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...

We moved to Naperville just before we were married in 2006.  The house we found was everything we were looking for in a house and so much more.  We were excited, enthusiastic, and full of hope and promise. Besides the house being such a great find we knew we wanted to be in Naperville as well.  The main reason was their school system.  Our sights were set on the future, which in our minds held children.  We wanted them to have a great education and were sure they would receive one in Naperville.  Things looked great...a wonderful house that was affordable in a community that held a wonderful school system. Shortly after our marriage we had our first baby (Ava) in July of 2007.  Following Ava was Henry in Oct. of 2008.  Ella came in June of 2010.  Our road of raising a family was well under way. In August of 2011 Ella was diagnosed with Spinal Muscular Atrophy (SMA) Type 2.  Needless to say our lives took a dramatic turn off the ro...

Our basement modification project is complete! In just two weeks, we got rid of our pool table, had the bar taken out and replaced with cabinets/countertop, had the closet reconfigured, had the walls repainted, had new carpet put on the stairs, and had the carpeted floors replaced with wood laminate.  We purchased a more functional couch as well as some new storage units for toys. And we couldn't be happier with the result!  We finally have a basement that Ella can explore independently!! This renovation for Ella has been possible simply because there are so many people who care.  The fundraisers that were thrown have funded this extraordinary project and we will never forget the generosity of everyone who has touched our lives.  Thank you. Here are some before and after pictures of our project (and a video at the end!): BEFORE: The bar AFTER: The cabinets/countertop BEFORE: The old closet AFTER: The new closets AFTER: The new cl...