The Bahrenburg Family

by Liz Bahrenburg

It’s amazing how significant numbers are in our lives….

I thought the number 18 was significant… when I was finally old enough to leave the family nest in Larchmont, New York (a suburb thirty minutes north of New York City) and enter Dartmouth College in tiny rural New Hampshire.   What I didn’t realize was that the numbers 620/690 were going to be the real magic in my life…when I met my future husband, Jim, at a fraternity party.  His brilliant pick-up line was “What were your SAT scores?”  Having been thrown so off guard, I actually answered his question, to which he exclaimed, “Wow, so were mine!  We should get married!”  If only I had married him then… Instead 10 became my new lucky number – when I finally married Jim on October 5, 1996 exactly 10 years to the day we met!

It seems that the next phase of our life was taken over by significant numbers in the form of dates.  That first magical date was 8/9/99, when I gave birth to our first son, Spencer James.  Motherhood changed my life.  I told the toy company I worked for that I would see them in three months (and I meant it).  However, one look at Spencer’s cherubic face along with the infectious sound of his giggle and I was hooked!  Working Mom - good-bye, Stay-at-Home Mom – hello!  Life became morning strolls, classes at Gymboree, play dates, reading books over and over again, singing silly songs and endless cleaning from diapers and toys to clothes and sippy cups… 

Meanwhile, just before the birth of Spencer, was the birth of a new company for Jim; a company that required Jim to commute to San Francisco (from Los Angeles) three days a week.   Finally, with a year of commuting under Jim’s belt and another baby on the way, we decided a change of pace was in order.  Thus, after 10+ years in Los Angeles, we moved to Sonoma.  Shortly after arriving, our next magical number was 4/24/01, the day our second son, Skylar William was born.  I wish that at this point I could say that we all lived happily ever after.... 

9/11 is a number that has affected so many of us and will weigh heavily on our hearts for a very long time.  For the Bahrenburg Family, 2/22 is the number that changed our life, as we know it, forever…. 

On 2/22, our precious baby boy, Skylar, only 10 months old, was diagnosed with a terminal spinal disease called Spinal Muscular Atrophy (also known as SMA).  A simple visit to the neurologist with a small concern that Skylar was not sitting up yet, turned into a nightmare.  Because he was so verbal and sociable and had very good fine motor skills, we figured it was probably his size… being off the charts in length and weight.

When we received the news, my husband and I were in shock.  Even our family and friends, who saw Skylar on a regular basis, could not believe his diagnosis.  SMA is the number one genetic killer of children under two and none of us had ever heard of it!  Plus, there was no history in either of our families of any sort of neuromuscular disease. 

SMA is a disease of the anterior horn cells (the main motor nerves that are located in the spinal cord and control the muscles).  SMA affects the voluntary muscles that allow kids to sit-up, crawl, and walk.  SMA does not affect children’s cognitive skills.  Generally, kids with SMA are extremely smart and very social. 

There are three types of SMA – Type I (when kids can not sit-up and have difficulty breathing/swallowing), Type II (when kids have difficulty crawling and can not walk), and Type III (when kids walk but eventually end up in a wheel chair).  Generally, the prognosis is not good for children with Type I or II because SMA eventually affects the chest and respiratory muscles resulting in respiratory failure.

We are not giving up hope, though.  Skylar is a very happy, smart, and sociable child.  (At only one year old, he already has an array of vocabulary words including his first real two-syllable word “tur-tell” which he exclaims while moving to the beat of his favorite, “top-hat toting” singing and dancing turtle.)  His sunny smile, bright blue eyes, and infectious personality can light up any room.  Every day, doctors and scientists are getting closer to a cure.  Skylar recently participated in a research study in Salt Lake City.  After initially being classified as a Type I, he has been given a new Type II classification as a result of this new study.  This is very encouraging news for us. 

Jim, Spencer, Skylar and I are so fortunate to have the love and support of so many family members and friends.  The love and support I personally have received from friends (and acquaintances) in the Mother’s Club has been invaluable.  I don’t think I would be handling the situation as well as I have been without you.  Thank you from the bottom of my heart!

It’s very hard finding something good in this situation.  However, if I had to name one thing, it would be the realization that our time with Skylar and Spencer is very dear.  So we make every moment count and every memory precious.  It is very easy to think that there is always tomorrow but sometimes children are whisked away in the blink of an eye through a freak accident, sudden illness, etc.  So hug your children often and make every moment count!  We know we will.

So now I end my story on our new lucky number.  That number is 1.  Skylar just celebrated his 1st Birthday.  I know by this time next year, our lucky number will be 2, when Skylar celebrates his 2nd Birthday.  And God willing, our lucky number will continue to grow in the years ahead.

All Our Love and Thanks,

Jim, Liz, Spencer, and Skylar

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