So Mad I Started a Blog
  • All Posts

Just Follow the Yellow Brick Road

9/24/2012

5 Comments

 
Some kids get sick or hurt and within one doctor's appointment they are diagnosed. Many books I've read have said that is the worst moment. You hear that your child is not typical or healthy, and I'm sure it's shocking and heartbreaking. We have never had that moment. We have had doses of bad news over time. But no diagnosis or clear path ahead. 

Jude has gone to the University of Iowa Hospitals and Clinics 25 times in the last 25 months. He is 43 months old. 
A list of things Jude hates about going:
  • doctors, med students, residents, fellows, nurses, etc. 
  • waiting rooms (they are not lobbies so let's not kid ourselves)
  • exam rooms (they eye ones are about 3 feet wide and 10 feet long, great for a kid with bad balance)
  • white coats
  • scales
  • blood pressure cuffs
  • anyone who starts by saying, "I'm not going to hurt you"

We traded our minivan in for a Prius. For real, it gets almost 50 miles/gallon. It's pretty good when gas is almost $4/gallon. Does anyone remember filling up their moped for $0.85/gallon? I do. The first time I filled the Prius up, it clicked off at $28. I thought the nozzle needed to be readjusted. Nope, it was just full. 

When we first started going, Chris and I would fill with anticipation and excitement. We were going to see "THE" specialist this time that was going to figure out what is wrong with our Juderbug so we could help him. It was a bit like this scene:
We kept following the yellow brick road to Iowa City, waiting to meet The Great Wizard of Oz. About 12 trips in, we realized that these appointments were important, but there was no Great Wizard of Oz for us. We also kept our sense of humor. This was our Christmas Card that year:
Picture
I love this photo because it's real. Jude is screaming. The rest of us are trying to laugh in spite of it all. He has a right to be mad. From only a few months old, he:
  • Couldn't see (we think he sees up to 3 feet pretty well and has to be really close (3-6 inches) to see detail
  • Couldn't hear (6 double ear infections in 6 months). Thank God for ear tubes. 
  • Was having seizures

He was not a pleasant baby. And he still has his moments. But every day is a little bit better. 

After a failed attempt at a diagnosis in January, my sister saved the day. She said she knew a world-renouned pediatrician in Omaha that was willing to review ALL of Jude's medical records as a second opinion. We sent him the pile of papers. 

Miracle #1 - This doctor e-mailed me back and said, "Sarah,  I got through Jude's records a couple of times and have spoken to several different physicians about him.  I, with your permission, sent a Cliff Notes version to Dr. Paul Lipkin at the Kennedy-Kreiger Institute in Baltimore.  You can google it and find out about it.  It is probably the foremost clinic in the world for children like Jude.  So you should be hearing from him or someone in the near future.  Hope to meet Jude sometime.  If you are ever in Omaha headed to Hastings, please stop by.  If you have any other questions, please give me a call.  You have my cell number." I had his cell number!

Miracle #2 - I asked how we could pay him or what we owed. He said, "No worry.  Just do something nice for someone who needs it.  I am sure that you do this every day." I have tried to remember this often. 

Miracle #3 - I called Dr. Lipkin the day I started this blog. I was mad. And guess what, he called me back. He wants to see Jude. We have an appointment for Nov. 7. 

So perhaps we will still get a chance to meet The Wonderful Wizard of Oz yet. And if it turns out he's just a regular guy. I will click my heals together and know that I had the power all along. To love Jude no matter what. 
So I will end with a cinquain poem (click here to write your own):
Road 
Yellow, brick 
Driving along life 
Chris always beside me 
Journey home
5 Comments
Sharon Saddoris
9/24/2012 07:40:14 am

Sarah you are just awesome....to let all of us on the outside step inside your life, just a little, is such a gift. Love you all.

Reply
judy corkery
9/24/2012 08:19:09 am

Courage
Standing bravely
Strong in battle
Leading us forward
Sarah

Reply
Candy
9/24/2012 10:13:00 pm

I once received the most unusual compliment (at least at the time, I thought so), but now I know it most fitting. You are a lumberjack - you just keep knocking 'em down, Sarah. Keep on keeping it real, girl!

love ya,

Candy

Reply
Mariah Andrews link
9/25/2012 12:09:24 am

Sarah,

The yellow brick road is a perfect analogy and I LOVE the way you end this piece --brilliant!

I also know the exact feeling you described of finally getting to see the great and powerful Oz, and then finding out that there is no Oz. With Gus and his asthma, one Oz at the Mayo Clinic even suggested to me that he would "eventually grow out of it," which seemed to suggest that I give up and wait patiently for that to happen. What?!!!

You not only have the power to love Jude no matter what, but to keep fighting for him and for yourselves no matter what. I know you will find an answer!

Reply
Aunt CJ
10/1/2012 01:32:15 pm

Niece
Brilliant, Beautiful
Hoping, Accepting, Loving
In awe of you
Amazing

Reply



Leave a Reply.

    Author

    Sarah Corkery is a mother of three, wife, friend and marketer. 

    Archives

    April 2018
    July 2017
    May 2017
    February 2017
    January 2017
    December 2016
    October 2016
    September 2015
    March 2014
    October 2013
    September 2013
    July 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012

    Categories

    All

    Subscribe via e-mail below:
    Subscribe to So Mad I Started A Blog by Sarah
Proudly powered by Weebly