I found this poem, written by Cindy Nicholson, which also has Chiari. It is wonderful and tells you exactly how Wesley feels.
Like a thief in the night you stole my life from me
You're always hiding in the dark, come out, where I can see
After years of suffering, I finally know your name...
Now that I know, my life will never be the same,
That fateful day I'll never forget which wasn't too long ago.
You caused my head to explode and my heart was pleading "no"!
Symptoms can be there for years 'till you raise your ugly head,
You even steal my sleep away; I no longer sleep in my bed.
The pains in my head sometimes stay all day.
Please learn to love me and take the pain away.
Sometimes you are patient, just waiting to attack,
Where will the pain be this time? In my head, my neck, or back?
The pain in my back is like a twisting knife,
Take what you want but give me back my life.
You try so hard to visit each day,
Causing me pain, keeping my smile away
Right now, I feel alone, even though I know you're there
Lurking in my head, causing more pain for me to bear.
Life is not about suffering, but you give us pain each day
We, Chiarians together, will fight you all the way.
How can Doctors help us, if they don't know what you do?
We are not hypochondriacs, our problems are you!!
When will all the pain and suffereing end,
Please let me know, so I can be your friend.
Why do you hurt me so bad, can't you learn to love me,
Just take the pain away and set me free.
Chiari, if you could grant me one wish, all I ask of you,
Is that you haven't passed this curse, onto my babies too!!
I feel sad today. It is Fathers Day and Wesley has a terrible headache. My heart breaks for him. Tomorrow I am going to start sending the CT Scan and I want to do a write up of Wesley's whole story to send to new Dr.'s. So that is my next goal. If anyone comes across my blog and knows of a surgeon that specializes in Chiari, shunts, or both, please please let me know. Texas or Oklahoma would be best, we just do not have the money to be traveling the world. I am going to call the one in Austin on Monday and find somemore details. Just feels like there is not much hope, but I have to hold on to everything I can and not give up.