Eight Sleepless Years---continued...(by Michael)

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 about her absence.  Each of those nights we were up waiting for her to come (her arrival time was 10:00pm)...so by the time we were notified she wasn't coming it was 10:30 or later.  Couple the late bed-time with numerous wake-ups to care for Ella throughout the night we found ourselves right back to days of operating on limited rest.  

Needless to say we spoke with the agency.  It won't be until after the new year until we start the process of finding a new nurse and hopefully a back-up (although simply getting a primary nurse is hard enough as it is let alone a back-up).  Of course, when we go through the interview process we will be absolutely sure to indicate our expectations as clearly and respectfully as we can.  

Ella deserves the care overnight and our family must get a good night's rest in order to function to our fullest each day; our kids need the rest to learn, Lindsay and I need the rest to teach, and all of us need the rest in order to run our daily "life with SMA" as smoothly as possible.

Tired & Sleepless in Naperville...

Natural Leanings...(by Michael)

     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 developed typically up to this point in their lives.  The smiles in their eyes spoke of a love for life, family, and the Christmas season.  They were looking slightly off center of camera as if captivated.  

     It brought me to contemplate the role that siblings play in the complex world of SMA.  Our own children, Ava, Henry and Ella, have similar moments captured on film...the "untrained" eye would never suspect anything was awry based on the picture itself.  The physical support speaks well of the support siblings knowingly and unknowingly provide for their affected sibling.

     The type of bond that is forged between unaffected and affected siblings in terms of SMA is an amazing phenomenon to witness.  With the innocence of childhood, the unaffected siblings take it upon themselves to care for one another in ways that simply cannot be taught.  The affected sibling provides an avenue for the development of a compassionate, nurturing environment. The whole time, however, they treat each other as typical siblings might--fighting, bothering, and all that comes with brotherhood and sisterhood.

     We can learn much from the simple dedication an unaffected sibling demonstrates towards an affected sibling.  We can take much from their natural examples of caring without hesitation, supporting without distraction, and loving without self-denial.  

     Looking at the Christmas card I couldn't help but project the image into the future...for those three kids and for mine.  The scene that enveloped me was one of caring, nurturing adults who leaned on one another during all the times of their lives.

Merry Christmas...