I AM

I look around and feel off balance in my life. I look around at everything we HAVE and it doesn't feel right. Why do I need 2 boxes of yarn? Why do I need 4 TV's. There are only 3 of us. We have as many computers as people this house. I am feeling bogged down by all the STUFF that we feel we have to have. I look back at the small house we had in Kansas - it wasn't that small it was 2200 square feet. I wanted more. Now I want to get rid of so much of it. I am tired of stuff. I feel like there has to be more than stuff.

Why do humans always want more? I have jackets I haven't worn in years but I don't get rid of them because some day I MIGHT need one of them. I look at my youngest and I am realizing I am setting a bad example for him. I lost my cell phone and after not finding it in 4 days I had to go buy a new one. I didn't need it. Drew found my phone a couple days later. I am part of the NOW generation. I never WANT for anything. If I want something I go buy it. I am realizing that is not the way to live.

As I have lived in California for the past few years I have realized that so many people have a sense of entitlement. I am one of them. I want to be someone who sets a different example for the world. I don't know how I am going to do it but there is a path I feel I am being called to walk and changing my thinking my step is the first step. Wanna walk with me?

Go to the Oprah site and watch and read about Tom Shadyak and who he was and who he has become. Also learn about what 3 guys have done in Uguanda for the invisible children. After reflecting on how I want to live my life and know I am not fulfilled and it is time to make the changes and follow my hearts desire and give back to this glorious Earth.

65

Yesterday, my mom would have been 65 years old. Not a day goes by that I don't think of her at least briefly. I think anyone who has lost a parent does.

I wasn't sad yesterday, just kind of melancholy. I spent a lot of time thinking about how I would have marked her 65th birthday.

As Scott was leaving for Vestry last night I looked at him and said "She would have been 65 today" HE hugged me and said he saw my tweet and knew she had been on my mind.

Andrew was standing there and asked who was 65. I told him that his Grammy would have been 65 if she was still alive. He said "well she still is 65 today. Just because someone dies doesn't mean that people can't celebrate."

At that point he said " where is the cake and candles?" Scott went to Vestry and Drew and I had a cupcake to celebrate my mom.

Like my friend Elaine said "sometimes it just takes a kids perspective" I think Drew just started a new family tradition.

new obsession

Still waiting for some tests to come back. So far everything has come back negative EXCEPT I barely had Vitamin D in my system. I just wish the one test that was sent away would come back. That is the one everyone is hanging their hat on.

Since Drew is back in school I find I have more free time on my hands. I have been perusing the internet and have found some amazing sites. I thought over the next few days I would share some of my favorite ones.

My first site is jasmere . I have never found a more wonderful company. Their customer service in INCREDIBLE. It is similar to groupon but on a more broader scale. Jasmere seeks out less known specialty shops on the internet and then using their bargaining power negotiate great prices. The more people that buy the bigger the discount. You are then mailed a voucher # at the end of the 24 hour period to use on a specific website. You have 3 months to use the voucher.

I have made 4 or 5 purchases from Jasmere and have yet to be disappointed. Several of my friends have been giving me a hard time about Jasmere because I am already buying Christmas presents. Yes I know it is April and Yes I know I shouldn't mention the C-Word until at least July but with the things I have gotten I can't help it.

I have bought baked goods, purses, reusable shopping bags, 6 months of recipes (gluten Free) YEsterday I was the customer of the day and I won a gift card to a stationary store. I can't wait to use it.

If you are interested in Jasmere let me know. If I refer someone to the site and they purchase something I get a 10.00 referral fee to use on future purchases.

Next I will be talking about phatfiber and their wonderful fiber giveaways

Please note I do not recieve anthing from these companies. These are just my opinions on sites I enjoy and hope you do to.

poked prodded and drained

Saw the new neuro doc today. WOW. I have found the older Asian version of House. Found out this is the number one person in the area for neuro disorders. He reviewed old records, found things we didn't think we significant. Ordered another MRI - this time of the spine. I had so much blood drawn to day that I am feeling a little pasty. Trying to get authorization for another test.

I feel like this doctor is listening and trying to figure this out. That is such good news after all the road blocks. I go see him again in 6 weeks and hopefully we will have some answers.

So now we wait.

I don't remember much

I know many of you have seen posts on FB as well as here that my dad was here for a week babysitting me. Here is what happened

I went in for my lumbar puncture as planned - however the aftermath was totally unplanned. The lumbar puncture went fine but when I was in observation afterwards is very fuzzy. I remember them telling Scott that I had to wait 2 hours in observation because of being prone to migraines. I remember telling Scott I was getting the worst migraine ever. I remember someone loading me in to the car and being rushed 2 blocks to the hospital. I remember a really nice security guard staying with me while Scott parked the car. I remember after sitting in a wheelchair for a while Scott grabbing a nurse and telling him that I had had a lumbar puncture and I had to be laying down. Then I was on a gurney in a hallway.

I was eventually put in a ER room. At some point some point I got an IV. No clue when. I got a CT scan to check for a stroke - no clue when. I lost the ability to swallow. Remember a nice nurse taking the water from me when I started choking. I was admitted to the hosptial. Scott knew I could not stay alone with Drew for a week - heck we didn't know when I was going to get out of the hosptial. SCott had to go to Dallas on business that could not be postponed in anyway. The government doesn't put off meetings.

He called his mom first but she couldn't get out here till Tuesday. So SCott called my dad. The next thing I remember being told that Dad was coming to stay and take care of me. Thanks to Andrea for arraging everything and sacrificing a week with out dad during the rainy season and the crack in the wall. Thanks to Mary Lou for not being able to come.

What I do remember is having the best week of my life with my dad. It was the most wonderful theraputic week. Lots of talking laughing crying loving healing. What we both needed.
Dad met my friends, went to Dr.appts, pack meeting, knitting group, DRew's OT and speech and so many other little things. IT meant the world to me.

We see a new neurologist on Wed. We now have more questions then answers. No one can explain what happened after my puncture. It was scary. I have so many holes in my memories but I think that is probably a good thing. But not as good as having my dad to myself for a week.

Raising a child with a disabilty

First let me say this week has been incredible. THe lumbar puncture not so much. I will explain what happened in the next few days. But until then let me say my dad saw Holland this week and has a new appreciation for it's wonders, beauties and difficulties. And I have a new appreciation of my dad as well

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 guide books 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 a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. 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....and 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."

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

today is the day

I have so much to blog about about. the kid who hit drew but didn't get suspended. I am still fighting that battle. Teaching others about Tourettes. Teaching Drew about Tourettes. Deciding to take my life from what ever this damn thing that is making my life a living hell. Getting ready for my hubby to leave for a week in Dallas. My upcoming trip back to Kansas.

But today is my lumbar puncture. I will be strong because I have God on my side as well as wearing my 2008 Jayhawk National Championship Tshirt.

Back soon.

Aspergers

My husband wrote a very profound blog on what it is like to live with Andrew. It gave a day in the life instance that we have to deal with regularly. It is hard for people not living with a child like Drew to understand the day to day struggles we have. I hope you take a minute and read Scott's blog post

Aspergers

I wouldn't change anything but there are days the struggle seem so overwhelming but Drew is such a wonderful fun loving little guy I couldn't imagine doing life with out him.

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.