Right now, things are ok. Actually they're better than ok.  I feel like I am in the best place that I've been since Ella's diagnosis. I'm so much closer to accepting that SMA is part of our life.  Do I like it?  Of course not.  I hate it.  But I'm starting to accept that Ella has this disease and we can't change that at this point.  And I'm really starting to go on with life.  And it's becoming "normal" for us. And then there's the eating disorder.  At this point, I'm very close to being considered "recovered".  I only have one more session with my dietitian and one more session with my therapist.  They both feel that I'm ready to move on (as do I).  It's a wonderful feeling. But I think the biggest reason for being in "the best place" is because of our hope.  Ella has continued to improve, which is not something we planned on after hearing her diagnosis.  Children with SMA do not typically improve, r...

The day that kicks off the holiday season has once again come to a close.  From here on out minds of all ages turn toward other delights.  We venture to the celebration of Christmas, taking the holiday season as a way to rekindle our love of humanity.  The rituals, festivities, and traditions of the season accentuates the meaning within them. Thanksgiving provides us with a time to surround ourselves with those close to us; to celebrate all that we have in our lives.  It allows us to sit in contemplation of life itself.  It prepares us to enter into the holiday season with hearts and minds full of generosity, goodwill, and peace. Thanksgiving paves the way for the winter seasons' celebration of Life and Light.  It carves a path for the sharing of good fortune, the extending of a helpful hand, and the realization that life itself is a place in which we can take solace.     Thanksgiving affords us an opportunity to look at our child...

Our kids have developed a response that they have shared with one another.  It seems to be a response that begins at about age two and dissipates at around five.  Therefore Ava has abandoned the response (for the most part) while Henry and Ella are full force in the throws of it. "I just want to" is often heard around our house.  They ask for things and receive the "no" response and instantly the "I just want to" flows seamlessly from their mouths, dressed lightly with the perfect amount of toddler whine. There are times, however, when the "I just want to" response does not elicit a hidden eye roll from me or Lindsay.  These times are actually accompanied by some distress on our part. Ella watches Ava and Henry.  She watches them closely.  She is a bright two-year old and she knows what she wants.  She is just now beginning to understand that her SMA prohibits her from doing many of the "things" Ava and Henry enjoy.  Nonethele...

I walked into Ella's room to get her from her nap.  Something that Lindsay and I do everyday.  There's a "ritual" to the whole process.  Walking into the room the stand-up fan is turned off, then one gets to the side of the bed and turns off her pulsoximeter.  As she lay on her bed patiently we proceed to "disconnect" her from the bipap machine.  She asks to "sit up" and we cradle our hand gently behind her neck, providing the necessary support, as we push her up and into the sitting position.  The cord that leads from the pulsoximeter to her big toe is taken off.  She's free from the constraints that SMA has placed upon her as she slumbers.  She sits in her bed and makes her request to charge (for those who don't know what her "charge" is; it is when Ella pinches [with her index finger and thumb] the skin in-between your index finger and thumb). On this particular day when I went to get her from her nap and the ritual was...

They stick together. They play together. They fight together. They talk with one another.  About everything. We were driving home from spending an evening at church when I came to a red light.  Ella took my attention from the road and asked me, "Where do I go when I die?" My world focused on her face.  I asked her to repeat the question just to make sure I heard her correctly.  I had. My response whizzed its way from my head to my mouth and before I knew it I was telling her that she'll be with God as He holds her close in His hug.  She thought for a moment.  Pulling her finger away from her mouth she returned her gaze to mine and asked, "Can I come back?".  We stared at each other for a moment.  I spoke. "If you want to" I said.  The car behind me let out a friendly honk to let me know the light had changed.  Quickly Ava, Henry, and Ella began talking about heaven (as they often do) and began planning for all the wonderf...