Saying Goodbye.

A little over 2 weeks ago we laid my little brother to rest.  After 36 years of living with 15% (give or take) of a normal lung capacity he finally has the relief and release of not having to struggle anymore.No more fighting to breathe.  No more yards of oxygen tubing trailing him.  No more having to breathe through a trach.  Finally free.

The enormity of the impact he had on my life can’t be adequately measured.  Nor the scale of impact on the hundreds, possibly thousands of lives he touched in one shape or another.  Unique is beyond description.  Missed is the true reality.

He and his brother were born too early in early 1980.  Back before artificial pulmonary surfactant, back before many of the advances that modern medicine has discovered in the care for those born too early, back before they really knew or hoped for better outcomes for preemies.  The wise doctors gave them a 50/50 chance to make 6 weeks.  He made it 36 years and every time the wise doctors said he wouldn’t make it since, he turned around, grinned and proved them wrong.  It wasn’t the age though that got him in the end, it was the mileage.  Imagine going through life always needing something, oxygen, a ventilator, to help you breathe; it must have been terrifying and frustrating.  Being able to interact with the world, but not truly able to fully engage with it.  That was my brother.  God knows he tried though.  Tried to live his life as best he could, as he knew it, by his terms if he could.

Some have asked me how strange it must have been for me to have him as a brother.  But it wasn’t: his limitations were the normal, we were used to living within them.  Looking back it is strange to think of 10 year old me changing his trach when he accidentally pulled it out, but at that moment it wasn’t.  Any wonder I ended up becoming a nurse!

Strange is now realizing that when we go back to Seattle to visit my family we won’t be making that side trip to visit him.  To come around the corner at his house to see him sitting on his exercise ball at his computer and then looking up at us like we were weird for being there.  But grinning at us when he realized that we were there for him.  That grin was infectious.  It was rare in the last couple of years as the mileage added up, but it would come out and light up a room.

He had been on hospice the last year of his life and by proxy I became my parents’ medical adviser when it came to what was going on.  I shared in the agonizing decisions in the last year, made almost worse by my distance.  Luckily they had very clear ideas on what they believed was the best course for him – and I would like to believe that he shared that idea too, even if he couldn’t express it beyond asking for the pain to go away.  Finally he was granted that wish, early on a beautiful Sunday morning he passed away peacefully in his sleep, in his home.  There was grief, leavened by a touch of relief that he was in a better place now.

It’s said that you can tell a lot about a person by the amount of people that show up for the memorial.  In his case it was true.  The amount of people who came to support our family was staggering.  It was cross-section of the people in our lives from day one.  There were nurses who had cared for him 36 years ago to the current day and plenty of family who came to mourn the young man they knew so well plus people from random-ish encounters, people whose lives he had touched, either directly or indirectly in some fashion.  Thinking about it now still impresses me.

Above I said that it was any wonder I became a nurse.  That rings beyond true.  Considering I could change a vent circuit early on it’s a surprise I didn’t become a respiratory therapist instead, but a nurse I became.  They say every nurse has a fluid they can’t deal with, for some it’s melena, some peritoneal fluids, for me it’s renal failure urine, but for many it’s lung butter – something thanks to my childhood has never been a problem for me.  And that’s the least of the things he taught me allowing me to impact lives far beyond him.  If things had been different, if he and his twin had been the little girl my parents were hoping for, obviously things would have been different, but there’s a deeper level to that beyond pure genetics and twists of fate.  He taught me so many things like compassion for the different, empathy for the sick, without even trying, just by living and being my brother.  For that I’m beyond grateful.

He’s gone now.  But he left a legacy a mile wide.  Thanks to President Reagan (perhaps the only time I’ll say something like that) who signed into law a change to Social Security that allowed him and others like him to leave the confines of institutions and go home, something that happens as part of regular happenstance now.  He was the 6th individual to do this in the entire nation and the 1st to do so in Washington state.  The fact that a medically fragile child, dependent on a ventilator and oxygen, requiring skilled nursing care could come home was proved by cases like his.  He came home and the wise doctors expected him to die but instead he thrived.  Once again proving them wrong.  That was what he did, confound, teach, touch and make you better for having known him.

And that’s why I love him.  And why I miss him.  And will never forget him.

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2 Comments

  1. Very sorry for your loss. Your words show how much you loved him and how much he was loved. Thank you for sharing your story.
    I found it equally satisfying that you used the term ‘lung butter’ instead of mucous. (internet fist bump)

    Welcome back Wanderer… I missed Ya!

    Reply

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