Today is August 26, 2013.   Two years and two weeks ago (August 12, 2011) my daughter, Ella Sabine Casten, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2.  A life changing event for our entire family.  While SMA ravishes the physical body, it leaves the mind untouched.  And oh what a mind it is!  Kids and adults with SMA are very bright; very intelligent.  The ability to adapt to a disease that methodically deteriorates their muscles, leaving them weaker as time goes by, is highly admirable...to say the least. As SMA challenges the individual to perform daily tasks, their tolerance for frustration remains high...they persevere and fight, struggling through what amounts to extremely demanding activities; and they always perform these activities with a determination unmatched.   Within the world of Spinal Muscular Atrophy, those afflicted would have just cause for viewing life in general as a cruel ...

This morning I watched our baby girl leave our house on a school bus that would take her to her first day of preschool. It was a moment of mixed emotions for me. I didn't know what to expect from Ella.  Would she cry?  Would she be scared? I knew that Ella has been so excited to start school, but I also knew that she was a little nervous about taking the bus by herself. But in usual "Ella" style, she was a champ :) She was all smiles this morning getting on the bus.  But once she was on the bus, she was very serious.  I know she was a little nervous, but I think she was also proud.  Proud to be a "big girl". As the bus drove away, I had an empty feeling in the pit of my stomach.  I've never not had Ella at home when I was there.  It was hard to watch her leave.  She's still my baby, after all. When I got back in the house it was quiet.  Very quiet.  Henry was still home (he starts preschool ...

Ann Reid Early Childhood Center Ella is starting preschool next week.   She's so excited!  She can't wait to be a big girl and go to school like Ava and Henry. I'm also looking forward to it :)  For the first time in six years, I will have a few hours to myself every morning during the week!  I'll get to run errands alone, do laundry alone, clean alone, and maybe even do something for myself once in a while! But I'm also finding myself feeling nervous.  Not the kind of nervous I felt sending Ava and Henry to school for the first time.  That's  normal  nervous. This is the kind of nervous where my heart aches for Ella.  What is she going to say when other kids ask her questions?  The questions that I've always been there to answer? "She's in a wheelchair because she has a disease called SMA and she can't walk." "Those leg braces keep her feet in the right position." "That tube gives her nutrition because she...

Yesterday Ella's gait trainer arrived and she is so excited to have it! The gait trainer is a piece of equipment that allows Ella to practice walking without our assistance. As soon as we put her in it, she started walking right away and had no problems moving the gait trainer on her own.  Our vendor said that within a few months she'll be a pro! Ella will use the gait trainer daily at home and at preschool, which will help both her bone density and muscles :) Of course Ella picked the color to be purple and it even has a removable tray for her iPad! We're all very excited to have this new piece of equipment for Ella!

It's a man's natural tendency; and  fatherhood brings it out on a daily basis, often time several times a day (or night).  Maybe it's something in our genetic make-up.  Maybe it's something that society has instilled in us.  Perhaps it fulfills an emotional need which, in turn, brings us closer to those we love; those we care about; those in our life. It's the need to fix.  If your child loses something there's a certain satisfaction in finding it for them when it seemed hopeless.  When something breaks around the house, out comes the toolbox, the tape (often times it's duct tape), or the hammer (hammers fix everything!).  When finances prove to be a challenge, manipulating numbers and figuring it out is the order of the day.  When someone you love gets sick, the need to care for them, comfort them, and be with them until they are better resonates. A father's place in the family can be precarious at times.  Balancing the societal expect...

Please share with someone who might not know about  Spinal Muscular Atrophy...

August is SMA Awareness Month What does it mean to be "made aware"?  How does one tell another of a life-threatening condition?  Where does one begin? Spinal Muscular Atrophy is nothing short of a devastating disease that has been named the #1 genetic killer of children less than two years of age.  Remarkably it has also been named the one neurological disease of over 600 that is closest to a cure (NIH, NINDS). Closest to a cure.  Those words ring chimes of hope in the hearts and minds of each and every family that has lived, is living, and will live a life with SMA. Researchers work tirelessly, putting to use their extraordinary intellects, unequivocal talents, and sheer compassion for those they are trying to help as they reach deep into their chosen fields making SMA the #1 neurological disease closest to a cure. Doctors and therapists, from a variety of disciplines, show genuine compassion while working wit...