Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Wednesday, March 27, 2013

A mess on the outside

We were out to dinner with family and friends at the Olive Garden. Jodie was at the head of the table in her powerchair. I was sitting by her, trying to tuck my walker between out of the way as I could.

An older gentleman came over and started talking to us. His hat said "2nd Ranger" on it and he used to parachute out of planes, "The most fun you can have without getting naked."

He asked Jodie what she had...then what I have. She told him cerebral palsy. He told us that growing up he had a friend who was like me..."A mess on the outside, but beautiful on the inside".

Hmm. An interesting way to put it!

Offended? Na! Older guy, very kind words. I think he probably underestimated us, not realizing that Jodie and I work, have a home, a van...and that the seventeen year-old at the table was ours.

He asked if we knew Jesus. "Yes we do!"

He gave Jodie and I each a golden medallion. One side reads: "America, the land of the free, only as long as it remains the home of the brave!"

The other side reads: "For God so loved the world that He gave His only begotten Son that whosoever believeth in Him should not perish, but have everlasting life." John 3:16.

When this guy was leaving, he stopped by and told us what a beautiful family we all were. We thanked him.

When the bill came, the manager came over and thanked us for coming in. She then told us that someone had anonymously paid $100 toward our gratuity.

Eric says the guy has spoken at his school, but he cannot remember his name. My Googling fingers failed to find him.

2nd Ranger guy, from the mess of me outside and whatever beauty my Lord affords me on the inside, thank you!

Monday, March 18, 2013

Good news...dumbfounded

Jodie had a doctor appointment the other day with a neurologist.  A month ago Jodie went to see this doctor for the first time so he could refer her for an mri.

Last summer, our eye tor picked up that Jodie was not seeing in the lower portion of her vision.  It's tricky to understand.  When you look straight ahead, you can see the floor in your peripheral vision; Jodie cannot.  Jodie has been wearing bifocals, but now we know that she can't see out of the lower lens.

This loss of vision probably happened subtly over the course of years, so slowly that Jodie did not notice the change.

After a couple field of vision tests over a few months, our eye doctor thought that an mri might be in order to make sure there was not any growth producing pressure in Jodie's head, on the optic nerve, causing Jodie's loss of vision.

Jodie saw the neurologist last month.  He did a few simple tests to witness that Jodie was not seeing in the lower part of her peripheral vision.  He then ordered that an mri be done.

Jodie had the mri three weeks ago.  A week after, she called the doctor's office to see if there was any news regarding the mri.  After  few call backs, the office acknowledged they had the mri results, but that Jodie would need to make an appointment with the doctor to find out the results.

An appointment was made.  Two weeks.  It bothered us that they would not tell us the mri results over the phone, and would make us wait two weeks to tell us.

If there was anything bad in the mri, they wouldn't make us wait two weeks to find out, right?  But, if the mri was clear, they would tell us over the phone, or send us a note, wouldn't they?  We were confused.

When Jodie first went to see this doctor a month ago, her mom and sister took her.  The doctor's office has a parking garage.  Our van is too tall for parking garages.  This time I drove Jodie to the office and found street parking with room in the rear for the lift.

Jodie's mom and sister met us at the appointment.  Jodie's sister and I went back with Jodie to meet with the doctor.

To our amazement, the neurologist acted as if he had not seen Jodie before.  He did not seem to really know why we were there.  We asked for the mri results.  Oh yeh...those.  The new mri showed no change over the mri Jodie had done in the 90's.  He seemed surprised that we did not already know the results.

We asked about Jodie's limited vision.  He proceeded to test Jodie's peripheral vision himself.  He asked whether Jodie really did not see down there, or just did not see in color.  He did not have any answers as to why her vision was limited, but that he could refer us to a neurological optometrist.

We left dumbfounded.  A clear mri was good news.  Reasons for Jodie's limited vision still elusive.

Should we be concerned?  Who knows...