Everywhere I turn, I'm reminded that the Christmas season is upon us. But this year, it's different. I'm not having much Christmas cheer. Ask anyone who knows me pretty well and they'll tell you that my favorite time of year is between Thanksgiving and New Year's. It's just always such a magical time for me. Well, it used to be. This year, I didn't really want to get our Christmas tree. I didn't want to put up the decorations. To me, it was all just another thing to have to do. A chore. I was hoping that as the time drew nearer, my feelings would change. But they didn't. I see and hear people talking about their Christmas shopping. I haven't started. I not only haven't started, I haven't even BEGUN to think about it. I still feel like it's early fall, not December. I kind of wish I could skip Christmas this year. Not the "true meaning" part, just the materialistic part. I don't want to buy gifts. I don't ...

We knew this would happen. It was only just a matter of time. The first time is the hardest. We survived. The Stomach Flu. 4:00 pm on a Sunday afternoon Henry launches his lunch and more on our couch. He spends the next six hours continuing in the same fashion. It's his first time being sick with the dreaded stomach flu and he lets us know in no uncertain terms that he is not a happy camper. By 10:30 he has fallen asleep and wakes up every hour or so begging for water. We know that water will only make him sick again so we wait as long as possible before we give some (a very little, mind you)...he holds it down. Lindsay does 10 loads of laundry between couch covers and cushions, clothes, blankets, pillow cases, and towels (and pretty much anything else that would fit in the washing machine). Ava and Ella have escaped the fates that the stomach flu hold. Until... Tuesday night at 10:30, Ava launches her version of the stomach flu on her bed (in a ...

I've sat down to write a blog several times in the past few days.  Like everything else in my life, it too, has become more difficult. It’s like I am running in slow motion while everyone and everything around me is going at high speeds.  Each time I think that I feel ok I get blind-sided by  the awfulness of SMA.  It’s hard to describe but it’s like a wave flooding my mind, weighing it down and drowning out every other aspect of life.  The life I lead and must face in the future seems blurry, water-logged, and out of focus.  Nothing seems real anymore. When we first learned of Ella’s disease, we made a promise to one another, Lindsay and I did.  A promise to do everything we can to keep her alive until they find treatments and/or a cure.  Each day that passes seems to grow longer and the tasks more difficult.  Not only does the progression of SMA affect the physical well being of those who have it, the progression wears away at the ...

I used to think it was hard to be a mom. Let me rephrase that. I used to think it was hard to be a mom of three kids. Let me rephrase that again. I used to think it was hard to be a mom of three kids under age 5. I need another crack at this. I used to think it was hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a progressive neuromuscular disease. Nope, still not quite right. I used to think it was hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a terminal progressive neuromuscular disease, with no treatment or cure. Ok, this is it, I promise… It is so incredibly hard to be a mom of three kids under age 5, with the one-and-a-half-year-old having a terminal progressive neuromuscular disease, with no treatment or cure, and a broken arm. There that's it. What I just mentioned above is so far beyond what I ever imagined "hard" to be. And I wonder, will it EVER get easier? Judging by the pattern so far,...

The time of year has come when we sit in contemplation of all that surrounds us. The whirlwind of activity that has led to this day of Thanksgiving is by no means light. Our lives changed in the most unimaginable ways. Over the past 5 years of our marriage we have built a family of five, cut our income in half by having Lindsay stay at home with the kids, lost a grandparent, a niece, a parent, a sister and two childhood friends, stood by a sibling with cancer, had two c-sections and one VBAC2, found a church that we love after years of searching, made new friends, started a business, travelled a bit, have called 911 three separate times, thrown a number of parties at our house, been a part of a sibling's wedding, baptized three children, and found comfort in one another. We have also learned that our youngest child, Ella Sabine Casten, has a terminal disease. A disease that we had never heard of. A disease they call Spinal Muscular Atrophy (SMA) Type 2. We often wonder how...

This morning I called the pediatrician's office to set up Ella's appointment with the Orthopedist. I spoke with our favorite nurse, Maggie (who rocks!), and she got Ella in to see the ortho this morning! The doctors at the ER figured we wouldn't be able to get in until next week, because of the holiday. When I took Ella to the appointment, she was a rockstar :) She was being her normal outgoing self, saying "hi" to everyone she saw, in that sweet little voice that we all love (to people in the elevator, the receptionists, the nurses, the doctor, etc.). When the Orthopedist saw her x-rays, he immediately confirmed the two fractures in her arm, the "buckle fractures." He said that with her being so young, her bones will heal very quickly and she will only need to wear her new cast for 3 weeks (as opposed to 6)! We've never had a cast in the family before, so I wasn't sure how she would react to the technicians putting it on her. While I di...

Last night we faced one of the most terrifying moments of our lives. Ava and Henry had gone down the basement to play and forgot to shut the door. Ella was in her wheelchair on the main floor with us. We had our eyes off of her for a brief moment and then we heard the thud-bump-thud-thud-thud . We knew exactly what had happened. She went down the stairs in her wheelchair. She's ok. We called 911 and she was taken to the ER. All of her neurological signs were completely normal. She wasn't sucking her fingers and "charging" to comfort herself, which we thought was a little abnormal. The doctors noticed that she seemed to have some discomfort in her right arm. Sure enough, she fractured the two bones in her forearm, just above her wrist. It's called a "buckle fracture", which is quite common among young children and pretty minor as far as breaks go… she won't need the bones to be set or have surgery, but she will need to be in a cast for 6 w...