The days wear on.  They often blend one into the other.  We've established a routine that currently works well.  We know that will change soon as the disease progresses.  We know that. There seems to be two worlds in which we reside.  The worlds of raising children with and without special needs.  These two worlds often sing in harmony while clashing violently with each other.  They sometimes compliment one another and still, in the same breath, put the other down.  Each world fills our lives with demands, vying for our attention, our love, our time, and our strength.  Little, if any, of these resources are left behind...and what is left for us, we cling to with all we have.  We hang in there, if only by a thread on some days or by a rope on others, we hang in there.  It's our life. As our children grow, we too, have grown.  A maturation has developed to deal with the conditions associated with the terminal ill...

There seems to be a shift in the air.  Something is going on; developing.  The awareness of what is really happening is decidedly coming to the forefront.  There is no stopping it.  There are no aversion tactics.  There is no way around it. The other morning Lindsay and I listened to Ava sing to Ella.  Curled up on Ella's bed early in the morn, Ava sang a tune to Ella that reflects one of her deepest desires.  The words: simple.  The melody: pure.  The meaning: eternal. "Goodbye SMA, bye, bye, bye SMA.  Goodbye SMA, bye, bye, bye SMA". The exchanged glances that Lindsay and I shared were ones of "how cute is that?" coupled with "the time is coming for an explanation..." Ella has been under the impression that her inability to walk, run, jump, or even stand is directly related to her age.  With her whole heart, as of recent, she believes that when she is older she will indeed do these things.  She is only now...

All of a sudden, Ella has become Little Miss Popular... Last month, she was asked to be the cover girl for a Lurie Children's Hospital publication called, "The Child's Doctor".  It is a magazine/booklet that comes out quarterly, and the Spring's issue is going to be about SMA, written by Ella's neurologist, Dr. Nancy Kuntz.  The publication is distributed to about 10,000 pediatricians, so we are very excited for information about SMA to be given to so many doctors! Of course, when asked, we were thrilled to have Ella be on the cover (and also on the inside of the publication).  We went downtown to Lurie Children's for the photo shoot with Dr. Kuntz and had a great time!  And for fun, the photographer even took some pictures with Ava, Henry and me in it as well! We're looking forward to receiving the publication once it comes out! Shortly after the photo shoot from Lurie Children's, we were contacted by a woman in their PR department...

Sometimes. Sometimes I cannot handle looking at what SMA does to our daughter. Sometimes I grow angry at what lies in front of me. Sometimes I want to hide away, never to see the light of day. Sometimes I feel helpless. Sometimes I dread getting up in the morning to face another day. Sometimes I sit and think of nothing. Sometimes I wonder how it will all end. Sometimes I reach for things too far out of my reach. Sometimes I grow jealous of the lives of others. Sometimes I pretend that my life simply never existed. Sometimes I desire to run through a field; never to look back. Sometimes I imagine the end of the world. Sometimes I pray for an answer. Sometimes I shake my fists at the Lord. Sometimes I sit in quiet contemplation. Sometimes I laugh at the irony of life. Sometimes I remember what dreams I once held. Sometimes I cry for no apparent reason. Sometimes I joke with stinging sarcasm. Sometimes...

The delights of a grandchild. The thrills of a grandpa. The love that circles between. Our kids' eyes are filled with happiness each time they spend time with their grandparents.  They embrace them with a love that is unsurpassed.  They keep their spirits high, their arms open, and their hearts filled with joy over who they are as people...just as grandparents do. All three of our kids adore their extended family.  The newest addition, Ella's cousin Caroline, is fast learning the pleasures of family as well! I'll let the pictures tell the story...