Back into the depths of sleep deprived nights we go... Since the diagnosis of SMA we've often heard "horror stories" regarding overnight nursing which was one reason we didn't pursue that option earlier.  However, the lack of sleep over the years has taken its toll...so recently we decided to explore the night nursing option.   We have gone 8 full years without a full night's sleep.  Ever since Ava was born in 2007 we have had a baby in the house keeping us up---and now SMA keeps us up.  Eight long, tired years. Through much paperwork and some red tape we finally received notice that Ella qualified for overnight nursing care.  Once it started we could hardly believe the difference we felt after just a few nights sleeping a full 8 hours...uninterrupted.  Wow! Then...the nurse began taking unauthorized nights off followed by a stretch of no-shows.  It was hard enough not having the nurse show up---but she didn't notify the agency or us abou...

      The mailbox brought a Christmas card to our house.  It came from another "SMA Family".  Much like our family there are three kids and the youngest has SMA.      I admired the beautiful pictures of the children, read the words written, and shared it with Lindsay.  Later I returned to the card and looked more closely at the pictures.  Beautiful photography captured the three children sitting on the ground; the two older ones on either side of the younger.  I noticed how the little one was nestled lovingly in-between the two.  To an unfamiliar eye one would never know that the baby of the family had a neuro-muscular disease which can compromise the ability to sit unassisted.  I knew though.      I knew and I was amazed at how the siblings were positioned to provide sitting-support for their younger sibling.  They all "leaned" on one another in a way that would depict that all three children had ...