The 2nd Annual Hydrocephalus Association WALK!

    Another thing I had this week was the DFW Hydrocephalus Association WALK! This was our 2nd year doing it! We got to set up the night before which was a big help! That meant we only had to get up at 5:20 am! So we all climbed in the car, including Bonnie. Clyde has been getting more nervous around big crowds so we had him stay home with Dolly. Which meant not having to deal with 2 dogs and a crappy dog stroller like last year! Bonnie kept herself pretty entertained with her toy and bugs while we set up the last bit of things.

  I had to make the balloon arch this year! I had some help, and we found out we shouldn’t be the ones making the balloon arch. I also think we should probably either do something that is not a balloon arch next year, or hire a person who knows what they are doing! The walk went well from what I could tell, which is good because all of us Chairs and Co-Chairs had a lot going on this year!   The walk raised $30,000...not bad! My team raised $945! I was very happy I had a team again this year to walk with. And my brother's hockey team helped out! I’m mad though because I never thought of getting a photo of everyone! We were just so busy! Another successful year I think!

Thank you to all volunteers and people who donated to help make this possible!!

March of Dimes Signature Chef Night!

   This last week (actually, this last year) has been so crazy for me...but fun! Back in the beginning of the year March of Dimes asked me to be the Ambassador Family for their Signature Chef Event! I was thrilled! In the past the ambassador families always had young kids and the parents told "the story", but here I was 18 and I could tell my own! I was very excited -  it was a  whole new spin on the idea. 

  I went to a lot of March of Dimes events throughout the year, and had to talk at them or I helped teach new family teams how to run their team. I met a lot of great people, made a lot of new friends, and saw a lot of old friends. Over the year I also worked with March of Dimes' videographer to make a video about me for the Signature Chef event. You can watch the video here- http://bit.ly/15SCAFWVideo

  Which brings me up to last Thursday - the night of the event. I had worked the event last year handing out light up rings to those who donated, but this year I met the chefs and gave a toast to the night! Then the event started and I got to try all the amazing food that the chefs made! I think I made it around to everyone! I hope I did! I was so busy saying hello to everyone. They started the auction with items like chefs auctioning off making dinner at your house for you and your guests! Halfway through the auctions they showed my video and then afterwards I got up on stage and thanked everyone for coming. I was nervous, but I did good! It was a record breaking year...$306,000 was raised! They raised in 30 seconds what took our DFW HA WALK a year to raise! It was such a great opportunity!

Toasting the Chefs

With the Co-Chairs and Head Chefs

Our friends and guests for the evening

All of the Chefs, plus me with my mom, grandma and brother

My grandma and I before the Event!

Onstage, saying THANK YOU!

You have no idea where my scars are.

   Lately I've heard from someone that my blog posts are too negative. Looking back through all of them, I really don't see that. I really shouldn't be giving any more attention to the 'haters', the ones who just want to pick me apart to make themselves look better (or smarter, I don't know), but since they don't want to actually come talk to me about it...

    YOU don't know what it is like to live with Hydrocephalus. I do. YOU don't know what it is like to go through 6 brain surgeries, an eye surgery and a triple hernia surgery - all because of the Hydrocephalus. You haven't had 3 surgeries in a year - for a condition you can't control. You don't know about all the other physical issues I have to deal with daily, because of the Hydrocephalus. You don't get the daily headaches that I do. You don't have to wonder, DAILY, if this strange feeling in your head, your eyes, your stomach is shunt failure, or just regular old normal people flu. You don't even know how to pronounce Hydrocephalus! You have no idea of the affect this physical condition has on my brain. You aren't even able to explain what Hydrocephalus is. You have never bothered to read any of the educational materials I have given you, which explain how Hydrocephalus can affect the way I learn. You have never gone to a conference and met others with Hydrocephalus. You have never been there when other kids have bullied me because I was different. You have never been there when I didn't have a friend, because kids thought I was different. You have never had to deal with an administration that tells me to my face that I don't have a disability and the only way they will make accommodations for me is if I get a diagnosis of ADD. You have never been there when teachers have chosen to ignore my 504 plan, and instead made fun of me in front of the class. You have never had a teacher LAUGH at you when you tell them that not too many years ago, people died from Hydrocephalus. You have never dealt with any of the school systems, and having to continually educate them about their ignorance towards kids with disabilities.  You have never helped me when I struggled with school work. You have never been there for one of my surgeries. You have never even noticed when I have had a surgery! You have never been to any of the hundreds of doctors appointments, MRI's, ER visits, or physical therapy visits (just to name a few). You have never had to miss so many days of school for doctors visits or because your head hurts so much, that the school starts penalizing you. You have never been to, nor donated to, any of my fundraisers.

