Katie Beckett

I usually blog about book reviews. I am sad that I am not going to get to blog about a book I was hoping to read by a new author. Katie Beckett lived in Iowa and was working on a book for teens when she died this past week.  Katie Beckett and her mom, Julie, are the reason that I can do most of the things I do today. Katie was the first person to receive a Medicaid waiver. When she was little, her story made President Reagan change the Medicaid rules to allow kids with significant health care needs to live at home. I have a Katie Beckett waiver, and it allows me to live at home, go to school, and in general be a typical 12-year-old. Being a typical 12-year-old is really important to me, and it requires a lot of effort on a lot of people's parts. Growing up it's been nice to know Katie's story. Against all odds, she grew up, went to college, and was trying to become an author. That's a lot like my dreams, and because of Katie Beckett I can grow up and fulfill them.

Another Interruption, Update on my Trip to the White House

I wanted to share a little about my BIG day yesterday, I mean, how often does a girl get to go to the White House? It was very exciting and interesting. I went with my mom, Rylin Rodgers (she works for lots of places; FV Indiana and the Riley Child Development Center) and with Margaret Comeau (Catalyst Center), Brooke Lehmann (National Family Voices Policy Director) and Diane Malley (The Statewide Parent Advocacy Network (SPAN) of New Jersey)and her family including her daughter, Carissa Schlichting, who is going to be a Freshman in High School. For the first BIG meeting we meet with by Kareem Dale (special assistant to the President on disability issues), Jon Carson (director of the office of public engagement) and Nancy Anne DeParle (deputy chief of staff to the President), along with members of Kareem's staff. They asked each of the adults to share why Medicaid is important to families who have children with special health care needs. The thing about Medicaid is that it is COMPLICATED, there are lots of different types and states have different rules. The other families live in states where kids with serious health conditions have Medicaid coverage when they are born, in Indiana where I live there is a waiting list and I have only had Medicaid for a few years. This is was important because my mom could talk about what it happens to kids who don’t have access to Medicaid and why even really good health insurance is not enough to take care of kids like my brother and I. I got to talk about how Medicaid helps me and kids like me, I also got to talk a little bit about what would happen if I didn’t have Medicaid (very scary) and what did happen when I didn’t (very, very scary).


Kareem and Jon (do you think I can call them that?) talked about what was happening with the debt ceiling and how many people including those in Congress don’t know what cuts to Medicaid will mean to families. My family has told our story to our Representative and Senators and has asked everyone who knows us to call too; I want to make sure that the elected officials make decisions know about the kids and families this matters most to. I really don’t think it should matter if the officials are Republican (like my Dad), Democrat (like my Mom) or Independent, they need to know that disabilities and special health care needs can happen to any family and that families like mine are important parts of our county.

I think it is excellent the President Obama is asking real people like my family to talk about this issue, and I wanted to THANK him for working on this for me (and so many other kids).

I got to go to a 2nd meeting with Brooke, Margaret and my Mom to speak with Vice President Biden's staff about Medicaid. That was great too, and I just have to say the crown molding and ceiling in his offices were really cool. Getting to go into his office was pretty much the highlight of my day, maybe someday I will get to see the Oval Office!

I was excited to get to go to these meetings, I learned a lot and it was great to try to help other families. I am worried about what could happen to me and other kids like me if Medicaid is cut. You might know from reading my blog that I have BIG dreams and goals and that I need a little help to reach them (wheelchair, medicine and TONS of doctors). I hope you will call your Representative and Senators and tell them why Medicaid matter to your friend Laura and other kids like her.

THANKS!!!!

P.S. Back to books, I promise! I have 5 I need to post about from the past couple of weeks!

Missing ALA

This is the time of the year when I am most envious of you lucky ducks who are members of the American Library Association.  You are mostly all at ALA this week.  Because I got to go last year I know how exciting and fun it can be.  I had the best or second best week of my life last year at ALA (I can't decide if it beat my 6th birthday when I spent at week at Disney World and had lunch with Cinderella on my birthday.  They were both amazing.).  There is the one thing that is better about being at home: I slept until 11:00 this morning, and I'm not exaggerating at all.  The reason I am thinking about this right now is that I did my 10 page 4-H scrapbook this afternoon alone and it was on my amazing experience at ALA last year.  My favorite page title is Ace of Libraries (about the cake Charm City Cakes made last year) and my favorite picture is one of just me at the Newbery/Caldecott Gala.  So my request to all of you lucky ducks that are at ALA right now is to post a comment about your favorite part and the things you are doing / did so that I can hear about ALA Annual 2011 while I remember ALA Annual 2010.

