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Saturday, April 15, 2006
Baby W in his Easter Suit!
Hope everyone enjoys him -- he is a cutie!
-Mr. W
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Wednesday, April 05, 2006
WalkAmerica -- Have you donated???
Okay, I'm not usually one to do this kind of thing. I'm not very comfortable with the whole asking people for money thing. But I'm going to make an exception for this.
On May 7, Mr. W, the lowercase and I will be walking for the March of Dimes. (Technically, one of us won't be walking. Damn lazy is what he is!)
Now, I'm not asking that you donate directly to our family team. Mr. W is pretty adamant that our actual last name and exact location not be posted here. If you want to donate to our walk, please let me know. Even if you don't donate to us, please, sponsor someone. Go to the WalkAmerica site. Register and walk yourself. And don't think you can't participate if you aren't in the US -- they do accept international donations!
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Adjusted age: 12 weeks
And still he is quiet. We get the occasional coo, every now and then a laugh. But mostly we have lots of silence. He's very alert and checks out everything going on around him, but he is making no attempts to really involve himself vocally in the world. Since it is just me at home with him most of the time, I make an effort to talk to myself, verbalizing absolutely everything that I'm doing. (Seriously, how many times can you say "Oh, no, daddy's sock is inside out, let's pull it the right way, now I'll grab the other sock and roll roll roll!" without going insane???) In addition, I try to leave the television on so that there are other voices...anything to get him to hear more language. I'm just hoping that he decides to make some noises soon.
I can honestly say that I'm getting very worried about his development. In one short month we perform the ages/stages to determine where he is developmentally and if he will need extra help from early intervention professionals. I go through the questions myself every few days just to see if we have made any progress. At this point, he still is in the "needs professional intervention" in all but one category. I'm just so very worried about this.
Now, I do know that every child develops at their own pace and that his pace may not be the norm. I also know that statistically speaking, children who do not meet the norm are likely to have some sort of problem. And even if he doesn't have a problem, per se, I still don't like the thought that after having been poked and prodded by so many doctors and nurses that we could have to add occupational therapists to the long list of people messing with my son.
I think that's become my refrain from the time that I realized staying pregnant was going to be an issue, through my testing and diagnoses, to the preterm birth of my son by c-section: I WANT SOMETHING TO BE NORMAL, DAMN IT!
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Saturday, April 01, 2006
I was born three months after my mom's younger sister gave birth to a baby boy in 1977. We all lived in the same small town and my cousin and I were inseperable.
On Labor Day weekend of 1978, I walked for the first time without an adult holding my hand. My cousin and I were standing beside our mothers at our town's parade. The adults were talking and didn't notice him taking me by the hand and leading me down the block. (My aunt noticed first, quietly slipped away from the group and followed us closely to see where we would go, which ended up being down a block and across the street where we began picking up candy from the passing parade)
In August of 1982, we began Kindergarten together. We were in the same class and I remember being so upset that we weren't at the same table. We went on our first flight that Spring Break to visit our grandparents. On that flight we lied to a nun, telling her that we were twins. She, of course, believed us. We were both small with shiny brown hair, though his eyes were brown while mine were a shade of gray somewhere between blue and green.
Beginning in 1987, we flew by ourselves every year to stay with our grandparents for the entire summer. We shared a room. We played together every day. He gave me my first black eye while pretending he was a criminal being carted off to jail by the sheriff.
We were best friends, but we had some major differences. I was the goody-two-shoes type. I rarely did anything I wasn't supposed to do and when I did I almost always confessed to my mother within an hour. My cousin, however, was not nearly so good. He had occasionally snuck cigarettes from his parents before that. He had taken drinks from his dad's beers when nobody was looking. He would go places and say that we had his mom's permission to be there when we didn't. He was always fun, but he wasn't always honest. He was a hedonist in every sense of the word, living for the moment and never thinking about the future.
Things began to completely change in seventh grade. I'm not sure how or when, but he began experimenting with drugs. I don't know positively, but I think he only smoked marijuana at that point. We drifted apart as I became involved in the school show choir (you know, singing! dancing! jazz hands!) and theater productions. And I put a lot of stress on myself to have straight A's. I became a part of that really geeky subset of every school and he connected with the "stoners."