   But you know who DOES get it? My mom, who has watched me struggle daily since the day I was born 7 weeks early, almost 19 years ago. My grandma, (my mom's mom) who was right there too. And my grandpa (my mom's dad), who was also right there from the beginning and took night shifts at the NICU - who was the main babysitter for me, my twin sister who died when we were 8 months old, and my younger brother. The only babysitters my mom trusted were her parents. My mom's older sister - a teacher, who is constantly sending me books and looking for new ways to help me learn. My friends who have Hydrocephalus, and their parents who have also dealt with it daily.

   You think that just because you have experienced something completely different, because you know of a person with a disability, that somehow makes you an expert on what I experience on a daily basis? No, it doesn't. You have not even spent enough time with me to read my blog, and hear my voice saying it. You only read it in your voice. And YOUR voice is negative. Not mine. I am truthful. I am honest. And maybe the truth of Hydrocephalus is too much for you, but I am trying to explain to the world what it is like living with an invisible medical condition that never goes away. You have chosen to judge me. I suggest you educate yourself, before you claim to be an expert on me.

   You have no idea where my scars are.

DFW HA WALK 2015

    There are 76 days until the next DFW HA WALK! I am very excited. I hope you can help me reach my goal! Here is the link: http://HAwalk.kintera.org/dfw/eilish

Road trip to Grandma's

   My mom and I decided that once the school year was over we were going to drive up to my grandma's house! I was very excited, I hadn't been on a road trip in a very long time. 

   While it wasn't as long as our 11 state road trip we did when I was little, it was still good. We were going to drive 3 days through 5 states with 3 dogs! Yes, 3 dogs! But before we could leave I had to take my ACT test and I had a interview with the March of Dimes for a video they were making about my family since we are the Ambassador Family for their Signature Chef Event. Both of those were on June 13, so we picked the date June 14 to leave.

   It was good to have that week and a half between when I got out of school and when we left, because I had to pack up my room since we are moving to a new house when we return in August. I also had to pack for Montana, but had to leave some stuff out that I needed for the interview. It got confusing! 

   The ACT was boring and long. As soon as I finished it I went back home to meet with the March of Dimes and start the interview! I was nervous, but it was a very cool experience! I talked about how and why I support the March of Dimes, and the difficulties I still have from being born premature - such my Hydrocephalus. As soon as that was over my mom and I did our last minute packing for the next day. I was so busy on the 13th that it was actually kinda nice because I wasn't just sitting there thinking "I just want it to be tomorrow!" The day went by fast. 

March of Dimes interview.

DAY 1  

   We LEFT Denton by 6:30 am - I didn't feel tired though. The dogs did great! We went through Amarillo, TX, since we had never been that way before. We drove through the Palo Duro Canyon, which I really wanted to see and we went to Cadillac Ranch, another place I really wanted to see also! We got into my uncle's house in Denver at 10:30 pm! We also drove through some crazy storms!

Cadillac Ranch

Bonnie fast asleep!

Clyde being an annoying brother, squishing Bonnie.

Clyde looking out the window.

Palo Duro Canyon.

Crazy clouds on the way to Denver!

DAY 2 

   We left about the same time.  We drove through Wind River Canyon on our way to Worland, Wyoming. My Grandpa grew up in Worland and my mom wanted to show me his house and the town. Bonnie and Clyde pretty much slept or entertained themselves the whole day.  About half way through the day Dolly discovered COWS and barked at EACH one, as if she was counting. It was kinda cute...in the beginning.  After many hours of that noise we made it to my other uncle's ranch in Montana at about 7 or 8 pm. We drove through more storms this day too.

