26 January 2007

The Anniversary - Part 1

It is only the 3rd time it has happened since I was 12 yrs old. All three times have been in the last 9 years (since I was married, and this has a lot to do with it). I am hoping to have a first anniversary of something better next year this time. This anniversary makes me think of a few things very deeply. So I am going to have a multi-post story running for a little bit. Hopefully it won't be too disturbing.

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So this is an anniversary of sorts. I am now clean 1 year. It has only happened a few times in my life but when it does I love it. I have stayed healthy enough for the last year to keep out of the hospital. Now that may not seem like much, and some people would say they go their whole lives without going in the hospital. But for me, like turning 30, it is a huge deal. Much of the reason is my wife JG who is constantly encouraging me to become better and better. And always supportive, even when she doesn't want to be, of my treatment times. Which always encroach on our time together.
In my family there were 4 of us that were born with CF. My oldest sister, myself, my younger sister, and my cousin (who was 2 months older than I.)
My oldest sister died just minutes after she was born, it was in the early 60's and they didn't really know what had happened, just that she never took a breath. They were never able to clear the airway despite continuous bulb suctioning, and even regular hospital suction.
The autopsy said that her body was full of thick sticky mucus. The intestines, the stomach, the lungs and the nose. She never had a chance.
I was born 10 years later. And my birth was so similar to my older sister's that my mother was very worried, and felt like she was re-living that time in the 60's. By the grace of God and the expert care of medical professionals, I was able to make it.
Of course there was the med student that ran the test for CF for the 10th time when it came back positive. I have always had a special appreciation for Med students since then.
When I was diagnosed they suddenly realized what my older sister had died from. And they tested all the family and extended family for CF. My cousin came back positive, though as of yet she hadn't showed any symptoms except for being unusually small. Being just 3 months different in age, and sharing a bond of CF we were obviously friends and very close.
2 years later my younger sister was born and immediately they knew she had CF, because of the meconium ileus she had at birth. So there we were, 3 kids with CF.
So right before my sister turned 4 (I was 6), the family was on a trip. My parents suddenly had to rush home with my younger sister. She had gotten a cold and was getting worse. The other 5 of us kids were driven home by a family members to grandmas.
I never saw my sister alive again. She died in the morning on her 4th birthday.
This came as quite a shock and even though I was very young I still remember it vividly. My parents had the viewing in our living room. To me it was very disturbing. My roommate was gone. I still remember just laying on my bed wondering why. Not why she had died, I knew that she had died of CF... a different more disturbing why.
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Come back soon for part 2 of The Anniversary.

2 comments:

Anonymous said...

umm dork, didn't know you had a blog.

katie said...

I have loved reading your blog. I love getting the insight of someone I have great love and enjoy so much. Thank you for sharing these awesome posts and I can't wait to learn more and understand more about the great Jack Phillips