February is coming to a close. The shortest month of the year yet it feels like it dragged out forever.
Starting with the frigid weather that kept everyone indoors. As the month wore on so did the bothering between the three kids. Much crying, whining, teasing, and screaming filled the house, echoed off the walls, and sent Sasa with her tail between her legs more than I've ever seen before.
We closed Mama Bracelets and had to work through the task of tying off all the loose ends...some still exist. At first we thought closing the business would be an easy thing to do emotionally speaking, but we found out different. We actually had a twinge of sadness with the closing of Mama Bracelets & ellaWEAR Jewelry. Mind you, we are not thinking twice about this decision, just didn't expect the emotional piece to hover about.
We put our current house on the market. Needless to say, leading up to the time it went on we did all the necessary "touch-ups" in-between work, kids, therapies, classes, meals, and daily household chores. The house is immaculate...and with three kids who are basically stir-crazy right now, it has been quite the challenge keeping the house in showing condition; we do have our system and we work well within it.
The month of February brought a second job into the Casten household. While Mama Bracelets did bring in some extra money, much of it went to SMA research efforts or directly to Ella's fund...very little was allotted to the Casten Monthly Budget. Besides, it wasn't steady income. Once Mama Bracelets was dissolved, we felt that a steady second income was needed...the ends just weren't meeting and the gap between them was growing larger over time. After some lengthy discussions about whom should take what kind of job we felt it best if I take on tutoring. With that being said I created a website and Facebook page, got the word out about my services and within a week I had three clients (four now!). Of course this means longer working hours for me and longer working hours at home for Lindsay. Our "together" time is now more precious than ever...dwindling as it may.
We've been house hunting. This time it's different. The parameters in which we must operate within while seeking a house is beyond what we've done before while house hunting. Not only do we have to make sure it will accommodate our family of five (plus a dog & cat) with enough room for the kids to grow, we also have to make sure that the floor plan will be conducive for Ella to use her current wheelchair and any future chair she will have. Not to mention her current adaptive and medical equipment as well as future ones. And of course there are the home modifications that will need to be made; a stair-glide, permanent ramps into the house (be it through the front door or preferably through the garage), a modified bathroom, and eventually an elevator. Yes, our parameters are different and as we are finding...challenging to fulfill.
Then there's SMA. As I'm sure you've gathered from knowing us, winter is the most precarious season in terms of overall health for kids afflicted with SMA. A simple cold can turn into catastrophe. During the month of February many kids that we know from the SMA community fell desperately ill...some are still fighting as I write this. They're surrounded by family, friends, thoughts, and prayers. Several kids have passed away this month; a loss unimaginable. News such as this always runs through me with coldness and trepidation.
The night before this post was written, Ella visited the ER. I'm sure the staff at our local hospital are becoming all too familiar with our visits. SMA has many repercussions besides the muscle atrophy...among them is the fact that bone density is compromised from the lack of weight-bearing pressure. With this, kids with SMA are far more susceptible to fractures and breaks. During an assisted bathroom break Ella was placed in an assisted standing position as per usual. The one difference this time is that she was not wearing her AFO's (ankle-foot orthotics). Before we knew it her legs simply gave way, "crumpled" if you will. Gravity pulled her down quickly and her delicate ankles bore the brunt of her upper body weight. Needless to say she cried in pain. Her tears, genuine and heartbreaking, led us to take her to the ER to check to see the extent of any damage. Fortunately there was no fractures, no breaks. It was good to see her resting in her own bed that night.
As Lindsay had Ella at the ER and the other two were in bed, I felt an nagging lump in my throat, a sort of numbing sensation filled my stomach, and my thoughts raced in several directions. Unnerving. Uncomfortable. Unreal.
The shortest month with the longest life is coming to a close. We have much to do in the coming months. We have much to do.