   Just as we were going to bed in the log cabin (my favorite place on the ranch), we let the dogs out. My mom said not to worry about putting Dolly's leash on (even though the pups had theirs on) so I didn't.  Dolly wandered a little out of my sight and I was thinking "Dolly get back here it smells like a skunk - this is gross." So I call her and the smell just gets worse and she comes in the cabin. The smell is just awful!! I've never smelled anything worse!! Ah, it was so bad!

   My mom and I are trying to figure out what happened, keep her from rubbing on the furniture, and the pups from getting near her while we figure out what to do at midnight in the cabin which was also 48 degrees. So we opened the windows and put her in one of the 2 bedrooms, turned on the essential oil diffuser we had just bought, and covered Dolly in lavender hand sanitizer. Then we felt bad, because she was going to be cold so we brought her bed in, opened the door and made a little barrier. We had a little space heater and we wanted the air to get to her too. Then my mom, the pups and I went to bed in the other room. 

Dolly "counting" the cows.

I thought this looked pretty.

An old school house.

Ayres Natural Bridge

Another crazy storm on the way to the ranch and a double rainbow!

 DAY 3

   We woke up and we were going to hike with my uncle and my cousin, but my head felt terrible. Hydrocephalus, always getting in the way. I was OK with staying at the ranch since I hadn't been there in 4 or 5 years! So we took the dogs by the horses and turns out Clyde is obsessed with the horses! So much so that he ran his way into the corral!! Yes, Clyde the dog who is afraid of everything! He loves the horses, and the horses seemed very interested in Clyde too.  My uncle got him out of the corral and he was fine. Bonnie wasn't so sure about he horses, she made her ugly face at them and they left her alone.

Clyde checking out the horses.

   My uncle and my cousin took us around the ranch on the ATV and I got a lot of cool photos! After that we went to the Fishtail General Store and got lunch. Then we went across the street to a little rock shop that I always go to when I am in town. I really like rocks, and the people that own the store are super friendly.

The part of the ranch where the log cabin is.

   After that we drove back to what I call the Big House. It is where my uncle and his family stay (and usually guests too). We had dinner and then went back down to the log cabin for a bonfire with friends from a neighboring ranch. Dolly and Clyde loved rolling in the grass and scratching their bellies in the grass. We don't have nice grass at home, like they do in Montana. Bonnie liked the grass too, but since there was a lot of grass, there were a lot of bugs in the grass for her to watch. That's why she liked it. Clyde was still crazy about those horses and tried to go see them any chance he could. Dolly smelled better so we think we walked through a place that had been recently sprayed, or what we did worked! 

    My uncle dumped a container of wood into the fire, and along with it came about 50 mice. They all started to scatter and Dolly actually caught about 5 of them! She would've caught more but we didn't let her. The guy from the neighboring ranch has 10 dogs that are the same breed as Dolly and he uses his dogs for mountain lion tracking. (So that he and my uncle can take pictures!) Anyway, he was really proud of Dolly's mice hunting skills!

Bonnie

DAY 4 

   We left around the same time for grandma's house with a slightly stinky dog and a slightly upset dog who still wanted to run with the horses. We stopped back at the rock shop and got breakfast. Dolly continued to bark at EVERY SINGLE COW SHE SAW. I don't get it, because in Texas we drive by Longhorns alllll the timeee and she either doesn't even acknowledge them, or when she does, she's scared of them! We made it to my grandma's around 6 pm and she was very, very surprised... she was the only one who didn't know we were coming this early, we had wanted to surprise her. And we did!

(video)? 

Bonnie, Dolly and I.

School Part 4 - Guyer

Well. My first year at Guyer is over! Finally! 

While I think I may have gotten used to Guyer, I still don't like it very much.  First of all, I only had a few good teachers. The school was helpful in writing up my existing 504 plan, but I don't feel like it was followed that well by the teachers. Not to mention, the school is so big I hardly knew where anything was! For instance, I barely made it from Photo Journalism to English in the 5 minute passing period.

