Today we are mainly just watching the Macy’s parade and enjoying Bailey’s excitement as she sees her favorite characters like Barney and Elmo. We hope everyone can take a moment or two and reflect on what we are thankful for this season, even, and especially, our SMS kids!

Take care, Mike

So the wife and older daughter are away this Saturday at a Thespian festival.  Which means Bailey and I get to spend the day together for a little daddy/daughter time.  Bailey usually is pretty good for me during these times.  Maybe because I let her do pretty much what she wants like watch movies or play on the computer.  Saturday’s are usually, for me, filled with home or vehicle projects and today is no exception.  Today’s efforts include hanging a sign in our kitchen and replacing all four shocks on my truck.

Bailey loves to help, too.  She finds great joy in “helping” us around the house, uh, as long as it’s her idea, that is.  If we try to ask her for help, she typically just runs off and begins to throw  a fit or make excuses for why she can’t do it.  Kinda like when she is in one of her (many) moods where she wants you to hold her and as soon as you take one step in her direction, she bolts the other direction.  A few rounds of this back and forth almost always yields a “meltdown”.

Oh, well, gotta go and get the truck pulled into the driveway for repairs.  Bailey likes to ride in the front seat as I pull up the driveway as for her it is an infrequent departure from her perennial back seat station.  She also has said she is willing to “help” once again with the repairs.   I love this kid and her heart.

Bailey is really looking forward to her Valentine’s day party this weekend.  Her Sunday school class for special needs kids is having a party on Saturday and she is very excited to go.  It will also give me and my wife a couple of hours of free time as my oldest daughter will be away at camp the same weekend.  Wow, two whole hours without any kids.  This isn’t the norm, for sure!

 I generally have shyed away from blogs and such but something recently compelled me to create one for no real reason other than to see if I could do it and of I had the desire to keep one going.

This blog, I think, will largely be musings from my life, our family’s life really, with our daughter Bailey, who has Smith-Magenis Syndrome.  Smith-Magenis Syndrome (from here on out referred to as SMS) is a partial deletion of one of the two in the 17th pair of chromosomes.  This deletion is fairly rare and many physicians have never heard of this syndrome.  In fact the geneticist that diagnosed her had to pull information off the Internet to give to us because there just wasn’t that much available in medical literature about it.  Current estimates put the rate of occurrance at around 1 in25,000 births.  Pretty rare, but certainly not as rare as some syndromes we have heard about.

Instead of going on and on about the particulars about this syndrome in the blog, I will invite you to use the link to the right called “Smith-Magenis Syndrome Info” to find out more.  There will be more info there than I could ever hope to explain on this simple blog.

So, thanks for checking this blog and being interested in  SMS.  I hope this journey is as interesting for you as the reader as it is for us living it!!