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...

She didn't know I was watching her. She sat in her little manual wheelchair watching one of her favorite movies.  I had a view of her through a doorway in another room.  The angle was such that she couldn't see me but I could see her. I saw the back of her head, filled gloriously with growing blond hair; delicate yet thick as it begins to drape over her tiny shoulders.  Her shoulders lifted slightly as she placed her hands on the wheels of her wheelchair and with precision she turned herself to the right.  Spying an object on a small rocking chair nearby she thrust her arms forward and glided to the chair, expertly stopped one wheel from rotating while she reached with her other hand and snatched up the object of her interest. She grappled with it a bit as the SMA fought her ability to grip the object.  She won.  She had the object in her hand and placed both hands again on the wheel of her wheelchair.  With all of her might, putting her entire ...

We have several different updates... First, our basement renovation is under way! So far the bar has been taken out and was replaced with new cabinets/counter top.  Also, our non-functional closet has been split into two and shelving has been added. Tomorrow (Friday), painting will begin and will continue into next week. On Saturday, the pool table will be taken out and moved to Michael's brother's house.  We're sad to see it go, but glad that it will stay in the family!  We look forward to shooting some pool at Andrew's house in the near future!   At the end of next week, we will be getting the new wood-laminate flooring that will allow Ella to move around in her wheelchair (the most important renovation)! So by next weekend, our basement project should be finished! On another note, in the past seven months, Ella has barely gained one pound :(   However, a month ago, her dietitian suggested that we add cornstarch to her daily form...

I can remember sitting on our deck just a few days after we found out that Ella indeed had Spinal Muscular Atrophy.  It felt temporary.  It felt like if we worked hard enough it would go away.  It seemed that we would only have to live with it for a short while then everything would get back to normal; it would be a distant memory.  I remember thinking about having our daughter in a wheelchair.  I had seen many kids with SMA in their wheelchairs as I researched the disease before the diagnosis confirmation.  I wondered if our house would accommodate such a chair.  Upon talking with Lindsay about it we thought not; simply because of the size of these power wheelchairs but more importantly the age of Ella.  Having a toddler maneuver a 300+ lb. wheelchair in tight spaces and around tight corners is a recipe for banged up walls and broken corners! Fortunately Ella uses a small 7 lb. manual wheelchair in our house.  Through the generosity of ...

Recently, Michael and I found ourselves talking a bit about our house needs.   We've toyed with many different options to accommodate Ella and her accessibility.  From adding on to our current house, to buying an accessible house, to building a new one from scratch...all of which would be extremely expensive (and WAY out of our budget any time soon). But we also talked about how we don't truly know what Ella's needs will be in the future.  With her current progress, we've started to have a new hope that maybe, just maybe , we won't need as many modifications as we once thought.  But we don't know.   So it would be silly for us to start making major house decisions quite yet. But there is one thing that we CAN do, that would help Ella tremendously. Our basement. When we bought this house, we immediately fell in love with the basement.  We knew it would be the perfect "playroom" for our future children.   But unfortunately, it doesn't ...

This past week has been a sad week for our family. On Wednesday we lost my dear grandfather, Mor Far, to a stroke at the age of 89. Mor Far was such an incredible family man...a twin brother, a husband, a father of five, a grandfather of fourteen and a great-grandfather of thirteen. He and his twin brother, John, married their childhood sweethearts, Mary and Katie, who also happened to be sisters.  They have spent their entire lives together and were married for over 60 years.  They were an incredible example of love for our entire family.   Our children shared a special bond with Mor Far.  Although they never met Mor Mor (my grandmother), we will continue to share our precious memories of both her and Mor Far with them.  Mor Far, we love you and miss you terribly.  But we know that you are now dancing in the sky with your beloved Mor Mor :)