Camps, Camps and More Camps

It seems like it has been years since I have posted.  I got out of school on Friday, June 3rd.  My classmates got out the Tuesday after, but many left early like I did because they had vacations planned before the snow days were added.  Saturday the 4th I left for MDA camp at Bradford Woods, in southern Indiana.  Matthew (my brother) went too.  I had a wonderful time.  Matthew's 14th birthday was the 7th, and although he didn't get to see his parents on his birthday he had a great time and some of the campers and counselors sent him birthday cards and a few presents they bought with fake money that they won on casino night.  We got home on the 10th in the afternoon.  Mom actually left for Virginia to attend two weddings that morning, so we didn't get to see her until she returned on the 14th.  Starting on the 13th I was in knitting camp (during the day) at the Village Yarn Shop in Zionsville (where I go to school).  It was lots of fun and a made a really cute purse using Fare Isle knitting.  We also made a headband out of stretching yarn and a quilt square and died yarn w/ cool aid an's  made a ball of miss-matched  yarn by tying ends together as well as taking a feild trip to a local alpaca farm.  Mom left for DC again yesterday.  She'll be back Tuesday.  This week, as my parents and I decided yesterday, I am going to theater camp at the old milk building (where I got my piano) to preform Alice's Adventures in Wonderland.  It is fun, but the version we are doing is written for 40-80 people to preform, preferably on the upper end.  There are only 18 kids signed up for theater camp.  I am Baby's Breath (the flower) but play the role of Gladiolas, Roses, Impatiens, Shrinking Violet and Pansies, as well as Baby's Breath.  Kind of crazy, but we are short 62 actors and actresses.  I don't have a camp next week, yet.  I did only scedual this one yesterday.  But I hope to get back into the habit of blogging as soon as I can find time to read more books.

Mitochondrial Diseases, A Little About Me

This is Mitochondrial Disease Awareness Week and I thought I would tell you all a little bit more about the disease that is a part of who I am.  If you are a person who likes a formal definition this one from  the United Mitochondrial Disease Foundation is pretty good.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.

Mitochondrial diseases can affect people differently.  For me my muscles are impacted so I use a wheelchair and a computer, I have less endurance and energy than other kids (but still plenty to be a kid).  I have problems with my lungs that I take medication to manage (I needed oxygen before, but not right now).  I have to be careful about temperature and getting enough to eat and drink so I have lots of cardigan sweaters and water bottles. And I can have serious medical issues pretty much any time.  My brother also has Mitochondrial disease and many of the same issues, but some differences.  For both of us it has been this way all our lives and although some parts are YUCKY and not pleasant they haven't stopped us from having mostly normal lives.  We go to school and have friends and hobbies.  We pretty much lead normal lives.  Mitochondrial disease is not something that a lot of people know about, so I get excited when I find a book like A Wind in the Door by Madeleine L'Engle.  I'm optimistic that life will imitate the book and we will find a cure for Mito.

Did I get an E-Reader?

A while ago I posted to get input on if I should buy an E-Reader.  I got lots of input from several readers, thank you!  So, what did I do?  Drumroll please............I speant my money on Kaya, an American Girl doll.  As much as I wanted an E-Reader, I wanted the I-Pad the most and it was way too much money.  So I decided to wait on an E-Reader for around  a year and get a doll for now.  I am 10, so I like dolls and American Girl dolls are great.  In case you didn't know they are all histrorical characters with thier own books.  And even though she is no E-Reader, she is pretty!

School Has Started

My parents thougth this was funny and fitting, but I did have one amazing summer and blogged all about it!  Thanks for reading!

I had an Article Published!

Recently, an author/e-friend of mine asked if I would be willing to contribute a short article to an online newsletter she publishes.  "Talking Story" is the e-newsletter of authors, Joyce Moyer Hostetter and Carol Baldwin that, "discusses books for children and the process of writing, publishing and speaking for children."  I of course said yes (I mean how cool!).  I have to admit I struggled with the tight word limit and had several drafts of the article. My article is in the August Issue which focuses on Using Humor in the Classroom.  I hope you check it out!

