Sunday, November 8, 2009

A Tale of 2 Berlins


I couldn't sleep tonight, so I started watching a documentary about the Berlin Wall. Watching it brought back an interesting memory. It's funny now to look back at but I can assure you, at the time, it was anything but funny.

I grew up an Army brat. I was actually born in Stuttgart, Germany. We came back to the states when I was less than a year old. That was 1963. Thirteen years later, my dad was once again stationed in Germany. This time, we were in Heidelberg. My dad was part of the 207th Aviation Company. He was an Army pilot.

I loved being in Germany as a teenager. We traveled all over Europe. We went to England, France, Belgium, Italy, Switzerland, Austria, and even the tiny country of Liechtenstein. Since I've already dated myself, I can share that when I was living in Heidelberg, Germany was divided in 2. We decided to take a family trip to Berlin. Now if you know your history, you know that Berlin was divided in 2 and the entire city was located in the middle of East Germany.

To get there, we had to get special passports and rode what was called the troop train. Once we passed from the West into the East, we had to stop at every station for the East German or Russian soldiers to board the train and check our passports. They also had mirrors on long poles that they would slide under the train to see if anyone was holding on to the bottom of the train, trying to escape to the West. My brother and I had our own little room on the train because this was an overnight ride. It was great fun.

So, we get to Berlin. It was my dad, mom, a close family friend we always called Uncle Dave, my brother, and me. Uncle Dave wanted to go into East Berlin. Because of my dad's job, he wasn't allowed to go, so he and my brother spent the day at the Berlin Zoo. That left Uncle Dave, my mom, and me to go into East Berlin.

Something to know about is the money exchange. In West Berlin, you could get 4 East German marks for 1 West German mark while it was 1 for 1 in East Germany. Keep in mind; you weren't supposed to bring any money across the border. You were supposed to exchange it once you crossed into the East. However, I guess we wanted to be greedy and have more money to spend. Now you have to remember that I was only 14 years old and this was 1977 when 14 was still a child.

We exchange the money and I put it in the bottom of my sock and slip my shoes on. We head through Check Point Charlie. Once we get to the East German side, we walk into a building and my face turns completely white. In this building are several dressing rooms. I've now become terrified that I am going to be strip searched, they are going to find the money in my shoe, and I'm going to be carted off to a Russian prison. My mother grabs my hand because I'm starting to hyperventilate. The reality is that these used to be dressing rooms from back in the late 40's early 50's. I let out a huge sigh.

There are some interesting stories that I would love to share from inside East Germany, but this post is getting long, so I'll have to do a part II to this story. Needless to say we didn't want to smuggle the money back through and the only thing we could do with it is eat because anything we bought would have to match up with the exchange receipts we supposedly had from the East German bank. Yeah, that isn't as easy to do as it seems. We ended up tipping the bathroom attendant lady insane amounts.

When it was time for us to come back to West Berlin, we went through the building, handing each East German soldier at various windows our passports. Uncle Dave handed a soldier his passport, the soldier looked at it then sent him out of the building back towards Check Point Charlie. My mother went next but she stopped at the door, waiting for me. The soldier took my passport, but he wouldn't give it back. He put it to the side and started fiddling with his stool. My mother is still standing there and the soldier notices her and tells her she has to leave. She tries to explain to him that I am her daughter and she is waiting on me. He just says, "No you must go".

I get scared and start to tear up, thinking the soldier has just misunderstood. The soldier, my mom, and I were the only ones in the building. He walks out from behind the counter and "gently" pushes my mother out the door. That leaves me in there alone with him. He goes back around and starts working on his stool. I have no clue what was wrong with it, but he had it upside down, checking the legs and other stuff. By this time, I have definite tears rolling down my cheeks. I'm petrified, wondering what in the hell could possibly be going on. After about 20 minutes, which seemed like hours, a Russian soldier walks in, says something to the East German soldier. It didn't sound very nice. So they hand me my passport, the Russian soldier smiles at me, grabs my hand, and walks me out the door and up to the American soldiers at the check point. My mother is almost in hysterics by this time. She keeps asking me what happened. All I can tell her is "nothing".

At the time, I thought I was going to be traumatized for the rest of my life by that experience. In reality, it's become a really neat story to tell but you could never have convinced me of that back then. According to my dad, he found out that the East German soldiers just liked to harass American tourists and it was just my turn.

