What We're Reading in January- The Crown's

This is the first time we are doing this!  Excited to link up with other families and see what everyone is reading!  We do so much reading as a fam and love to find new books to try!

Aidan:
*Pee Wee Scouts: Cookies and Crutches
*Of course he always has all his animal resource guides handy
* Yu-Gi-Oh rules and game instructions (has to stay on top his game!)


Brooke:
*Purplelicious and Pinkalicious are still favs
*Still loves her Fancy Nancy and Gigi books.

Family:
*The Story of Mary McLeod Bethune: She Wanted to Read (I read as a child and we are enjoying it together.
*Wackiest White House Pets (Funny and very interesting! Makes learning about presidents interesting!)
*Usbourne Children's Picture Atlas (slowly working through this)
*Step into the Bible (family devotional)
* An Addy Mystery: Shadows on Society Hill

Mama C:
*Hidden in Plain View (very interesting)
*Not a Fan (liking this and it is an easy read)

We have had lots of good library books this month too!  Lots of books on presidents!  Also a cute one about a honey bee farmer in New York City. 

Welcome to the World Story

Today was another blessing as we celebrated Brooke's 7th Birthday!  It is so hard to believe!  When I look at her now, I do not just see my little baby girl.  She is getting so tall.  Her smile shows grown up teeth pushing the baby ones out of the way.  Even her spunky attitude has become...well...more!  Sometimes I wonder if we are running our own broadway production.  This year really has been a great year for her!  Brooke feels so much better.  She still struggles with headaches, but knows now to just chill when they come on.  She has other health issues that will be a lifelong battle, but she is strong and deals well with them.  This morning, like every Birthday morning, I relay her birth story.  I want all my kids to remember how special that day was in our lives!  She smiled as I started.  So here is Brooke's Welcome to the World Story.

I woke up on Sunday, January 29.  Brooke was not due until February 16.  But I felt funny that morning.  I did not feel like getting Aidan ready for church on my own.  And Tim was off to work already.  I called my parents.  They came over and took me to church with them.  I remember on the way we went over a set of railroad tracks...pure torture.  We headed to Bob Evans for a quick bite.  I remember I ordered the Spinach Strawberry Salad.  I kept thinking, "Eat as much as you can in case your labor is as long as Aidan's!"  My mom knew I was not doing well.  So they took me home, and took Aidan with them.  I tried to go lay in bed but kept getting up to walk around.  I was determined to not spend 26 hours in labor with this child!  And I was not going to spend all that time in the hospital.  So I kept eating, walking, and trying to take my mind off of it all.  But finally I told Tim we needed to go.

We arrived in ER and waited for them to transport me upstairs.  A sweet lady came over and squeezed my hand.  She said, "You will be alright!  This is normal."  I smiled up at her.  I was really bummed because my doc was on vacation.  Another doc was filling in who I did not know.  The nurse came in and informed me I was 7cm.  She said, "There is no time for an epidural."  I grabbed her hand and said, "Oh yes there is!  I need one!"  I guess I was adamant enough because they gave me one.  And it worked!  The on call doc was amazing!!  He even let me help deliver Brooke!  Thankfully my delivery with Brooke was at another hospital than Aidan.  It was much more private. It was only the doc, nurse, and Tim in the room.  From arrival at the hospital to delivery I am pretty sure only 4 or 5 hours passed.  Much different! 

My girl has not slowed down!  She still keeps me on my toes.  I am thankful to be her mama.  I am thankful to watch her grow into the lady she is.  Tonight Aidan asked if they could stay up late and play games.  Brooke chimes in, "You know it is my Birthday mom."  Yes it is!  Happy Birthday Bug!

Hit "Pause"

Today was an amazing day!  I sat and watched my bug cheer!  I never thought this would be something she would do.  After her Chiari diagnosis we were told all the things she could not do.  Even though her little heart dreamed of dancing, we tried to redirect her with art and music.  But because of some amazing docs, my girl was able to cheer this year.

I sat today as she went out to do her first cheer.  Brooke had the biggest smile on her face!  All the girls looked so cute, and I felt beyond blessed to see my girl out there!  I watched her as she chanted out the cheer.  At the end she struck a little pose and smiled so big!  I wanted so bad to hit **PAUSE**, run out on the floor and hug her so tight!  I was proud and oh so amazed!  The tears of course welled up as I looked upon her!  How thankful I am that she was given this chance!

Of course I could not push pause, and life quickly swept on.  But as I sat there I kept thinking how amazing it is to be watching her!  If Tim and I had not searched for the right doc, this would have never ever happened!  If we would have stayed with the doc who first gave us the diagnosis, or even with the next 2 we saw...Brooke's story would have been very different!  Number one told us she was fine and to just put her on seizure meds.  My heart knew this was wrong, so we pressed on.  Number 2 and 3 both claimed they were leaders in Chiari, and were at reputable hospitals.  But they wanted to jump right in and do surgery.  Again, my heart said wait!  I researched and learned all I could about the disease my daughter suffered from.  We found our amazing Dr B and never looked back!

