1 year ago

The date....came and went. November 28th, 2008 was our 1 year anniversary of Anderson's diagnosis. The day I learned how to spell CHIARI, the day I learned what the word meant. The day we became members of this "club" that we had NO idea existed....the day our whole lives would change.......

I can remember Nov. 28th, 2007 so vividly. It was a Wednesday....our big therapy day. He had 2 hours of therapy at the hospital. He had the MRI the day prior. We thought it would be Wednesday afternoon, probably Thursday b/4 we heard anything. As I walked out of the hospital, I pulled out my cell phone to see if I had a missed call. (I do not have reception in the hospital).

Yes, a missed call from a "blocked" caller. My heart sank. I quickly dialed my VM....heard our neurologist say..."Mrs. Mescher, this is Dr.X, can you pls call me at the office b/4 the end of the day?"

My heart sank further, my fingers were shaking as I tried to dial the number back.

I am in the parking lot of the hospital at this time, I FRANTICALLY dial the neurologist's office (at this point, I am only across the street from the neuro's office since I was at the hospital anyway!) I put Anderson (screaming by the way b/c he is tired from 2 hours of therapy) into the car. I get the receptionist at the neuro's office, tell her I am returned Dr. X's call. The woman says hold a second. I climb into the car expecting to give a # where Dr. X can call me back. NOPE, Dr. X on the phone.

GULP! Dr. X says..."Hello, Mrs. Mescher. It sounds like you are on a cell phone, do you want to call me back when you are home?" What in the #$Y$% is this lady thinking....I NEED to talk to you NOW...NO, I do not want to call you back when I get home....a) a dr. does not typically say to call them back b/4 the end of the day for a "good reason", and b) when you call back...you do not get connected to the dr right away!!!

I assure her I can hear her just fine, and I was in a parking lot, not driving my car :)

Dr. X says, "Well, I have the MRI results...we did not find a reason for Anderson's developmental delays, but we did find something else. Anderson has Chiari malformation".

Me: "Excuse me?"

Dr X: "Your son has Chiari 1 Malformation"

Me: As I pull out a grocery receipt from my purse and a pen...."Can you pls spell that for me??"

Dr X: "This was an accidental finding, he is asymptomatic, it is not like a brain tumor, you will just need to see a neurosurgeon at your convenience."

Me: "WHAT? A neuroSURGEON?"

Dr X: "Yes, I recommend Dr. Y over at Children's"

Me: "How do we know Anderson is asymptomatic....he can NOT SPEAK!"

Dr. X: "He has no symptoms"

Me: "I noticed about 6 weeks ago that Anderson is banging his head and rubbing his head like he is in pain...could this be related? Tylenol seems to 'soothe' him." Keep in mind folks... I have not even had a chance to google Chiari...just asking a question

Dr X: "No, that would be nothing related to this"

Me: "Okay, thank you".

Dr. X: "I know in the world of google you are going to go home and google this...PLS remember he has Chiari type 1...that makes a difference".

Me: "Thanks".....and you BETTER believe I am getting on google ASAP.

Completely bawling my eyes out, I try to reach Charlie...he is in a meeting...i leave a message to call me back ASAP. Next, I call my dear friend, and google expert, Kristen. I am now driving to pick up Ryan.

I tell Kristen between my sobs what just happened. She is on her computer in 1 second trying to see what she can find. First web site, first thing....#1 symptom of Chiari...HEADACHES. ummmm, and the neurologist said Anderson was asymptomatic??? UGGHH!!

I call the neurosurgeon's office the minute I get home....I tell them my son was just diagnosed with Chiari 1, and was referred to their office. (Now, I know another Mom who had to see this NSG, and she said it took her almost 4 months to be seen)....They got back on the phone and said, can you come December 1st? This was November 28th!!! HOLY #$^#%!!!

That is when it all started....in Children's Hospital Parking Lot, written on my grocery receipt, calling Kristen to google it for me.

Brings tears to my eyes thinking about this day. Our life has not been the same, obviously. We have changed in so many ways, and not by our choice....by God's choice. We have learned lessons in all of this, and we continue to do so. Patience, patience, patience.

In Thanksgiving, I am so thankful for our NSG in Chicago who "listened to us", and believed in us and Anderson. I am so thankful for the therapists that work with Anderson every week to get him strong and develop. I am thankful to our friends and family who supported us and continue to do so.

We still have good and bad days with Anderson. Today, was a hard day for me. Anderson was just so so so fussy, and so so so needy. But, 2 days ago.......Char and I felt like Anderson had the BEST DAY OF HIS LIFE, literally. He was so "on it"....so alert, so active, so happy, so great. Who knows what today was.....but, today, I was having a "I hate Chiari day". Wish I never heard that #^$%& word! But, 2 days ago....we could NOT have been prouder parents.

Anderson has taught us patience, listen to your voice, appreciate the tiny tiny things in life, love, more patience, and many other things.....he is our little warrior and we are so very proud of him! And he is so stinkin' cute too! (from his biased mother!)

As a Chiari friend wrote on her web site on Thanksgiving....I am NOT thankful for chiari, but I am thankful for my children! CHEERS Rachel!

** For those of you that remember our friend Baylie that we met in Chicago....pls see her caring bridge site: http://www.caringbridge.org/tx/baylieo/.

Baylie is getting ready to undergo her 3rd brain surgery next week. Pls pray for Baylie and her family.

1 year ago.....looking forward to next year, when November 28th with come and go and perhaps I will not remember it quite as vividly. :) I feel like it was yesterday. I can still "hear" the conversation with the neurologist in my mind. I can still "see" myself driving and talking to Kristen who was home googling for me. I can still "see" that grocery receipt in my car with the word "C H I A R I" written on it. It is all still so real and raw to me.

We are thankful that Anderson is doing as well as he is doing. There are MANY MANY little Chiari kiddos out there not nearly as fortunate as Anderson. We think of those families daily and pray for them as well.