Anyways.

The classes that I took were:

American Sign Language. Yay!

Physics.

Drawing 3. Yay!

English 3.

Algebra 2.

Culinary Arts...which I dropped after the first semester and changed to Photo Journalism and then Principals of Education and Training.

I also had 5th block off too! Yay!

I love ASL and I did very well in that class, even thought the class was filled with REALLY annoying freshmen girls! It kinda sucked to start the day off with them.  I've caught on really quick to the language and I think that is cool! It is very easy for me to learn.

I'm also doing really well in Drawing 3, which is really surprising considering my Art 1 and Drawing 2 classes from the previous high schools were a joke! The class is a lot of fun and I actually look forward to going to it. My teacher for that class is awesome, and she really seems to actually care about me. She is my favorite teacher at Guyer and Drawing is my favorite class.

I felt I was doing well in Culinary Arts, but I also felt like the teacher singled me out as the one student he was going to nit-pick about every little thing. The class was not fun and was way too stressful - not because I didn't know what was going on, but because I seemed to be the only student who knew what to do. I thought this class would be full of people who loved to cook like me - but instead it was full of people who didn't even know what a spatula was. So I decided to drop that class, because I can cook at home and not have all that stress. The only good thing that I got out of that class was my Serve Safe Card.

Culinary Arts got replaced with Photo Journalism which I really like! I also took Principals of Education, which I took because it was my only other option. It's not a bad class, I just don't think I plan on being a teacher.

Math is still the same for me, confusing and hard! I had to retake almost every test and quiz! Physics is also difficult. I am so happy that I am finally done with these classes!!

As for English, oh my god I HATE this class! I'm bad at English and it doesn't help that my teacher is unhelpful, rude, mean, and crazy! I don't know how she is still a teacher at Guyer, I don't think she should be a teacher, anywhere, at all. Her 'standards' are wayyy too high for a regular English 3 high school class! One of our last test we took was a 3 question test. It was so confusing it took her 30 minute just to explain it and it took me an hour and 40 minutes to take it. Really?

She also uses only one type of question on her tests.  Any good teacher would know that a test should be made up of different ways to gather information because all kids test in different ways - she should have essay, true and false, multiple choice, matching, etc. But no, she insists on only doing really confusing essay questions. This doesn't work for every student - it only works for the ones good at writing short answers. She is one of those teachers who's only given one 100 during her entire teaching career and brags about it. 

She gets mad when we don't do an assignment that she claims she assigned - but in reality she never did. When I missed a day, I learned it was pointless to ask her what I missed.  She wouldn't tell me. She would just point at the computer and tell me to look it up.

When I talk to her she stares at me like I'm stupid.I wrote a paper that she said was college level material, but she gave me an F. This paper was about fundraising for Hydrocephalus. She laughed at the part in the paper where I said, "...before the shunt was created people just died..." Yes, you read that right. She laughed. She also seemed shocked when I corrected her about my own brain condition when she knows nothing about it. She called it a disease. I could go on and on about what a terrible teacher - and person - she is. 

Anyways. Moving on.

Over this year I have found out that the Attendance Office is absolutely awful!! They have one job, and yet they continue to mess it up. They take months to input any excuse notes, claiming that they are so busy - however, if you don't turn in an excuse note immediately, they will refuse to accept it.  The ladies who work in the Attendance Office always sound really mean and irritated that someone actually expects them to do their job. I haven't met one person who actually likes them or thinks they are helpful! At one point they sent a letter home saying they would no long accept my mom's notes if I was sick and would only take Doctors notes. My Hydrocephalus affects me in a lot of ways and sometimes I do not feel good enough to even be sitting up, let alone, be sitting in a classroom with annoying teachers and students. My mom sent them a letter back 'politely' telling them that after 18 years of dealing with Hydrocephalus, she and I know more about it then the Attendance Office and that they WILL be accepting her parent notes. She told them that if the school was willing to pay for my MRI (which the neurosurgeon would have to do if I even was able to get into his office the same day) each time my head didn't feel good, then she would be willing to take off from work and take me to the doctors. If they didn't want to pay that, then they just needed to mind their own business. So they said they would waive that rule for me. Sheesh!

