It seems like an eternity since I've sat in front of my computer to write a blog.  The days whiz by like lightning and the nights quickly slip away.  It seems as though the complexities of life get more entangled, the business of keeping our heads above water more ominous, and the joys in seeing our children flourish with new-found adventures flood our senses. As we begin settling ourselves into a routine we also find ourselves picking up thoughts, conversations, anticipations, and the uncertainty of the unknown right where we left them just prior to the move. The other day, as Ava and Henry were outside playing, Ella wanted to take a respite with Sasa on the couch.  She found her familiar spot by Sasa's head--and Lindsay and I sat with her in the family room.  Our conversation began with something about the house; some project among a million that needed our attention.  It quickly turned to Ella's hips. We had our consultation with her neurology team at ...

It requires some work. It needs some elbow-grease. It calls for some love. We have all three to shower upon it. Our new home.  A well-built, 4-bedroom house surrounded by a large yard, neighboring people who are simply fantastic.   When we stepped into this house two months ago a feeling of comfort, of security, and "knowing" filled us.  It was as if the house tapped us on the shoulder and motioned us toward it.  Many people commented that we seemed so "calm" during the process of buying the house...and we probably appeared that way.  Truth be known, we had a sense of calm about us simply because of what the house meant to us; because of what it promised. Little did we know that the promise it boasted came with so much more...namely a neighborhood that we've dreamed of and a place that holds such potential for Ella's independence.    Our children can, for the first time in their lives, exit the back door and play with kids from the ne...

circa: 2006 We found a home here, We're leaving the house. We found a family here, We're leaving our footprints. We found our church here, We're leaving with prayers. We found traditions here, We're leaving with the promise of more. We found ourselves here, We're leaving stronger than we came. We found our pleasures here, We're leaving with memories abound. We found disease here, We're leaving with an appreciation for life.  We found life and death here, We're leaving with a deeper understanding. We found our weaknesses and strengths here, We're leaving the latter behind and the former in tow. We found our skills here, We're leaving more confident. We found friends here, We're leaving richer for it. We found love here, We're leaving surrounded by it wholeheartedly.

Rummaging through years of stuff elicits a reminiscent quality that so easily takes one back to different times.  Some of those times seems easier, others more difficult.  Some feel simpler while others dredge up the confusion that was present when it was actually occurring.  Some make you smile while others bring back the pain endured for whatever reason.  Still some take you into a world where you almost re-live the events surrounding the object. The object below is of the last kind...one that brought me to a place and held me there for some time. Before Ella was diagnosed with SMA Type 2 we had no idea what was really happening with her.  All we knew was that she was missing developmental milestones and struggling.  One of the hardest aspects of all of this, as a parent, was the feeling of helplessness.  Watching your child struggle, fight, and exude extreme determination to accomplish something they should be able to easily was torture. ...

Yesterday I took Ella to her biannual checkup with her orthopedic surgeon, Dr. Grayhack, at Lurie Children's Hospital.  She goes every six months to check the curve of her spine, as well as other joints. I brought with us the disc that had her most recent spine x-ray, but Dr. Grayhack decided to also do an x-ray of her pelvis as well, so that we'd have a baseline as we've never looked at it up to this point.  We all assumed it would be fine.   But it wasn't. Ella's left hip is two thirds out of the socket and her right hip is on it's way.  Her hips are dangerously close to being completely dislocated.   This is not uncommon for children with SMA.  With Ella's muscles being weaker, they aren't able to hold her joints in their proper places.   But this came as a huge shock to all of us, as Ella's hips appear to be fine from the outside and she has never complained of any pain in that area.   But a dislocated hip can become a prob...

Ella playing by herself in the basement The small sticky pads that sit under Ella's eyes, covering and protecting her skin from the straps of the bi-pap mask, had one large drop of moisture on each of them.  The moisture came from tears streaming down her face, being absorbed by the protective pads.  The tears a result of fear. Fear of being alone.   Ella has developed this fear as of late; not wanting mommy or daddy to venture too far from her; wanting to sit on our laps more often; not wanting Ava to climb up into the top bunk...out of sight.  She simply doesn't want to be alone.   We know that this fear is something that most kids go through.  The timing, however, promises to make things a bit more challenging.  We are set to close on our new house in late April.  Once that happens the kids will each have their own bedroom.  They know this.  Ava, being six years old, is looking forward to having her own space; Henry has h...

The feeling was warmth. The feeling was inclusive. The feeling was as if arms were wrapping around us in an eternal hug. St. Timothy Lutheran Church, our church, brought to us a night of warmth, inclusion, and hugs as they hosted a Bingo Fundraiser for Ella. Young and old came from near and far to sit for an evening of white elephant gifts, candy and popcorn, pizza and pop surrounded by the infectious sounds of the classic bingo game.  A night that is etched not only in the memories of our family, but in the minds of so many who were involved. A parishioner approached me the day after the fundraiser to express her exhilaration about the event.  She knew that the Bingo Night was successful simply by the attendance therein, yet she marveled at the young people who took a part in it. She was thrilled by the fact that compassion was experienced by these young people first-hand rather than them simply being told to be compassionate.  She called it their "witnes...