I hope you enjoyed my little story and I'm sorry that it turned out to be so long. I'll have to share the rest of it sometime.


Thursday, November 5, 2009

Writing Her Own Pages


Today was Taylor's appointment with the neurologist. That's nothing new. We've gone through 15 neurologists in 20 years. Only 2 of them were because we didn't like them. One of the ones that we kicked to the curb had the gall to tell me that at 5'7'' and 105 lbs, Taylor needed to lose weight. I think I stood there for a few minutes dumbfounded. What the hell? I'll have to share that story sometime.

We decided to start Taylor on the new seizure drug Banzel (rufinamide). This will be on top of the other 3 drugs she takes: Keppra, Zonisamide, & Clonopin. This drug was specifically made for the condition Taylor has, Lennox-Gastaut. She has started having drop seizures again and I'm hoping to stop those. The absence & complex partial seizures are bad enough without adding those. Before her brain surgery, the drop seizures caused a broken leg, several broken noses, a huge blood clot in her butt from falling backwards that had to be surgically(350cc's of blood removed + a drain for 7 days) removed, and other countless bruises and scrapes.

I was talking to the neuro today about Taylor losing some of her milestones. She is a sweet women and an awesome doctor. She genuinely loves Taylor. Anyway, she was telling me that for some MRDD patients, she thinks that it was just their time to lose some abilities…especially when she can't pinpoint another reason. However, with Taylor, she knows for sure that it's the seizures that are causing her to regress.

She said to me, "Taylor is living on precious time & she is writing her own pages". That sentence touched my heart. The combination of Taylor's medical issues is unique. The Trisomy 9p is rare not to mention that she was born with unrelated birth defects involving her brain, kidneys, & stomach. So yes, Taylor is writing her own pages in a medical journal, but I think there can be so much more to that statement.

Taylor is writing her own pages in this world. She is leaving her mark in her family's hearts & I haven't met many people who aren't touched by Taylor's sweetness. I do know that Taylor is living on precious (borrowed) time. Having the neurologist say it does make my heart skip a beat but I'm not going to start paddling down that river of denial now. I know that nothing will ever prepare me for the loss of my Taytiebug. I'm just going to enjoy each & every day of her precious time here on earth & keep hoping that she has much more precious time with us.



Monday, November 2, 2009

Sanitizing Police, Taylor, a Cow, & a Seizure

Today was Taylor's port flush. She has it down at the infusion center in our local hospital. With the H1N1 flu going around, they have instituted some severe restrictions when entering the hospital.

No one under the age of 12 is allowed in the hospital at all unless they are the one being treated or tested. No one under the age of 18 is allowed in the Maternity area. When you enter the doors of the hospital, you are greeted by the "Sanitizing Police". (Please note my restraint in not calling them "Sanitizing Nazis".) You are required to hold your hands out for them to squirt sanitizing foam into.

Because Taylor was the "patient", I had to wear a name tag with the date of the visit written on it. Now, I'm not knocking these precautions in any way. I understand in keeping people as unaffected by this flu virus as possible. It was just a sudden shift as I was just at the hospital a few days ago.

The Bossman was nice enough to download my Halloween videos off of the camera and so I'm going to share one of Taylor, the cow, and a seizure. I missed the beginning of the seizure, but I think I caught enough of the one we call "the elvis" to give you an idea. She can have as many as a few hundred+ of these a day. It's funny how as soon as the seizure is done, she "says" something. We may not know what she is saying, but it's definitely something. The Bossman wonders if it is actually part of the seizure itself or if it's a coping mechanism for her.



Friday, October 30, 2009

Refusing to be Politically Correct About Disablities



I've been meaning to write this post for awhile now. I just haven't been sure how to approach it. It's going to be very anti-pc. Of course anyone who reads my blog knows about Taylor and that she is profoundly developmentally disabled. That's a pretty long title but it is the politically correct way to describe Taylor. However, we who love her call her something else. No it is not the dreaded "R" word but I will admit that it is a variation of that one. It's one we find endearing to us.


Now, I realize there are going to be a lot of people that might be upset or horrified that I would use this word in talking about my child, but she is my child and I would never call anyone else's child by this name. I'm sure it helps matters for me that Taylor has no clue about the meaning of this word or even the above phrase…profoundly developmentally disabled. I'm just going to go with PDD from now on. Anyway, Taylor knows tone of voice. You could say the vilest curse words to her and if they were said in a sweet loving voice, she'd smile and laugh.


