Sunday, February 26, 2012

Goodbye Uncle Billy

Saying goodbye to a family member is one of the hardest things any of us has to do.

This past week we lost and buried my Uncle Billy. I cannot even express in words how much this has affected me.

I have spent so many years focused in my little world. My world of me, my husband, my kids and Rett Syndrome.

In the last few years I had to walk away...or more accept that they walked fathers side of the family that I kind of forgot that I had another family.

My mothers family. My Grandmother, my Aunt's. My Uncle and my cousins. The people I grew up with. Unfortunately I have no relationship with my mother and because of that I kind of let everyone else slip away too.

I came around for illnesses, surgeries, weddings and such but my monthly and reunion visits have stopped all together. Some because of my own selfishness and inabilty to forgive. Some for my own self preservation and sanity. A lot of it has to do with Abby. When I am nervous or stressed she is nervous and stressed. She is highly allergic to dogs and everyone seems to have at least one.

My Uncle Billy was 54 years old. I hate saying was. Makes my heart hurt. He was 12 when I was born. He had lived for the last 15 years with Hodgekins disease. The same form of cancer that took my Daddy 10 years ago. Dad lasted about 18 months after his diagnosis. Billy fought long and hard for 15 years.

I never understood how he did it. His quality of life...he was so strong. Chemo had taken most of his heart, liver and kidneys years ago. He has had caregivers for so long. His daughter has taken care of him for many many years. Thank you Heather for being such a good daughter.

Billy was 39 when he was diagnosed. I never once heard him complain. He always kept his onry sense of humor. He tried to hold on to his indeperndence long after he was really capable of it.

He was a good man. A good husband, a great father, son, brother and Uncle and Grandfather.

Seeing him lying there in that coffin. He looked better than he had in a decade. We all stood around forever after the graveside service several miles outside of a very small town. No one saying it. None of us wanted to walk away and leave him there. It didn't seem right. Putting my uncle in the ground and walking away. It had been a beautiful day up until then. The temperature dropped 20 degrees and the wind howled. We just left him there.

I haven't been to a burial funeral of a friend or close relative since I lost my God son in 97. My Grandmother was unable to bring herself to go. To bury her youngest of 6. Her only son. I'm glad she made that choice.

I have to make more time for the people I love.

I love you Uncle Billy. Tell Harry and Daddy I say hello....

Friday, February 17, 2012

Just you wait

When Abby was 4 years old I went a little ballistic at an IEP meeting. I know. Imagine that. Abby was most of the way through her 2nd year of special needs preschool and I heard things like this:

We have never seen her act like she understands anything.

You have to understand that your daughter is profoundly mentally retarded and I think it's hard for any parent to grasp...especially when she looks so normal. She is really very pretty.

Abby is in her own little world with little interest in anything other than socialization. She is very popular with the other kids. Even the typical ones.

I could go on and on. I flipped. I went home and over the next few days took the following videos. Unrehearsed...1st take videos. They show her following along in a book. Looking at the pictures as they are mentioned in the story by face pointing or slapping the character.


I showed that she understood colors and shapes. She would choose directly from 4 choices by slapping at(she cannot point) or by looking directly at he answer. With Apraxia....the worst part of Rtt Syndrome, you do have to wait anywhere from a few seconds to up to a minute for an answer. This is not something I have made up but scientific fact.

When I took the videos to school the director cocked her head at me and looked sad and said," You are her mother. We are never going to see what you do."


These videos have been used by Neurologists and lecturers from Harvard to Columbia and more..yet I can get no one to admit or agree that she can answer, choose and learn.

In the next few days or so I am going to attempt to gather video of her doing these kind of things again. Why? Because I can't seem to get through. I adore Abby's staff and I know they mean well but, they don't get it.

I have gone in and shown them how she pics yes and no. She can do it by eye gaze on a card and by direct eye contact or looking away. I have shown them how they have to wait if she looks at the wrong answer first...especially if she hasn't looked at the right answer. I have shown them how..if she looks at the right answer first she will not go looking for the wrong answer.

Why am I doing it again? This quote," She has Rett Syndrome. Just because she could do it then doesn't mean she can do it now."

Double ouch.

I have to wait till I can have someone here to film while I work with her but they will come.

You'll see

Just you wait