No Rest for the Weary
One thing I’ve learned over the years is that I have little tolerance for stress. I left my previous job 5 years ago because I was so miserable with the stress involved with it. It was eating me up inside so badly that I had constant stomach cramps and anxiety. I quit that job without even having another job lined up (I was desparate to get out of there) and quickly landed my current job – the best job decision I’ve ever made.
Then about a year and a half ago a new type of stress arrived: homelife. I was dealing with a deteriorating long-term relationship (nearly 10 years), the sale and purchase of new property, and the sickness of 4 family members (niece with mitochondrial disease, nephew with Tourette’s Syndroms and Aspergers, father with some bizarre temporary paralysis thing and mother wth a possible lung cancer scare). Anyway, instead of learning to deal with the stress, things kind of settled over time and my stress level diminished.
Things haven’t been so lucky for my brother. His daughter (my niece, mentioned above) is getting worse. I’ve written about her before, but in summary, the symptoms of her mitochondrial disease have left her legally blind, in a baby-sized wheel chair, and without any functioning digestive system. This poor little girl (almost 3 years old) has never eaten food. Ever. In fact, she can’t even drink water or suck on an ice cube. Since she was an infant, surgical tubes have been permanently installed into her stomach and chest to provide her with IV nutrition. Other tubes are used to administer medications, and others used to remove waste (bile, etc…). She also requires an oxygen tube for breathing, 4x/day catheterization and IV medicine injections every 4 hours (even into the night, administered by my brother).
The past three years have consisted of near constant trips to Boston hospitals, requiring my brother to stay at home with their other young children (and hour and a half away) while his wife stays at the hospital in Boston with the the other child. This has also prevented them from working because my niece’s hospital stays range from a week to 3 months at a time. Despite my niece’s disease, though, she’s growing (size-wise) at a healthy rate and, when not sick, is full of energy.
Complicating matters, my sister-in-law started exhibiting signs of diabates a month or two ago. Then, last week, she collapsed. She was rushed to a Boston hospital to discover that, at 33 years old, she suffered a stroke. Further analysis showed that it was caused by the same disease my niece has: mitochondrial disease. Apparently, this is a hereditary thing that is carried down from the mother. So, it is expected that my “healthy” niece and nephew will also likely someday suffer through similar complications.
My sister-in-law was ultimately released from the hospital, but 3 days later my niece was sent back to the hospital. Now my brother is taking care of a disabled wife, a severely disabled little girl, plus two other little children – with the fear and knowledge that his other children are someday going to suffer, too.
I went to the hospital to visit yesterday and he looked exhausted. I’ve never seen him look so worn down. That man needs a break. So, I offered to take their two healthier kids and bring them to the Cape with me for the weekend (staying with my parents). Unfortunately, logistics didn’t work out and that wasn’t possible – so now my brother will be with us down there while his wife and youngest daughter stay at the hospital. However, I plan on taking him out of the house – away from home, children, wife, and stress – to do something. Anything. Just a break from life.
Now I feel selfish because I piss and moan about how much stress I had been under at various times of my life. But what I’ve been through can’t even compare to the living hell he’s endured the past 3 years. I mean, he’s not even had a day’s break. No vacations, no weekend getaways, not even a day off.
Hopefully this weekend will provide at least a few hours of peace.
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Karl.
You don’t piss and moan too much about anything anymore then anyone else.
You have been through a freaking emotional roller coaster of the last couple of years.
Its amazing that your brother has kept it together for his family. I remember meeting him when we all went out to dinner. He was such trooper for watching that awful gay flick 24 Hours.
I’ll keep him and his family in my prayers.
It’ll be good to spend some brother time with him. You’ve been so good at being there for people since I’ve known you, so don’t put yourself down. Ya’ hear me dude?
Blessings to your brother and his family. That’s more than anyone should have to endure.
yeah, we don’t know from stress. did you get my email?
this is an incredible situation and your whole family are in my thoughts. you should know, i don’t think you piss and moan much at all. i think, if anything, this shows what a big sensitive heart you have.
Your brother is lucky to have you looking out for his welfare and thinking of him when he is so overwhelmed with his family problems. It must be incredibly difficult for your whole family. Stay strong!