We found out that Fayard's condition was not cosmetic, it was the real thing and he would have difficulty walking, at least.  He's never really walked, only in his standing frame and as one doctor told us:  "You can put him in metal up to his armpits but I don't call that walking."  Sounds cold but it's true.

So the year passed during which time some good things happened:  I got laid off from my job.  It really was impossible working.  I got unemployment, but I missed some very good friends at work. 

Something else that was happening was that I realized Fayard was not so fragile.  He got sick and spiked high, high fevers sometimes.  He had to be hospitalized quite often when he was little.  At home I treated him kind of like the china people in The Wizard of Oz, *if you break us we can be fixed, but we are never quite as pretty again.*  Just making sure everyday I did what the doctors told me, watching for signs of infection or hydrocephalus.  But when he was hospitalized once for another UTI, Odie and I went alone to visit him in the hospital.  She was 14 and Fayard about 6 months.  We had brought him a bunch of toys to play with.  He smiled.  He played peek-a-boo and patty-cake.  After that having fun with Fayard did not seem like such a strange idea.

I'm not going to write much about Thusband in this post, but two memories of him stand out during this time.  When Fayard was about 8 months old, he had a terrible fever for days.  The doctors said he had a UTI and gave him an injection of antibiotics and said if he was not better the next day he would have to be admitted to the hospital.  So that night Thusband and I could not sleep wondering if his fever had gone down so he brought Fayard into our bedroom, Fayard in his yellow onesie with a pacifier who looked so comfie in his father's arms, and I could see how much his father loved him.  He still had a fever and had to be hospitalized.  I remember another time when Fayard was well and his father was playing a record of Carly Simon and James Taylor singing Mockingbird and Fayard dancing on his butt so happily.  Thusband tried at first, and then he didn't try at all.

When Fayard was about 1-1/2, I had Addie, my third and final daughter.  Sex is a great stress reliever, that's my excuse.  I had to have amniocentesis to be sure she would be okay, and she was.

Then we started taking Fayard to Shriner's, the best hospital ever for us.  We met lots of very nice people there.  Rita and Martin, two elderly people who were foster parents (but just like real parents) to a little boy Fayard's age named Jonah.  They are the best people I know and they helped me immensely during that time.  Jonah and Fayard would go to physical therapy together and learn to put themselves into their braces and get out of them, and to go from sitting to standing using forearm crutches.  They were little kids then, less than 2 years old.  It was amazing. 

Sadly, Jonah died at about age 9, from a ruptured aneurysm after a shunt replacement procedure.  It was a devastating shock for everyone.  He was the picture of health, always.  His parents loved him so.  They still go to Shriner's functions and are two people I admire very, very much.  Fayard had his shunt replaced shortly after that without complications.  You want to feel lucky after that or grateful, but it's kind of hard.

We did get 2 wheelchairs for Fayard eventually and that was unsettling at first.  One was small and orange and like a little car.  Addie would wheel around in it sometimes and Thusband did not like that.  I was shivering on the inside wondering how you contained a child in a wheelchair.   He's in the car, he's in the house, he's on the pavement, he's on carpet, he's on linoleum, he's in the store, he's on the grass.  A lot of planning and forethought went on in my mind maneuvering him around in his wheelchair.  

It was foreign and weird at first but after going to Shriner's for a while and seeing the things that some children went through, a wheelchair was not such a terrible thing anymore.  What I could not get used to though about Shriner's was that we might go there for a visit or a checkup and Fayard would end up staying for days for orthopedic surgery of some kind.  That freaked me out.  But they would make you comfortable, making sure there was a bed for a parent in his room, gave you food vouchers.   The playrooms and movies were fantastic for making children and parents feel relaxed and at home, not bored or lonely at all. 

Kind of a strange thing happened after having the first wheelchair for about 6 months or so.  We had to take it back and get a new one (children grow out of wheelchairs, I didn't know), and watching them wheel away his first little yellow wheelchair was like watching part of Fayard be wheeled away. 

Things Fayard Loved When He was Little

Abbott and Costello
Macaroni and Cheese
Zena, The Warrior Princess
Laurelhurst Park
Talking Dirty
Marvin K. Mooney, Will You Please Go Now
Sesame Street
A play of Rumpelstiltskin wherein the Princess asks "Is your name--  Macaroni and Cheese?"  God how hard he laughed at that.
The Sneetches and Other Stories (the green pants were a favorite)
Powell's Books
Halloween
His family
Fishing
His cat, Gina
The Park
Having company
Going skiing

Things Fayard Hated When He was Little

The Wizard of Oz (he only recently watched it the whole way through)
Stairs
Doctors
Little Bear
Going home from the park
Fighting with his sisters
Staying home

People Who Helped Us A Lot When We Were Scared

Odie, who showed me how to maneuver around SE Portland when I was afraid to leave the house.  Who also made me laugh a lot.
Aunt Phyllis, my mother's sister, who also got me out and about with an infant, a child in a stroller (before the wheelchair)  and a toddler and made me take the city bus with her.  It was not fun but it made me brave.
My friends at work, Dorcas and Peggy, who were so sweet and patient with me.  When I asked Peggy what if Fayard became a mama's boy, she said so what.  Indeed. 
My sister-in-law Teresa, who taught me how to drive. 
My sisters, Phizzie, Paula and Jeanette, who came to visit and stay and loved Fayard so much, and who I had so much emotional support from. 
My Cousin Scott who rented us a house in SE Portland for a very reasonable rent and lots of space.  Sadly, it had lots of stairs and we could only live there 5 years. 

The title of this post comes from a song by Everclear called Normal Like You and it ends like this:

I will never be normal like you
You walk around oblivious to everyone
I see you walking slow and simple
Underneath the big black sun

Tell me why you want to be blind
I don't want to be normal like you
I know now
Everyday I get closer to the place inside
Where I can be complacent

Yes I get closer
To the place where I can be sedated
Yes I get closer
To the place inside where I can be normal too
Where I can be normal like you
Maybe normal like you
I can be normal like you

It may not apply in any real way, but it doesn't make normal sound all that great either.  Now Fayard is struggling because he is 18 and has never had a girlfriend and thinks a lot about sex and his future and that is difficult for anyone.  But of course Shriners will help with that too.  They have an adult sexuality program for people with disabilities, all free, of course.  There is so much I left out of this story, but maybe I'll add bits and pieces as I continue my blog.   And I will put up photos this week.