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...

She works hard. She gives it her all. She's quite the girl. We're tired.   Sleep continues to elude us.  We put our kids to bed and go downstairs.  We talk, pay bills, answer e-mails, and work on Mama Bracelets.  You would think when we finish those things we would march ourselves up to bed.  We don't.  We stay up. Sleep isn't what it used to be.  Waking up at 3:00 am every night with your mind twirling thoughts around, as if each one were trying to grab a hold of you so it could be the one to scream its needs to you, awaits us.   Sometimes when I wake up, I find my way down to the family room, where just hours earlier the kids were playing.  Toys are away, the furniture has been put back together and silence rules the room.  There is an echo; a sort of buzzing that I can discern.  My head grows quiet and I sit there.  My body is still as I begin to lose awareness of it...I get lost in a world filled with th...

The one thing that amazes us is how children adapt so easily. At one point in her life Ella moved herself the only way she could, by pulling herself with her two arms...dragging her feet behind her. She didn't make any great distances, but she moved...and was happy for it. As we realized something was not right with her development it became increasingly more difficult to watch her struggle with something that we simply took for granted in babies. Her mobility ever since has been a source of high frustration for Ella and anguish for us. We thought, as many people did, that we could simply carry her more than we did with the other two. Maybe make up for her lack of mobility that way. We have come to realize that is not a realistic option. SMA causes motor neurons to die. With this demise of the neuron, muscle weakening and atrophy occur not far behind. Children become increasingly "floppy" and cannot help caregivers as they hold and move them. Injuries ...

Ella watching herself in the mirror as we waited for the doctors at the MDA Clinic. Dr. Silver wanted to see Ella four months early based on what we reported to him regarding the regression we have seen in Ella. Dr. Silver runs the MDA Clinic at Shriner's Hospital in Chicago, just outside of Oak Park, Illinois. This clinic is set up like none other we have ever seen or heard of. Patients are scheduled all at the same time, 1:00 pm, and each get their own room in the MDA Wing. After everyone is weighed, blood pressure is taken, and height is measured, the "rounds" begin. Doctors, nurses, therapists, specialists, residents, students, and professionals rotate from room to room, popping in and out as necessary. Working together under the same umbrella of caring for each individual child in each room. They bounce ideas off one another, collaborate with each other, discuss, listen and include family opinions while problem-solving. They create an atmosphere of shar...

A different level of reality hit me this week...more like, ran me over . Lindsay and I will be taking Ella to see Dr. Silver and his team at his MDA Clinic at Shriner's Children's Hospital in Chicago on Monday (10.10.11).  This appointment was originally scheduled for February of 2012, but after some correspondance with Dr. Silver regarding Ella's regression, he wants to see her now.  A hit of reality right there. On Tuesday (10.11.11) we will be visiting Marianjoy Rehabilitative Hospital in Wheaton along with National Seating & Mobility to have Ella evaluated for a power wheelchair and possibly a stander.  Wham...another blow. On Saturday (yesterday), Lindsay and I sat with Mobility Works and discussed, in detail, the various options we have in terms of having a vehicle that will be able to transport Ella and the other two kids safely.  Wow--the technology they have nowadays~~ While these three events certainly contributed to the "different level o...

Today we went to a playground. Usually when we go to the playground, there's not much for Ella to do. She can swing in the baby swing. And that's about it. We'll put her on the ground for a little while, but she either gets bored or starts eating the wood chips, so she doesn't end up there for very long. But today, we went to a playground that had the hard rubber surface, so we brought Ella's wheelchair. She had a blast! For the first time EVER, I had to pay attention to where Ella was! It was wonderful. And let me tell you, keeping track of three young, mobile kids at a busy playground was a lot of work! But I loved every second of it! When we were ready to leave, we had a bit of a walk to get to the car and we had to go through some grass. Ella was getting a little tired and isn't strong enough to maneuver through grass, so I showed Ava and Henry how to help her by holding her hands. Priceless!

Yesterday Ella started aqua therapy. She'll go to her PT's house once a week, where she has a warm water therapy pool (nice!). Ella really enjoyed being in the water. It's a great place for kids with SMA, because their muscles don't have to work nearly as hard against gravity. Below are some pictures from her first aqua therapy session as well as a video at the end :)

Right now I'm angry. I'm finding that the first half of each week is becoming really hard. We used to be motivated by her therapies (on Tuesdays). Now we're just discouraged. Ella has been doing PT and OT every week through Early Intervention (EI) for a couple of months now (PT is Tuesday mornings, OT is Tuesday afternoons - with lunch and nap in between). In the beginning, we were learning about great skills to work on with her and tools (such as orthotics and sensory toys) to help her achieve goals more efficiently. But it seems that for the past month or so, similar phrases have been coming out of our mouths (both Michael's and mine as well as Ella's therapists)... "Sometimes she can have bad days." "Maybe she's tired today." "I wonder if she's getting new teeth." "Perhaps she's not feeling well." "Maybe the new wheelchair is using up too much of her strength." "I don't understand why she ...

There are times that we look around us and cannot fathom the reality that stares us in the face.  We cling to one another, each bringing something different to the table.  Our family is becoming more closely knit each and every day...how can we not? Then we look outside of ourselves.  Imagine being in a dark, cold, secluded hole for months.  The air is stale, the ground is clammy, and your muscles ache from being cramped for what seems like an eternity.  Through the grace and compassion of others you are slowly lifted from the depths of your encasement.  The light is blinding and you raise your stiff arm to cover your shut eyes, allowing them a chance to push themselves open.  The air feels warmer and your bones relax as your muscles begin to soften and extend themselves.  There is a relief.  There are warm, loving hands holding yours.  Voices soothe your ears that have been void of sound.  You feel wrapped in protective arms, ...