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A Sobering Experience

I’m back. My weekend started off exactly as I had predicted. On Friday, I took the train to Plymouth where my parents met me. We drove over the Cape Cod Canal and directly to Seafood Sam’s for dinner, then back to my parents home to play cards. Then we went to bed. I did try to get in contact with a childhood friend who still lives on the Cape, but as my friend had warned me, the phone line was busy the entire night as her Mom is now addicted to chatting on line and they have a dial-up modem.

On Saturday, we drove out to my brother’s house in Easthampton. We were there to celebrate the birthday of my niece, Heather. I can’t recall if I’ve written about her in the past, but I will now. This was Heather’s second birthday. She was born about two months prematurely and had complications from day one. She’s spent nearly her entire 2 year life in and out of hospitals; undergoing tests, suffering from pneumonia, and fighting off infections. Her digestive system doesn’t work so her only source of nourishment has been through a tube that was installed directly into her stomach shortly after birth (she’s tried eating solids and will have good luck for a few days before her body rejects it and she gets rushed to the hospital). Occasionally this tube gets infected and has to be removed, relocated and/or cleaned. After countless misdiagnoses, the doctors have determined that she suffers from mitochondrial disease. Apparently there are various types and severeties of this disease – and she’s got one of the worst ones. Aside from it’s effects on her digestive system, she bruises easily, has little sensation to pain (could put her hand on a hot oven and not notice the pain), is prone to infections, suffers through extreme internal physical discomfort and catches pneumonia regularly.

Yet through it all this kid is a trooper. She was recently outfitted with a wheelchair (though, at two years old it’s more of a suped-up baby carriage). On her good days, she smiles, laughs and plays like any child. On her bad days, she usually keeps quiet and simply look sad. We had thought her birthday was turning into a good day…

…but she was hospitalized again the following day (and she still is there as I type).

Anyway, the party was actually a good time. Being two years old, Heather isn’t in school yet and hasn’t made many friends. However, my brother and his wife have found support in other families with children suffering from the same disease so there were quite a few children present enjoying the barbecue, pinata (imagine asquiggly line over the ‘n’), cake and ice cream. Nearly all of the children appeared healthy and happy. But as the day went on and I spent more time with these kids, I realized the complications they all have. There was one 11 year old girl that kept carrying a book bag on her shoulder – even while playing and running around. Hours later I found that it’s not a book bag but a medical bag that contains the equipment she needs to stay alive (she, too, had tubes under her shirt for feeding). She’s awaiting a new liver. Then there was a two-and-a-half year old girl that has never had a single bite of real food – and never will. She had to watch her sister and the other kids eat burgers, cake and ice cream while her mom connected an IV bag to her stomache tube. There was also a very thin 6 year old girl who wanted to participate in everything – but was too weak to join. She kept to herself playing with some toys. She participated in the pinata (once again, imagine the squiggly line of the ‘n’) but could only pick up the non-candy items that fell out since she can’t eat solids, either. To make matters worse, although she can’t eat solid foods, she also can’t go below 38 pounds because she could die.

All in all, despite their physical limitations, these kids were having a great time. And so did I:

But it was quite a sobering party for me. I mean, these kids are fighting for their lives and trying to live each day to the fullest. And none of them know any different – this is the only life they know. And here I have been bitching and moaning about the complexities in my life which, in the scheme of things, are so minor I feel so selfish. Ironically, I returned yesterday to have dinner with Matt and our friend, Alan, who was visiting from San Francisco. During the dinner, Matt and Alan (who had arrived Friday – the day I left for the Cape) told me that they had discussed over the weekend how much life sucks. Yet all I kept thinking was “you have no idea how much worse it could be.”


  1. Comment by David on September 27, 2004 2:41 pm

    View from a Hammock……
    Nice legs Karl.
    Too bad your hurricaine died……….

  2. Comment by jeff on September 27, 2004 2:57 pm

    I want a hammock!

    You’re right – no matter how bad something is for one of us, there are always people in the world who are worse and who are making it through too.

  3. Comment by Thom on September 27, 2004 10:14 pm

    An experience like that certainly does make you appreciate your own life. And, on a more superficial note, that is a hot pair of legs!

  4. Comment by Robert on September 28, 2004 4:00 am

    Happy belated birthday Heather!!!! She’s an angel… 🙂

  5. Comment by matt on October 3, 2004 4:52 pm

    yeah, it could always be worse. Heather is such a little angel — I find it so hard to understand why such horrible things happen. Age old question.

    I still stand by the point of view expressed by Alan and myself — life sucks. However, maybe it is those hammock moments that make it all worthwhile. Your legs look awesome, baby!

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