But in private, on the way to and from school, any time we weren't with our "friends" we were still together. We were best friends regardless of our differences. We talked about everything, told each other our secrets. Everything but our one major disagreement was fair game. We simply did not talk about his use of drugs and alcohol. He knew I didn't approve and it always led to an argument. So we both pretended it wasn't there.
Once in the high school Chem lab, another student told me that he had been really high on the morning bus, the one day my cousin said he was running too late to have me pick him up. He then asked me why nobody in my family did anything about him, didn't we care? I ran out of the room in tears and my lab partner was left to explain to the teacher why I left. The boy apologized to me later that day in another class. But to this day I have never forgiven him for that (obviously, there was more to it...basically the boy berated me for 15 minutes for letting something that I had no control over continue).
During our senior year, the drugs took over his life. He quit school because he just couldn't get up in the morning to go after partying all night. On what should have been OUR graduation, he sat in the audience and watched me walk across the stage to get my diploma. That night when I got home from the ONLY party I went to in high school (there was drinking, I didn't have a good time, I came home pretty early) I found a note he had left on a dry-erase board at my house saying how proud he was of me and how much he wished he could have been up there with me. I never erased that board.
At some point, he had begun to have seizures. It was either our junior or senior year of high school. Those continued but weren't very frequent. The neurologists didn't know why he had them but he was put on medication to prevent them.
My freshman year of college, he began thinking about God and the Bible. I was at a Christian college, so he had plenty of opportunity to talk to people about it as I continued to invite him to gatherings of my friends. He said he wanted to get his life in order, he just didn't know how.
Christmas that year was tough. My cousin had a terrible headache that didn't go away. Looking back on it now, it was obvious that things were never going to be the same. If I look at pictures taken of us that day, I can see it in his eyes. I just didn't want to see it that day.
New Year's Eve 1995, he was rushed to the emergency room because he was having a really bad seizure. The doctors there gave him a shot of ativan to stop the seizure activity and he was sent home.
January 1, 1996 he had another seizure, was taken to the emergency room, given a shot of ativan and sent home.
A few days later, he had another seizure that they could not stop with any of the drugs they had. Instead, he was given a cocktail of drugs to induce a coma so that his body could rest though his brain waves continued to show seizure activity. I spent much of my time sitting beside his bed in ICU talking to him, holding his hand, singing, praying...anything that I thought might help relax him...all the while begging him not to die because I didn't think I could make it without him.
He was transferred from our local hospital to the university hospital in the state capitol. I went to visit him on weekends and evenings I didn't have an early class the next day. He was taken in and out of his coma until they found a medication that worked to stop the seizure activity. By then it had been a couple of months and he was taken to a rehabilitation center to learn how to walk, how to speak clearly, how to take care of himself.
In March of 1996, he came home. But he wasn't well. At some point, he fell into a coma at home, but my aunt refused to see it. She said he was just tired. To give him his medication, she would dissolve it in liquid and then rub his throat to help him swallow it. We found out the day that it happened and my parents and grandparents got my aunt to take him back to the emergency room.
My mom showed up outside of my dorm building while I was coming in from class. She told me that my cousin was being airlifted back to the university hospital and that I needed to get some things together to go. I had one mid-term exam later that day, so I arranged to take it early. I threw some things in a bag and was in the car heading to the hospital at the time the exam should have begun. It was the last day of classes before Spring Break.
We stayed at the hospital over the entire weekend. His brain was swelling so they drilled holes to help ease the pressure. His liver began to fail. His blood was circulated through an external device that functioned as his liver should have while we waited for a transplant. The source of the seizures was finally discovered -- there was a lesion on his brain. Once a donor liver could be found, he would be airlifted to Chicago to undergo the transplant and have surgery to remove the lesion.
As we waited, the swelling on his brain got worse. And worse. Finally, there came a point when we were told that the pressure was too great. He was no longer eligible for a liver transplant because his brain could no longer function. He was, essentially, brain dead.
As a family we made the decision to unplug all of the machines. We all crowded together in that tiny ICU room. I stood at his foot with my hand gripping his toes. The machines were turned off. And his heart continued beating. With tears streaming down my face, I whispered that I would be OK without him, that he could go. And at that minute, he died. Monday, April 1, 1996.
It's been ten long years since I lost my best friend. I think of all the changes in my life since then and I can't imagine that he wasn't a part of it. If only...If only.
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