I tell this story because the difference for Brooke was being able to cheer today and not be able to cheer today.  Number 2 and 3 wanted to cut her C1.  But Dr B saw she had Basilar Invagination.  He knew if her C1 was cut she would have instability.  Which in turn would probably lead to a fusion surgery.  He told us about a special kind of surgery.  He made 2 incisions and went around the C1, he never cut it.  That made all the difference in the world to my bug!  Yes she has cranial instability, but for now it is managed by wearing a collar once in awhile.  She may need a fusion in her future, but hopefully way down the road and maybe never!  If we had gone with # 2 or 3, fusion would have had to happen much sooner.  My girl would not be cheering! 

Now I know every patient is different.  I also know outcomes are not always the same either.  And of course this is all just my humble opinion.  But this is why as a Chiari mom I am so adamant that there needs to be more research!  Docs need to quit saying they are experts when they are not!  And we as parents HAVE to be our child's advocates!!  Research is what expands minds and builds new treatments.  Docs who support this research are not close minded and willing to accept they may need to learn something themselves.  Please I implore you as parents, help your children to have the best success they can!  Seek out wise treatment options and docs who will support Chiari research!  I pray every day that there will be more success stories and less heart breaks!  We as parents are on the front lines and have to fight this battle for our Babes!!!  So press **PAUSE** and go learn more about Chiari and how we can fight this thing!  Because sadly we can never hit the REWIND button. 

Fail!

So sometimes we fail.  Sometimes life does not work exactly how we envision, and we have to start over.  I have found this many times in my life.  Starting out in 2013, I have found this over and over again.  I think I had big expectations for myself this year.  I was feeling pretty awesome, and thought "I think I will take on the world!" in a matter of speaking.  Sadly I must report my feelings of grandeur are fading fast....I am taking a step back and trying to figure out my place in 2013.  Let me explain....

One of the things I envisioned was this new wonderful world of multiple blogs.  Oh how wonderful it would be to have a blog for family, one for Brooke, and one where Aidan could take the lead.  It seemed perfect.  I am finding- it is impossible!  What was I thinking!!! I can barely keep up with one blog!  So completely ignore the last post on here.  Lovely Little Ladybug will stay the same.  We will add more family stuff, more chiari awareness info, and I am still dream of adding Chiari Interviews and awesome women tributes.  But it will all be collected on this site.  I am still helping Aidan with his blog.  Although complicated, he loves the idea.  So good-bye third blog!

Another thing I have been pondering is a job.  It has become quite clear that I need to find some kind of employment.  This becomes tricky with the kids at home, and hubby's crazy work schedule.  So of course my "creative" mind has taken me all over the map.  Mostly to unrealistic dream worlds, and now back to good old solid earth.  I am hoping to find something I can do from home.  I have been sewing away trying to open my Etsy shop.  So far I am still floundering to pull it all together but hopefully very soon. 

Honestly I think most people hit brick walls and need to find ways around them.  But for some it is way more interesting to run full force into the wall, and then try as hard as we can to climb the wall while wearing flippers.  What may you ask does this mean?  It means that some of us never really learn to slow down, ponder things, and then move forward.  I suppose there is always time to learn....maybe some day I will! :) 

New Blogs!

The past few weeks, I have been setting up 2 new blogs.  This may seem crazy, and well I am a little crazy.  I was very attached to the Lovely Little Ladybug blog.  I really did not want to loose the name, or the idea behind it.  I started for Brooke...to educate on chiari, to share her story, and hopefully help a few people.  So this blog stays.  It will change a little though.  Our family has changed since this blog started.  We have found out that Aidan also has Chiari and also Ehlors Danlos.  I was also diagnosed with Ehlors Danlos.  We have found out we need to eat differently as a fam to help our various conditions.  This led me to creating a new blog that focused more on our fam.  But Aidan was feeling left out!  He wanted to blog too!  So we made him a blog.  Below is a run down of how all the blogs work! 

Lovely Little Ladybug:
**Will still give updates on Brooke.  Medically speaking she is doing fairly well.  But Chiari is something she will deal with all her life.
**Will provide interviews and info on Chiari.  As a family we want to educate people on Chiari.  We also want to share others stories.  Brooke will be interviewing a fellow Chiarian once a month.  She is so excited to start this! 
**There may be some other things we will add too.  Hope to add some Video Links, educational resources and some stories aimed at helping kids travel down this rough road. 

