Ladybug Secrets

Ladybug Secrets:
Don't let the small stuff bug you. And Spot new opportunities.

Saturday, January 26, 2013

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. 


  1. That is so wonderful! I got teary eyed reading this. Way to go, Brooke.

  2. Thank you so much for sharing your feelings and candor about your observations regarding your family's experiences and the reality for most of us afflicted with Chiari and related disorders! Chiari diagnosis is far from simple! So many "stars must align" for a better than average outcome. Much is stacked against living a near-normal life. We all remember those initial days after diagnosis. We clearly remember the fear that lingers many years later ... But somehow we found strength to trudge forward, searching to find the best outcome for our family. Fear controls, binds, stifles us for the most part. Some use fear to push forward while others succumb to it's power. Second, third, and even fourth opinions from Chiari specialists are an amazing tool every Chiari family should utilize! I believe God gave me the strength to seek out the best care for my family. If I had to do it all over again, I would do the same without question or hesitation! Why some tempt fate, not heeding the words of those who've "been there, done that" is beyond me. As an advocate for those afflicted with Chiari, I understand the helplessness we feel when our suggestions for second and third opinions fall upon deaf ears. Some choose to make different choices out of fear without considering options ... Some with devastating consequences. It will always be a hard pill to swallow, for sure! Again, thank you for your amazing words! Sending oodles of hugs and love, Nic ღ

    1. Nic
      Thank you for being my sounding board in the first days after diagnosis! If it had not been for you and Julie Carter, I would not have known to keep searching! It was a wonderful gift to have you both to listen and lead! I only pray that I can also do this for others! Bunches of Hugs Back!