Grand Champion, Nuts about Newbery

This past week was the 4-H Fair in my county.  I was very busy with project in computers, self determined, sewing, scrapbooking, miscellaneous crafts and showing my pigs and sheep.  Everything did well but my biggest success came from books!  My self determined project was about the Newbery Award and it won Grand Champion (the highest!)  and my computer project was about blogging, it won Reserved Grand Champion and was also selected to compete at the State Fair (where it got a Blue).  All of this was very exciting but also super cool because it got more people to learn about and get interested in great books! 

Lois Lowry

I have been smiling so much this afternoon that my mother is worried my face will hurt.  I got to go hear Lois Lowry speak at the the Glendale Branch Library in Indianapolis.  She spoke for about an hour about growing up and some of the inspirations for her books.  It was great, then she stayed and signed books.  Thank you to Kids INK for making such a great event possible!  And thanks to Lois Lowry for spending her Sunday afternoon in Indiana!

I Interrupt this blog….

This is not a book review post, but I wanted to share some updates. A few readers have been asking for my list of “favorite” Newbery’s. My plan is to rank them in order of preference after I get all the review posted. So stay tuned for that. In the mean time if you might be interested in the Allen County Library list, http://www.acpl.lib.in.us/children/newberyranking.html; they even let me give input on where When You Reach Me belongs.


Right now I am reading possible contenders for next year’s Newbery. I wrote a grant to my local library and they are letting me host a Mock Newbery event next December. If you have suggestion for books I must consider, PLEASE let me know! When I wrote the grant they asked me to hold a Newbery program in August as part of the Summer Reading program. I am excited to talk about Newberys, the fun of reading them ALL, and reasons kids can find great books from the “Newbery shelf”. If you have any advice for this talk PLEASE share!

Finally, I am counting down the days to the ALA conference; I am so excited and can’t really believe I get to be where that many authors, illustrations, librarians and booklovers are in ONE place. Did I mention I’m really excited????

Ok, book reviews will return with the next post.

More About Me

A few readers wanted to know more about me.  Here is a little bit more information.

If you ask my grandmother, I was born five hours too late; I was born on March 25, 2000. The day my mother went into labor, my grandmother had to fly back home to Virginia. My parents were concerned about my health, because my older brother, Matthew, was also a very sick baby. It took awhile to figure it out, but I also had Mitochondrial disease. Even though this meant I had a lot of medical problems, my family was thrilled to have me, and they report I was still super cute.

While I was a baby, I had a monitor and an oxygen tank. Just to annoy my mom, I liked to pull the oxygen off my face and set the monitor beeping. During my first few years, I had LOTS of people coming to my house to give me speech therapy, physical therapy, and occupational therapy. When I was six months old, I had my tonsils taken out for the first time. I scared everyone by reacting to the anesthesia in a weird way. I almost died.

When I was three, my parents applied me for a program called Super Saturday. They thought that the Imagination Movers division best fit my interests. Super Saturday was the start to all of the extra enrichment programs my parents signed me up for. In 2003, I started preschool at Little Lambs Nursery School. I LOVED it there!

I started Kindergarten at Stonegate Elementary School. At Stonegate, not only have I had great teachers, but I have also been able to participate in other enrichment programs such as Chess Club, Spanish Club, Ambassador’s Club, Spell Bowl, Math Pentathlon, and Choralaires.
Once I started reading, I have hardly ever stopped. An example of that is the fact that I have read five books in the past six days. In October, I started keeping a blog about a project I am working on, reading all of the Newberys before middle school. I like reading because it gives me a chance to escape from the real world into millions of other, imaginary worlds.

In third grade, I started a program called 4-H. 4-H is an enrichment program where children can take different projects and learn about things that interest them. During my first year I took sewing, scrapbooking, self determined, pigs, sheep, and computers. I was very successful and got a blue and an honor group for computers, a blue and an honor group for self determined, a blue for scrapbooking, and a blue, an honor group, a champion, and a reserve grand champion for sewing. My sewing project went on to state and got another blue.

Throughout my life, I have still struggled with Mitochondrial disease. In first grade I started using a computer instead of writing and a scooter instead of walking. Over Christmas break in third grade I had my second tonsillectomy (a surgery during which your tonsils are removed). The only good things about having surgery over Christmas are that you get to eat a lot of popsicles and no one else is there. Having Mitochondrial disease is not fun, but it is part of who I am and I have learned to deal with it.

So far my life has been wonderful. In the future I am looking forward to all of the things that I have left to learn in life. I am not sure what my career will be when I grow up, but some possibilities are an author, a mathematician, or a teacher.