize the voice.

Drew has been questioning the reality of Santa vs the meaning of Santa lately. We have a Shelf Elf and the other Drew asked me if I would ever lie to him. I said not intentionally. He asked if I realized that Shelf Elf was plastic and why didn't he ever blink. HMMMMM.

We want this last year of belief for our own selfish reasons. We aren't sure if he as grasp what Santa is all about so we are holding our breath. I think the belief has lasted this long because he has been homeschooled. After this year I am sure we will be having discussions about Yes Virgina and what Santa is all about.

My youngest is growing up. I am glad we have had this long.

If you have seen one.....

Last was was a rare celestial event. It was a lunar eclipse that happened on winter solstice. This event has not happened in over 300 years. Pretty spectacular if you ask me. Drew on the other hand....

Scott came to bed about 1130. I woke up and decided we all needed to trek into the backyard and witness this event of historical proportion. So Scott woke up Drew and asked if he wanted to see it. Drew was up in an instant. He was so excited. We all went the the back yard - there was a break in the rain so we could actually see the moon. It was at about half covered. I explained to drew the significance of this event. He seemed duly impressed. After watching for a few minutes we all went back in.

I asked Andrew if he wanted me to wake him up in a couple hours so he could see the full lunar eclipse. "No thanks mom, once you have seen one lunar eclipse you have seen them all. I would prefer to sleep."

So much for being impressed.

Karma

Today Drew and I were at Henry's Farmer's Market. I had to pick up a few things. We were waiting at the meat counter and Drew was begging to stand on the cart. Being 70 pounds that is not a good idea so I told him no because it would tip the cart. After several attempt to change my mind he asked why not when other kids were allowed to do it. I replied that "I guess I am a mean mom" At that point I dropped my phone. Drew looked at me, shook his head and said "karma" and walked over to pick up bananas.