The counselors aren't much better. When we talk to them about our problems at Guyer (with teachers or attendance) we were basically told 'if you don't like it, leave'. I asked them if I was able to just take the classes I needed to graduate - I have 25.5 credits and need 26 to graduate - and perhaps only go in the mornings (like other kids have done). Instead of telling me if that's a possibility at Guyer, they said you can come pick up a transfer application to Fred Moore - which is an alternative last chance school. 

 Sometimes I got to go home at 3:10 pm when 5th block starts, or I stayed and did homework. But when I didn't have homework and couldn't get picked up early, I would hang out in the art room with my favorite teacher! However, I usually ended up using 5th block for doctor's appointments.

 I also have like zero school spirit, I don't care to go to any of the pep rallies. I only went to one just so my mom would shut up about it.  I refuse to wear a Guyer shirt, my mom keeps saying she is going to buy me one. I haven't gone to any sports games, and quite frankly I don't care if (insert team) wins or loses. Sorry, I'm not a Wildcat.

 One of the things that has been probably the most interesting for me so far was Homecoming. No I didn't go, but I was at school. It started when I got to the bus stop and only guys were there. I thought that was strange, but then I got to school and saw and heard all the mums... 

That's why no girls were on the bus, you can't mess up your mum. These things are annoying and pointless and there should really be a ban on allowing cow bells on these things! So you probably think I'm talking about a flower, right? WRONG!! Not even close. Here's what I'm talking about - a Texas mum:

I don't know what the point is of these, it's only a Texas thing. Anyways that was one of the strangest things so far and they are very, very expensive too! I'd rather buy concert tickets or something.

The Little Ice Storm!

Here is some cute photos of the dogs (mostly Bonnie) playing in the ice/ snow. Clyde has pretty much refused to go outside today, but Bonnie, Dolly and I have been out playing!

The only photo I have of Clyde before he slept on the heating pad all day!

Bonnie and Dolly! Also, the only one I have of Dolly.

And now Bonnie! She seemed to like the ice/ snow more than the other years.

Weeee!

Playing in the ice/ snow. She liked to have me throw some snow so she could chase it like she chases the pool cleaner. Which, of course she checked about a hundred times to see if it was on!

It was a very busy day! She ended up falling asleep on my shoulder.

Happy Holidays!

   Hello everyone and a very, very belated Happy Holidays. I have been so busy I am just now getting around to this! I hope you all had a happy holidays! We did! A crazy one too!

    Bonnie and I were going to be Rapunzel and her lizard Pascal for Halloween, so I ordered a costume online. But my card was declined, and it didn't notify me till a few days before Halloween! So, G's hockey team was going to a Stars game and he wasn't using his ticket. So for Halloween I was a Stars fan! It was fun. I like going to hockey games and hanging out with G's team.

   I spent Thanksgiving and my 18th birthday with my friend Katie and her family in California! It was a lot of fun! We went into San Francisco and I got to see the Bay Bridge lights and go to Ghirardelli Square! I also bought clothes. AND the Seahawks beat the 49ers, on Thanksgiving, which was also my birthday! 

To top it off, when I got home Bonnie was waiting at the airport for me!  (Oh, ya, and on the flight there I had the WHOLE row to myself! YES! It was great!) One of my presents was supposed to arrive in the mail when I got to Katie's and it didn't get there until right after I left for the airport! Darn!

  A couple weeks after that I flew to Seattle to hang out with my family and go to a Seahawks game! I also got to go see the Space Needle and go to Pikes Place Market! It was nice to be back in Seattle I haven't been back since I left 12 years ago. AND to top it off the Seahawks beat the 49ers again! :)

It was pretty cool -  I flew in on 12/12 (the ultimate 12th Man Day haha) and then the Hawks won on the 14th and I flew home the 15th...the day they retired the number 12 for the fans back in 1984! Also, I was allowed to board the plane home early, because I was wearing a Russell Wilson shirt! 

