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 away..my 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....

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.



and



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."

Ouch.

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

Dora, I good girl, yah!

Tell me this kid isnt in there and doesn't need to communicate! Oh no I'm sorry wouldn't be able to communicate

Scoliosis, Rett Syndrome and my Abby

Last year I told you all how Rett Syndrome Sucks. I told of our journey with Scoliosis and Rett Syndrome along with pictures of xrays. On these xrays you could see that Abby's curve had doubled in just a few months time. Despite the facts that we had enrolled her in Hippotherapy and upped her PT time outside of school her curve still doubled.

It took us several months to find a Chiropractor and Massage Practice that would take Abby on. With a huge discount and help from our church we were able to come up with a plan of treatment. Once again Thank You Fountain of Life and Nashua Baptist!

You can view the video of her progress here.

Never the less...it was not enough. Although we do intend to keep her in all her therapies we had to make the decision to brace Abby. It was not an easy one to make and almost everyone said the same thing..."Bracing doesn't work with Rettgirls. They don't tolerate it."

Here are some pics from Abby's brace fitting...that she is tolerating beautifully



When they first put it on. I was so upset but I knew if I cried she would too and she was being so good.
Here we go..she can sit up
Look at her Cheesing at the technician
On the way out. Sitting up as straight as can be....and yes..her legs really are that long!

Christmas 2011

This Christmas we did things a little differently and just loved it...for the most part. We invited a family friend and had a peaceful all about us and the Lord kind of Holiday.

Sunday morning Abby was pretty interested and confused with other people's gifts

And one posed smile from Bubba
Yeah. What she get...what she get?
What? I'm being good
What did ya get Aunt Pam????
Look at my pretty outfit!
Check out all the bows in her hair! I think those and this lighted aquarium were her favorite!

See ya soon!

Rett Spell

Isn't she pretty? Pretty evil I tell ya!

Nah I shouldn't say that.

Anyone living with Rett Syndrome can tell you that we call it..it being Rett Syndrome the invisible monster. We never know how or when it will tighten it's grasp on our children but when it does...all other life shuts down.

As far as Rett Syndrome goes Abby is a pretty happy kid. I once even has a Neurologist tell me she was the least afflicted case he had ever seen. Now she is not the least afflicted case I have ever seen but more often than not Rett Syndrome is worse for other kiddos than my Abby.

Most days, at first glance Abby appears to be normal. As long a she's quiet. Then you will notice the odd, rhythmic movement of her hands. Maybe another sideways glance and you see that this very tall 7 year old is drooling and licking her hands. By this time you are intrigued..you can't help yourself. She is so pretty...what could be (wrong) with her?

She catches your eye and locks you there. It's like a Jedi mind trick. You can't look away. She then looks at you and dead serious says," Ah mag ackah likea boggah noo?"

You find yourself looking away in shock then back at her. You might reposition yourself in the room/store/church. What is it? My God what has a hold of that beautiful little girl?

Rett Syndrome. A horrible cage like monster that has control over everything she does. Rett Syndrome comes in stages.....Stages we don't like to talk about or even think about which one our girl is in. Not after stage 1 anyway. I think we may be entering another stage or phase in our Rett Syndrome journey. Abby is different...difficult..hard to deal with.

She relies on me or others for everything. EVERYTHING. She cannot eat, drink, dress,clean herself or even pick up a simple...a simple...anything. She must be carried to her room and to the bath. She is getting quite heavy...Tiny girl that she is.

I really don't know if she is becoming more aware of how trapped she is. If she is just down right pissed? I don't know if there is something hurting her. Maybe a little of all of the above?

I know she stopped sleeping there for a little bit. Yes stopped. Easy thing to do with Rett Syndrome for some of the kids. Melatonin had been a God send for us for many years and it just stopped working. Her Neuro put her on a different med and hallelujah it's working. She had us cut it in half last night because it is an adult strength medicine and she was up to almost 1am.

With the no sleep came these epsiodes or fits. I can no longer take Abby...almost anywhere. Not by myself and not without someone to help me. Even then it is usually too much for her. Unless I can hold her tight, give her my full attention and an ipod too with music or videos for her to concentrate on s.he freaks out. I mean FREAKS OUT. She screams in terror, claws at me. Bites. Her eyes always pleading for me to help her...get her out of there. Doesn't matter where it is. You get her back in the car or back home and she's fine. Happy as a clam in fact I don't know if this is a stage, or a phase or anxiety...I know it's at least anxiety I just don't know what to do to help her.

So that is where we have been and what we have been doing. Trust me..it's exhausting.

Christmas pics and a great surprise to fill you all in on soon.

Another one bites the dust

And our van is dead. Completely caput. The four of us officially have no vehicle. I feel like I'm going to be physically ill.

George came home to take Kyler to work today. He called me 20 minutes later to say when he was getting off the highway everything just shut down. It wont start,respond or even make a noise.

We are in a contest to win a van for Christmas. This couldn't come at a better time...although I have no idea what we will do until then..although I am sure we are not the neediest in town when we applied we talked about having a vehicle it just wasn't reliable...now it's just nothing. We are up against many many people.

Please pray we are able to win this van. If not we are looking to make payments on a used vehicle...with a quickness