I walked into my sister-in-law's pre-wedding gathering with Henry & Ella in tow.  Lindsay and Ava were part of the wedding party and were already there.  The planning done by so many, the preparations all set for the day, and the gathering of family and friends would soon begin...with it bringing many people together after long stretches of time. Weddings offer much to those who are there.  For the newlyweds it's about publicly honoring their love; proclaiming, in the presence of those closest to them, how they feel about each other...carrying on the love and adoration so delicately placed in them by their parents.  For the guests it's about witnessing that promise; bringing joy and celebration to the couple.  Handshakes, that seem to last forever as exchanges of laughter and good tidings are expressed between people who may not have seen each other in a long time, fill the reception hall. Weddings offer the chance to connect and reconn...

She looks to us and we look to others... I sat with a friend today. I sat with two. Then it turned to three. Our conversation started with silence.  My friend and I looked at each other, allowing our eyes to speak for us.  We have always had something to say to each other in the past; over the years many good times and not-so-good times have crossed our respective paths.  We've always talked, always laughed, always been there for each other.  It was the same today but in the atmosphere of silence.   When the silence was broken we sought & found each word spoken the best we could to connect our thoughts, our ideas, and our beliefs.  That's what friends are for. Time passed and I sat with another friend.  She is my best friend and I love her dearly.  We talked about how Ella has been working really hard with her new physical therapy.  We were filled with pride and joy for our little girl.  We know that her exercises, f...

Picture a beautiful summer evening, we're sitting out on the deck enjoying each other's company after a delicious meal prepared by Lindsay.  I've been gone all day at work so we are catching up on our daily doings. We have a round outdoor table that we sit at while on our deck.  Henry sits next to me (on my right) and across from Lindsay.  Ava sits next to Henry and Lindsay while Ella sits in-between Lindsay and me in her highchair.  A cozy arrangement that we like very much. Ella finished her dinner and was beckoning to go into the baby pool that was filled with small plastic balls, maybe 100 of them, instead of water...a homemade ball pit, if you will.  We obliged and she sat amongst the colorful balls making her happy sounds. I was finishing the green beans (straight out of the pot they were cooked in--yes--everyone else was finished with them!) and Lindsay was sitting peacefully talking with Ava. From behind Henry flew a bee.  Both Lindsay and I cau...

Yesterday was good. And yesterday was bad. In the morning while Ava was at preschool, Henry and I took Ella to get casts made of her legs so she can get Ankle Foot Orthoses (AFOs). Ella had a great time! She really liked Mr. Scott, who did the casts. We got to pick a fun pattern for the plastic, as well as colors for the velcro straps and foam pads inside the AFOs. She also had her legs measured for her knee immobilizers. It was a very positive experience. In his many years of working in the field, Scott has fitted children with SMA for orthotics before, but only about a half-dozen. He was eager for me to tell him more about the disease. I explained to him pretty much all I've learned in this short time, which was quite a lot. I described Ella's symptoms, tests she's had done, the progression of the disease, etc. He asked some questions as I explained, to be sure he understood as much as he could. It was obvious to me that he has a lot of compassion for ...

The ups and downs experienced when a terminal disease diagnosis has been handed to your child is more than a roller-coaster.  It is ride of unimaginable highs and lows. Hearing of a child with SMA Type 1 who seems to be making progress elicited a tremendous high for us.   We received no specifics beyond that.  We do know that doctors are making excellent progress in terms of helping people with neuromuscular diseases. We spoke with our pediatrician today as well as continuing our own research.  Currently there are no treatments or cures for SMA...it remains classified as a terminal disease...however, there are therapies.  There are drugs that minimize pain.  There are procedures~such as surgery for scoliosis and other problems associated with SMA, there are acupuncture sessions, there are even stem cell research facilities in China. The "high" we experienced was not lost from our conversation with our doctor.  In fact, it was a glimmer of ho...

Today is the most encouraged and positive that I've felt since that dreadful day of Ella's EMG in July, when our worst fears were confirmed that she indeed had a serious problem. Over the weekend, we sent an email to Families of SMA , requesting a packet of information (as suggested by Dr. Silver, her neurologist who performed the EMG). Today we received the packet - a wealth of information on SMA, resources, and support groups. It will take quite a few days to get through all of it! But not only did FSMA send us information packets, but a care package for Ella as well! And not just a little box with a few toys, but a HUGE box filled to the brim with things that Ella can enjoy, recommended by other families who have children with SMA Type 2! Some of the things included are a baby/toddler swing for the backyard, a Bumbo chair, a beautiful hand-made quilt (made by a grandmother of a little girl with SMA), a water play mat, a Magna-Doodle, a sheepskin blanket (designed to be...

Ella, Henry, and Ava~Summer of 2011 Lindsay and I will never forget this summer. When we look back we will most likely feel a sense of awe. A sense of awe because we experienced incredible support, love, fellowship, and sincerity from so many people. I go back to work on Tuesday. This will be my 11th year teaching 4th grade at Lincoln. It will be my 17th year working directly with kids and their families. Family... It's always hard going back to teaching after the summer. The days spent with my wife and kids becomes such a part of me...each year when I return I feel as if I am missing out on things. Lindsay will have to once again take the reins and care for Ava, Henry, & Ella on her own during the work-week. This time, however, it will be different for her. More challenging to say the least. Ella is going to require much time and attention. Ava and Henry too, will require more from Lindsay. Our time together is more precious, now more than ever. As ...

Ella Sabine Casten (14 months old) Ella has Spinal Muscular Atrophy (SMA) Type 2. The diagnosis was confirmed on August 12, 2011. Her motor neurons are dying and will continue to die. For Ella, her SMN1 gene (located on chromosome #5) is not producing a protein called Survival of Motor Neuron (SMN).  This protein is responsible for keeping the motor neurons alive.  She produces some (through copies of the SMN1 gene that mother nature has so brilliantly provided), but her copies are not sufficient to do the job as well as the original would have.  Her physical growth and the demands placed upon her muscles will far outweigh what she can produce. As increased nerve denervation (loss of nerve supply) occurs, she will grow weaker over time and her muscles will atrophy from non-use.  This rare genetic disease is in the same family of diseases as ALS (Lou Gehrig's Disease); only it is not as aggressive. Currently her legs and trunk are the most severely affected....