I'm sure you are wondering by now, what word could her family possibly be using that might offend you. Well, just the other day, we told Taylor that she will be the most popular tardy in her class today. I'm sure some of you sent up a collective *gasp* after you read that. Yes, I do use that word with my child. Partly because of the origin, which is too long to share with you on this post, but also to thumb my nose at everyone expecting me to keep up with whatever the most pc word of the year is when it comes to kids/people like Taylor.


Also related to the above issue is that, as The Bossman says, I do know how to play the "gimp card". Now before you really get angry at me, let me explain. The Bossman and I have been together for over 3 years now. 25 years ago, The Bossman was a cop in California. Unfortunately, an off-duty diving accident made him a paraplegic. I've never known him without the chair. Our first travel trip together really opened my eyes to how inaccessible things really are. We booked a "wheelchair accessible" hotel room. Guess what? We got to the room and The Bossman couldn't get his chair through the door. I was told by the front desk that "most chairs" can. I think I stood there with my mouth hanging open. Most chair? Seriously? His chair is less than the ADA required 36''. They were nice enough (insert sarcasm here because they kept telling us how nice they were) to open the room beside it because it had a wider door and let us use both rooms.


Since that trip, I refuse to have to do some sort of awkward shit just to spend the night away with The Bossman. When we went to a casino here on the Oregon Coast…they actually expected me to wheel him down a ramp, in the dark, without railings to keep you from dropping off a short cliff onto the beach, leave him there, walk around, go upstairs, open the main door, go in the room, unlock the back sliding glass door, and let him get in that way. No, I'm not kidding.


When the hotel receptionist told me that, I just looked at her and pulled out the gimp card (The Bossman's term) and played it like a pro. Needless to say, they gave us a suite in the tower with an elevator and a ramp to get in the building.


For those that think that "hey, you got upgraded without having to pay the extra $$", you're damn right. The problem is that I shouldn't have to "play that card". No one should. If you work in a hotel and you get a call from someone who says they are in a wheelchair and CANNOT walk, think about that when assigning rooms. Some think wheelchair means just having trouble walking…not completely unable to walk. We've had some think he could just stand for a second. Yeah…that doesn't really work well with a severed spinal cord.


Look, I don't expect everyone or anyone to understand my use of the word tardy when I talk about Taylor with family members or even when I'm talking to her. But it's my choice, my word, and it's said with more love than you could ever imagine. No, I don't say that word in front of others. Not because I think it's wrong, but because I don't want to make anyone feel uncomfortable or awkward.


This is just my world and I thought I would give you a glimpse of my total un-politically correctness. Feel free to disagree with me in the comments section. I welcome all respectful dialogue.


Now I need to do my "Yes I Did" Friday post.



Monday, October 26, 2009

Continuing Tales of a Bad Knee



I just wanted to jot a quick note to my friends to let you know that I haven't taken time off from the computer…at least voluntarily.


Since my partial knee replacement a few years ago, there have still been some ongoing issues. My surgeon and I are trying what we can to avoid a knee replacement revision as that is a big surgery.


Anyway, over the weekend, somehow I managed to break the blood vessels in that leg and it turned blue and swelled up. It's also very painful right now. Oh the wonders of strong pain meds! So per the doctors and most importantly The Bossman's orders, I'm relegated to sitting on the couch with my leg propped up and iced for at least the next few days.


I just didn't want anyone to think I'm such a mental mess that I needed more mental health days away from the computer. *laughs*


Saturday, October 24, 2009

My First Video

Okay, so The Bossman got a new video camera. Today was the first time that I used it. I decided to take some video of Taylor after she got home from school. This is the only one I'm happy with unedited, since I'm still learning that.

Anyway, I hope you enjoy getting a glimpse of Taylor.



Friday, October 23, 2009

Yes I Did Friday!

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

Yes, I took a 10 day break from the internet, only using it for work and important emails. You could call it a "mental health" holiday.

Yes, I acted like a baby when The Bossman and I had a misunderstanding 2 nights in a row. Yes they were my fault and Yes I'm going to deny they were.

Yes I let my grandkids decide what they want to eat for dinner when I watch them even if it is cheese and crackers. It's a Nana's prerogative.

Yes I wrote "Dawn was here!" as graffiti on the inside of The Bossman's model train layout tunnel just for fun. (Third picture down)