February is coming to a close.  The shortest month of the year yet it feels like it dragged out forever. Starting with the frigid weather that kept everyone indoors.  As the month wore on so did the bothering between the three kids.  Much crying, whining, teasing, and screaming filled the house, echoed off the walls, and sent Sasa with her tail between her legs more than I've ever seen before. We closed Mama Bracelets and had to work through the task of tying off all the loose ends...some still exist. At first we thought closing the business would be an easy thing to do emotionally speaking, but we found out different.  We actually had a twinge of sadness with the closing of Mama Bracelets & ellaWEAR Jewelry.  Mind you, we are not thinking twice about this decision, just didn't expect the emotional piece to hover about. We put our current house on the market.  Needless to say, leading up to the time it went on we did all the necessary "touch-u...

Months of talk.  Weeks of making decisions.  Days of planning.  Hour after hour of final preparations.  Minutes to seal the deal. Our house is officially on the market as of Feb. 19, 2014. We reached out to family, friends, and strangers with a plea for help...a plea for Ella.  We had always known, since her diagnosis was confirmed in 2011, that our house would either need major renovations to accommodate her needs or we would have to move into a house that could do the same. It became quite clear the path we must follow.  Our current house, while we love it, simply would present us with a major financial obligation to properly renovate it for Ella.  After contemplating the "sign-post" in the fork-in-the-road we made the commitment to raise money, sell our house, and find a new home. The outpouring of generosity from so many people, near and far, close to our hearts and strangers, allowed us to actually make our plans to move forward.  T...

Several people, over the past two years, have spoken to us about "Make-A-Wish" for Ella.  We've hesitated to pursue this for Ella thus far because we felt she was a bit too young...we really wanted her to actively be part of the whole process. We put it on the back burner and went on with our lives. Then, about a month ago, the nurse at Ella's school called us to say that she nominated Ella for a wish through the "Make-A-Wish" foundation.  This came at an opportune time in terms of Ella's age.  Lindsay thanked her for the nomination and we began working toward the wish to be.  The "Make-a-Wish" foundation has contacted us and let us know that she was approved for a "wish". We will meet with the "Make-A-Wish" volunteers so they can get to know Ella and us and get things rolling! We are so excited!

Two logos that have become a part of our family.  Mama Bracelets and ellaWEAR Jewelry.  Both businesses inspired by children, both businesses benefitting children. Mama Bracelets started out as nursing reminder bracelets.  It quickly evolved into personalized jewelry as well as jewelry that supported various causes (Rett Syndrome, Autism, Lung Cancer, and SIDS).  Once Ella was diagnosed with Spinal Muscular Atrophy (SMA) the focus turned toward SMA research support.  To date Mama Bracelets and its customers have domed just over $3,200 to the research efforts through organizations such as Families of SMA (FSMA) and the Jennifer Trust for SMA (JTSMA) to name two.   In 2013 ellaWEAR Jewelry was created to help fund the purchase of a home for Ella and the necessary modifications therein.  Borrowing the "party" idea we raised over $2,500 in pure profit for Ella needs. Both businesses rolled into one with the goal of helping children & fami...

I carried Ella down to the basement as I've done for the past three-and-a-half years.  The trip down has gotten more precarious.  Her size, weight, and lack of a center of gravity makes for a dangerous trip each time it's taken.  If there's a toy or anything on a stair it could lead to disaster. As we reached the bottom and found her little wheelchair she said to me, "I wish I could walk.  Then you wouldn't have to carry me." "I know you do.  And maybe someday you will."  I replied.  "They're working very hard to get rid of your SMA." "Ok." was all she ever really says when we have these brief conversations about her walking.   A few days later we were out and Ella saw a little girl who was just about her age.  The little girl was crawling on the floor pretending to be a baby.  Ella watched.  Her expression was stoic.  I can only imagine the thoughts that may have been going through her head.  The little girl ...

Casten's Key to Learning I have been teaching 4th Grade at Lincoln Elementary School (Elmhurst, IL) since 2001.  Before that I worked as a Daycare Supervisor & Summer Daycare Coordinator/Supervisor for Hephzibah Children's Association (Oak Park, IL) for 8+ years. Needless to say, I enjoy helping kids and their families.   When our oldest, Ava, was born we decided to have Lindsay be a stay-at-home mom as we planned for two more kids.  We knew that going from a two-income family down to a one-income family would be difficult at best.  We were right.  Along came Henry and our budget grew tighter.  We worked our budget, cut corners where we could and planned for our third child.  Ella came to us and we were feeling like a complete family. Enter SMA.  The diagnosis obviously threw us for a loop.  Quite unexpected and made quite a difference in our plans.  We adjusted our budget, our lifestyle, and our existence. Lindsay had ...

Something's been happening to me as of late.  Every time we begin talking about moving in order to provide Ella with a house that will work for her my stomach turns, my mind shuts down, and my defenses go up. I listen to what Lindsay has to say and it all makes perfect sense to me.  I don't, however, want to think about it.  For a while I really didn't understand why, either.  I just knew the topic was something I'd rather avoid than engage in a conversation about.   After trudging through the latest conversation and offering little to it, I began really thinking about why my world seems closed up around this topic.  And then it hit me...like a ton of bricks. The life changing event that we are embarking on further brings the reality of SMA to the forefront.  My natural tendancy is to not want SMA to exist at all, least of all in our own child.  But it does.  It exists.  It exists in our child.  It's there. And it really ...