AN EXTRAORDINARY LIFE…MY LITTLE BROTHER

My little brother truly was an extraordinary guy.  He was born on June 12, 1957 and was named Cecil Michael Bettger…Cecil after our dad.  We just called him Mike.  He was born with a very rare disease called Hallermann-Streiff Syndrome, and he wasn’t expected to live more than a few days or weeks at the most.

Hallermann-Streiff Syndrome is a horrible affliction that is a congenital disorder.  It affects cranial development, causes cataracts, blindness, and a small stature.

The soft spot on the front of the skull that babies are born with never fully closed on Mike’s head as he grew older. He was born with cataracts and at only nine days old was one of the youngest babies (in 1957) to have surgery on his eyes.  He had limited eyesight and wore thick glasses in order to see anything at all .  His teeth never fully grew in, so he had to wear dentures, which he hated, by the way.  At barely 5’2”, he weighed only around 100 pounds.  Although, his bone structure was small, his internal organs were full size.  This created additional health concerns. He was sick more than most of us with common ailments like colds and flu.

Now, even though Mike was the most amazing person I’ve ever had the privilege of knowing, our mom is definitely the strongest woman I’ve ever known.  Even when the doctors told her Mike didn’t have a chance of surviving for long, she knew differently.  She would not give up on her baby boy and she was determined to do everything in her power to give him the best life possible for however long he was with us.

Mom’s attitude was Mike’s saving grace.  After my parents had the cataract surgery performed on Mike, doctors told them he still wouldn’t live to be more than a few months old, and they might consider putting him in a special facility where he could be cared for around the clock.  Mom disagreed.

She brought my baby brother home and cared for him like any mother would care for her newborn.  Mike needed more attention than most infants.  He needed drops in his eyes several times a day; he had a difficult time swallowing sometimes; and he was very fragile because of his tiny bone structure and of the delicate soft spot on his skull.  In spite of everything, he continued to thrive.

Those negative doctors told my parents it was a miracle that he had lived for a year, and probably wouldn’t survive past two years old. He would never walk or talk.  Once again, they suggested he should be put in a special facility for children with severe disabilities.  Mom said no.

I vaguely remember my mom sitting on the floor with my baby brother laying in front of her while she worked his thin little legs up and down, and around and around to build up muscle in them. He was a little later than most toddlers, but he was running around like a little wild child by the time he was fourteen months old.

As far as talking, well, he was a little jabber box right from the start.  It didn’t take us all long to realize that although he had many physical limitations, he was virtually a genus in the brain department.  He was just an extraordinary miracle in every way.  And thanks to our amazing mom he was given every opportunity to prove it.

Mike was extremely funny, witty and talented, especially when it came to music.  He loved all genres of music.  He could hear a song on the radio just once, then go sit down at his keyboard and sing every word and play nearly every chord.  Writing silly songs and funny stories about people he knew were two of his favorite past-times.

Mom started his schooling with a private tutor who came to our house every day.  But, Mike wanted to go to the ‘real’ school.  He excelled in his classes and graduated from High School.  Then, he worked in an office for the local Forest Service Agency for eighteen years.  Even though he was considered legally blind, he did have some vision and with the use of a special scope and other visual technology, he was able to read and type without too much difficulty.  It was rare to see him without his reading scope and a book.  Stephen King was his favorite author.  Unfortunately, he went completely blind when he was about forty years old and had to retire from his job.

Listening to books on tape and to his extensive music collection became his main activity, but this was something he loved doing.  He always said his room was his favorite place to hang out.  I think one of the most exceptional things about Mike was his ability to overcome and overlook his disabilities.  Although life was not easy for Mike, he was almost always happy and could turn any bad situation into a good one—or a lesson for less accepting people like me.

I remember being in a mall with him once and noticing some teenagers were pointing and laughing at him.  Because of his diminutive size, his abnormally thick glasses and slightly enlarged head, it was obvious he had disabilities.  Encountering rude people of all ages was a common occurrence when we were in public with Mike, and we usually ignored it so he didn’t know some ignorant people were making fun of him.

But, for some reason when we were in the mall that one day, I just lost it.  I told those teenagers how sad it was that their parents hadn’t taught them any manners, they should be lucky they were healthy, and to go look in the mirror because they weren’t perfect, either.  Yikes.

Mike was mortified.  He told me, “Don’t be mad at those kids.  They just don’t know any better.”  Then he added, “Life is too short to be bothered by stuff like that.”  Wow.  I realized then I was the one with limited vision.

Mike passed away on February 10, 2002 of a heart disorder we didn’t know he had, and wasn’t even related to his Hallermann-Streiff Syndrome.  He was asleep in his bed in his favorite place…his bedroom.  He was 45 years old.  That’s forty-five years that he wasn’t even supposed to survive.  Forty-five years that we had the ultimate privilege of knowing and learning from this extraordinary person.

Bright blue and deep purple were his favorite colors.  I think because they were so easy for him to recognize.  He loved it when the sky was clear and blue.  He loved to wear purple shirts.  His enjoyment of food and Mountain Dew was legendary, even though he never gained a pound.  Dorito sandwiches were his specialty.  His goodbye was always ‘hasta la vista, baby’.  When Mike was still able to see somewhat, he really loved to watch fireworks.  His hilarious ongoing commentary during firework displays would keep us all in stitches.  We called one another constantly whenever we heard a new song on the radio that we thought we’d both like.  Sometimes, even now after all this time, I’ll hear a song and think, “I need to call Mike.”  I miss him so very much.

As I look up at the beautiful blue sky, I’d like to think today there’s a big party going on to celebrate his birthday in Heaven with lots of Dorito sandwiches, cases of Mountain Dew and huge fireworks.

Hey, Mike, if you can hear me above all the music and firecrackers, “Happy Birthday, Little Bro. Wow, are you old! You’re the BIG 6-0. Hasta la vista, baby…until we meet again.”

Mike

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