A four year old drew this picture. She imagined it in her mind. Her family was all together in the family room and s he sang as she drew it. Her parents were sitting, enjoying a glass of wine, playing with their youngest. Her younger brother was playing with his new toys he had received from his birthday. She worked on this picture for a good twenty minutes. When finished, she presented it to her parents; who were taken aback by the sheer joy expressed in the faces of those drawn.  A child-like quality permeates this picture--not because of it's design being at the hand of a child but by the message that is spoken by it. The message that rings true from this "Ava Original" might go something like this:   "This is my sister.  I am and always will be here for her.  I notice her, I appreciate her, and I love her.  This is my sister.  I will take care of her all the days of her life.  I'll laugh with her, cry with her, h...

Two-and-a-half months ago Ella was diagnosed with Spinal Muscular Atrophy Type 2. So much has happened since that day. Lindsay and I have entered into the world of caring for a child with special needs; something we never thought would be part of our lives. We have been thrust into an emotional hurricane, spinning us around with a force that leaves us hopeful one moment and in despair the next. The physical toll that surrounds our days continues to drain us as we seemingly need more rest despite how much we think we are getting. The financial burdens that loom in the distance produces a stress that lies underneath the surface...ever-present. Spiritually we are being called to open ourselves up more to God as we seek refuge in His care. I've noticed much in the past two-and-a-half months--more so in the past week... Ella has regressed physically yet has progressed mentally. She fights her SMA by being smarter than it is. She finds ways to do what she wants and if...

Finally, I can write about some happy days that we've had... Lately, the downs have far outweighed the ups, so it's been hard to get away from the dark place. But the past few days have been very positive for Ella, for Ava & Henry, and for Michael and me. Let me begin by showing you a picture of what our family room looked like a few days ago... Pretty nice (although it RARELY looks this clean, ha ha). However, with Ella getting her new Micro wheelchair (it came this past Tuesday!), she does not have the strength required to maneuver it on the carpet (which also covered the living room and dining room on the first floor). We knew we had to make a change to somehow accomodate this new (yet tiny) piece of equipment. After all, what good is a wheelchair that Ella can't use in most of our house? We have been very hesitant to do any kind of home modifications to our house, not knowing what our future house situation will be. Any true "handicap accessible" modi...

Sometimes I wish I could stop time. I know there is going to be a moment when I realize that I can no longer pick up my Ella the way a father does...I know I will never be able to play upsee-daisy with her.  I won't be able to wrestle with her, tickle her until she screams out in laughter, or put her up on my shoulders as we walk through a long day at the zoo. The reality of what's happening is drilling its way deeper into my life.  I sit at this computer, wondering how I am supposed to rummage through my thoughts and feelings.  I look at the world in a whole different way.  I look at myself in a whole different way.  I look at life in a whole different way. Ella can waltz her way into anybody's heart.  She has a beautiful smile that lights up her face and melts those around her.  She seeks out people in a crowd and makes eye contact, whisking them into her world of delights.  She easily accepts all and trusts those who care for her....

I've been wanting to write a blog post for the past few days, but honestly, I haven't had the strength. I've started writing a couple times and then had to stop. Usually writing out my thoughts helps me feel better, but I think I was in such a dark place that it didn't matter. A dark place. I visit there quite often these days. Each time is a little darker than the last. I keep thinking, "Why isn't this getting easier? It's supposed to get easier as time goes on!" But I guess it doesn't work that way with SMA (or any other progressive disease for that matter). Right after Ella was diagnosed, I knew it would take some time to get used to the idea that she has this disease. What I didn't know (or realize at the time) is that we'd be watching her get worse. Day after day. Week after week. Month after month. It's been over two months since Ella was diagnosed. The decrease in her abilities since then is incomprehensible. S...

The mind is a vast, uncharted, collection of emotions and thoughts,  that often leads us in directions and down life paths that we never knew existed. The mind allows the circumstances that surround you to fill up your days and nights with an all-consuming demand for attention. The mind allows us to gather our courage sometimes forsaking our own well-being in the name of love. The mind makes attempts to guide us despite what our hearts may beckon. This results in a dichotomous relationship that requires energy unfounded to overcome. The mind is ours to live with, moment by moment, for our time on this earth. Lindsay and I have found that our minds are currently producing a dull, numbing experience.  It is more than lack of motivation.  The ache that resides deep within our brains makes for a world that is surreal.  It keeps us hostage much of the days and nights, ever increasing its need, its demand, its necessity for our attention yet reciprocates wi...

Lindsay Ruth Casten~~ When Lindsay was pregnant with Ava we were quite naive about birthing a child.  Our doctors feared that Ava would be too big for Lindsay to deliver.  They told us if we attempted a natural birth we would risk shoulder distocia (baby's shoulders get stuck and they have to break them to get it out).  Of course we feared for our unborn baby and went with the recommendation of a C-section...not knowing the implications for future pregnancies.  Ava was 7lbs. 3 oz.  She would have fit just fine. We worked through the anger and frustration and then we were pregnant with Henry.  We went into the pregnancy with all the intention of having a VBAC (Vaginal Birth After a C-section).  Everything was going well.  In the last few weeks of the pregnancy, Lindsay's blood pressure began rising.  It continued to rise until just a day or two before his due date when it was extremely high.  The doctor order...