Monday, October 25, 2010

The Journey

Twelve years ago this month, my husband and I went through a horrible parental experience. Many of you have also suffered through it. The initial "something's wrong with her" led to "we need to call the doctor" which led to "maybe a brain tumor?!". Like other parents of IH kids, we waited to see doctors, waited to perform tests, and waited to get the results. We were some of the lucky ones and received a diagnosis after only a couple of months -- Pseudotumor Cerebri (better known as Intracranial Hypertension). For those of you that don't know what it is, IH is a rare neurological disorder in which too much cerebrospinal fluid is squeezing the brain. It causes a variety of symptoms such as intense headaches, nausea, vision loss, and more. There is no cure. For many patients with IH, it can take years to get a diagnosis. Isn't it sad that two months of intense fear is considered a short time to wait for a diagnosis? We've learned a lot during the past eleven years.
The journey of raising a child with a disorder is not the journey for which we signed up. We were supposed to have a little girl that wanted to be a ballerina. Instead, she became the little ballerina that tried, but couldn't get off the floor to dance. We were supposed to have a little girl that was thrilled to attend school and gobble up the knowledge as fast as it could be thrown her way. Instead, she was the little girl that could barely drag herself out the door in the mornings because the pain was always there to some degree. So life took a detour for us on our journey. That's OK! We took the path less traveled and are still experiencing the ups and downs of this path.

As parents of kids with IH, you've been sent down a different path also. You will learn medical jargon to a depth that you never expected. And understand it!

You will become a diuretics specialist.

You will become proficient at shunt technology and be able to discuss shunt types, brands and programming.

You will become an encyclopedia of medicinal side effects.

You will learn what an IEP is. You'll be able to walk the walk and talk the talk with the school system.

You'll see the anguish of having an invisible disease which nobody else understands and feel every social pain that your child experiences.

You will learn all this and become a stronger person along the way. You will become a true advocate for your child.

You will also learn to appreciate the small things in life that we all too often forget to enjoy.

You will celebrate the triumphs and persevere through bad moments.

You will not be alone. Throughout it all, will be helpful people along the way. You'll discover new friends (and possibly not so great friends). You will learn to ask for help when you need it and lend a hand to others when they are struggling. It's a long journey -- enjoy the good moments along the way and forge on through the bad moments.


  1. Wow..That is all I know to say.We are are all just lost right now.Our daughter was just diagnosed two weeks ago.She is 4

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