At the top of the space needle!

My cousin and I with the SeaHulk and his wife!

  Then I came home and went to school the next day and took 2 finals that I wasn't even able to study for, because honestly...why would I spend any of my 3 days in Seattle studying? So I hope I passed! I took the rest of my finals and I got out of my culinary class. I have more about that in another post.

  Finally! It was break and I got out a day earlier than everyone else, because of the way my classes worked out with the early release days! I wen to see the Broadway show of one of my favorite movies "ONCE" and it was really good! The next day I went to a Christmas party for the hockey team! It was fun and quite entertaining watching them sing Christmas carols for the people at the nursing home, until I was told I had to go help the players sing. G wasn't even there -  he was visiting New York!

   I also made a gingerbread log cabin, except I just skipped the frosting and used hot glue....

I also made cupcakes and cookies and they were really good!! Mom and I put up the tree and I decorated it.

  On the 23rd we were asked if we could do an emergency fostering from one of the vets near by, so we picked them up on Christmas Eve. They were very cute sisters named Nessa and Elphaba, the only problem is they didn't tell us who was who! So we call them Blue and O because of the colors of their collars. That made a total of 5 dogs at our house, but all of them get along sooo well! Now over a month later they are both adopted and Clyde misses his girly O.

Sleepy pups!

Dolly and Nessa (Blue) checking something out.

Elphi O as we called her sometimes was here a couple weeks longer than Nessa.

She made herself right at home. (and there's a Bon Bon burrowed in the blankets in the back ground)

A typical wrestling session - girls against Clyde. Don't worry Clyde is fine. He loved it! He would always go right back at them. 

   Back to Christmas Eve. We went to Buca Di Beppo, like we do every year, for Christmas Eve dinner. Christmas was fun! Our pups got new toys, which all 5 dogs have had fun with! Bonnie loves, LOVES, L.O.V.E.S. her toy she's played with it almost non-stop everyday! I got a new camera!! YAY!! I've got some really good photos already! I also got nail polish and pens and squishy sand! It's like playdoh and sand together! I'm really 6 years old lol :)! I also got one of those spirograph things. I loved the one I had when I was little, but I lost it. Now I have one again! I also got a book about Kalispell, MT (where my grandma lives). It has really funny police reports and they turned them into a book! I also got gift cards and a candle!

Everyone in their Christmas clothes!

Just like me Bonnie was not a fan of dresses and more a fan of sweaters.

Also this happened! Dolly tolerated Bonnie!! 

   The next day mom and I both felt a little sick, but we still decide to drive an hour and a half down to Bluff Dale, TX to have dinner at a restaurant that was at the March of Dimes Signature Chef thing and was really good! But, we got down there just to find it's closed. Nothing online said it was closed! So we started to drive back sad, sick and starving! Luckily, It wasn't very late and Ft. Worth has other restaurant we like so we went there!

   The next day we had been planning on seeing Bob Schneider, but we were so sick we just couldn't do it and usually I can suck it up for a concert! I was just way too sick this time! We did however go to the Seahawk watching party and guess what I got to wear? My birthday present (that arrived late at Katie's) an official Russell Wilson jersey from my grandma! Finally here! It was delayed because of storms 2 times!

   We haven't done much else, but get better and take care of the dogs. New Years eve was very mellow because we were still sick, but Mom and I had fun making fun of the DFW New Years Special. 

Now, I'm back in school. Ugh, it's so chaotic.

Anyways, I have a lot of cool stuff planed. I am the Signature Chef Ambassador family for the March of Dimes, so I was asked to speak at a Kick-Off dinner in Fort Worth and helped teach a Family Teams Training. Plus more stuff coming up that i'm helping in! My mom and I also went to  Austin with about 100 other volunteers to meet with representatives at the state capitol to lobby for March of Dimes issues. I am  also going to Charlotte N.C. to learn more about the Hydrocephalus Association WALKS so I'm going to be more of a leader in the upcoming walk this year! I'm excited!

A good attempt got 3 of the 5 dogs in the photo!

Happy New Year!