The Adventures of Bug Boy:
**Aidan will be posting recipes that we try as a fam.  He will critique the taste, ease of preparing, and maybe ways to spice up the recipe!
**Aidan will be posting recipes of his own creation!  Watch out food world!
**As you can tell from the title, Aidan loves BUGS!  He will be posting pics, and info on various bugs(insects) he discovers.
**Aidan has many passions and plans to use his blog to share them!  But he wants to hear from others too.  He is hoping to have some other kids guest blog.
Crazy Courageous Crowns:
**Our new family home.  Will post here about fam updates.
**Want this to be so much more than just us!  Excited to have guest bloggers, interviews with amazing women, and maybe some men too! ;)  Can't wait to hear so many new stories.
**We have found that our fam has to eat certain foods to help with our various health issues.  But one thing most know about our fam...we do not like boring food!!!  Excited to try some new recipes and adapt them to fit dietary needs.  Even more excited to share these with fams who may have the same needs.

Een though this may seem a bit crazy...we hope you will join us!  Pop over to Aidan's blog or the Fam Blog.  Add us to your google reader, or follow by email!  We hope you will be part of our journey!  

Dreaming a Dream

The Crown fam is not big on new year's resolutions.  Like most people, we have found we make them and never keep.  But we love to dream over here.  Sometimes a little too much dreaming goes on!  Like at any one moment my mind probably has 3 or 4 different scenarios playing.  Most of the time I just move on to the next thing.  But some scenarios replay over and over, year after year.  These are my dreams.  I clutch to them with great passion.  I know they most likely are just that, a dream.  A dream though is a powerful thing!  It fills your mind with happiness when the gloom of the world starts to seep in.  So I encourage my kids to dream, and dream some more. 

One recurring dream for me is dance!  Some of you may know I started dance when I was 2.  My first teacher was named Lolly.  For me, dancing was one of my best memories!  In high school, I started teaching dance.  Then in college, I taught dance from my parents house.  I loved it!!!  But of course life got in the way and I had to leave dance behind.  When Brooke was little I taught again for a short time.  I have tried to teach over the past few years, but for some reason it never quite worked out.  Lately I have been dreaming this dream again.  I pull out my old pointe shoes and run my fingers over the soft satin. I pass rental properties and dream.  I dream about cleaning out our upstairs and turning into a studio.   Not sure if this will ever work out, but it is fun to dream.

Another recurring dream is writing.  As a child, I filled notebooks.  When I ran out of story ideas (which was rare), I would ask my mom to think if an idea.  Then I would go write the story to go with it.  She started a box of story starters for me.  I loved to pick new ideas and run with them.  I now have binders filled with my stories.  When college rolled around, I dreamed of being an English Professor.  Sadly I allowed my mind to be swayed and chose Psychology instead.  But with this blog, I have found my passion for writing all over again.  I have to laugh when I hear people say, "Why would you want your life, your stories out there for all to see?"  Well why not?  If my story can help others, or just create comic relief, then it is worth it.  I might ask, "Why would someone want to run a marathon just to be told good job?"  I am sure a runner would give me a hundred reasons why they do it.  Most of those reasons might not make any sense to me.  But for them, it does!  For me writing does!  And quite honestly people choose what they read.  I do not read blogs about hiking in the outback, or changing a spark plug.  So if my blog is of no interest to you, I completely respect that!

All of my dreaming though does knock me back to my current reality!  Our fam has been a one income fam for a little while now.  We have been blessed to make it through.  But now that I am feeling a little better, I need to step back up to the plate.  As much as I would love to be a ballet teacher or a famous writer, reality is I need something now.  Life is not gonna wait for me to jump on the dream boat.  The kids and I have been discussing how we can help each other to pay for medical bills and trips.  This is a reality for us, and we as a fam need to figure out how to make it work long term.  My kids are so cool and creative.  Aidan was like, "Let's open a store!"  Dreamer!  But this dream is obtainable.  We have been working over here to create a Crown Fam store.  We opened an Etsy Shop.  It is not ready yet, as I am hitting some technical issues.  But it will be soon!  All of us will be creating things to sell in this store!  All of the money we make will be used for past and future medical expenses.  Of course, Aidan wanted a little cut on the profits.  Brooke quickly chimed in, "Now Aidan we need to remember not to be greedy!"  :)

This leads me to our next big Dream!  We are changing our blog around a bit!  Lovely Little Ladybug will stay the same.  But the difference...it will only be Brooke's blog.  It will be used to update on what is going on in her journey.  She also wants to have a Chiari Kids Corner.  Once or twice a month she will interview another child with Chiari.  We both feel it is so important for others to hear how brave and amazing these kiddos are!!  And to keep raising awareness for Chiari.  Aidan is so excited to start his own blog!  He will be doing recipe reviews, posting pics of his ongoing insect projects, and just blogging about his adventures.  Of course Mama needs a place to keep writing!  So I also will be starting a family blog.  It has been on my heart to share incredible stories of women I have met and some I have only heard of.  I am so excited for all of this to happen!  All our blogs will be linked, somehow!  As you may know I am not the most computer literate person, but I am learning! 

I think by nature most of us our dreamers.  From an early age, we are sometimes admonished for this.  Told to fit in the typical mold.  To not think big, think normal.  I challenge you this year to dream!  Even if it is a dream you just hold close to your heart, dream it!  I know we are!