The first morning of 2014 greeted us with a steady snowfall coupled with chilling temperatures. The flakes are small and light; they whirl in a seemingly aimless descent...each one finding its final resting place among its peers.
2014 is here. 2013 has lumbered out of time and 2014 swirls its way into our lives. The promises it holds gives way to optimism, hopes of a brighter future, and uncertainty; simply falling in line with what time really does offer us as we traverse through it.
Several months ago we made the decision to seek out and purchase a house that would be more conducive to handicap accessible modifications than our current house might be. With this in mind we shifted our family business to encompass a wider variety of products thereby making it possible to invite people to hold "ellaWEAR Jewelry" parties to help raise funds for "Ella's House Fund". We started a Facebook Page, "Caring for The Castens" as well as an online fundraising page. We received online donations, personal donations, and support in many ways thus far. Through it all we have raised just over 23% of our goal. This is really incredible considering it has only been a good three months!
2013 brought many new advancements to the battle against SMA. New clinical trials were started and others were approved. The excitement within the SMA Community of Families, coupled with the anticipation of successful outcomes of these approaches, permeates cyberspace.
In the same breath, we also look back at the many people who lost their life to SMA. The helpless feeling that washes over a person when the news of another child lost to SMA strikes deeply into the hope we carry with us. Nevertheless, we gather ourselves, lean on one another, and look at what we do have right now, seeking the healing powers of hope; seeking the miracle we so fervently cling to unconditionally. May those who have passed fly free in the glory that surrounds them and may their families and friends find comfort and peace in the coming years.
Ella has, to our surprise, made some tremendous gains. She works extremely hard in her therapies and has a unwavering desire to overcome the harsh obstacles SMA throws at her. Her pride shines through as she defies the power of gravity that often overtakes her fragile body. She has been sitting on the floor more often, not only holding herself up but twisting and turning, leaning on her arms, and scooting around. She will often find an object that has some weight to it (a book, a game box, etc) and will lift it, proudly announcing her feat. She has developed an increased interest in food...eating by mouth more than she previously had. Her coloring, writing, and "reading" has also been on the rise as she loves school.
Ava and Henry have also worked through much this past year. They are constantly challenged by SMA in a different way than Ella is challenged. They must navigate a house filled with equipment, deal with a younger sister who has command of a huge power wheelchair (and sometimes uses it to force her way!), make concessions for the attention they'd like to have in order for us to take care of Ella at any given moment. They are learning to help Ella in ways that most youngsters wouldn't have to do with their younger sibling. They, through all of this, still treat her as they would treat anyone else...they call names, tease, take toys, make fun, poke, prod, and bother. They also laugh together, play games with each other, and are developing lifelong relationships with one another. Ava is flourishing in 1st Grade and Henry has good reports from pre-school all of the time. They love their teachers, are making friends, and learning much.
Lindsay and I continue to walk the path of raising a family, working through the difficulties of SMA, while building a future for ourselves. We have developed routines, found outlets, and make time for one another. While the pressures are great, the worry is there, and the uncertainty seems daunting...we manage to live our lives. We rely on one another and we rely on our families, friends, acquaintances, and strangers...we are quite blessed.
As we all know, "life is what happens to you as you're planning for it"...with that being said we really do not know what 2014 holds for the Casten Family. What we do know, however, is that whatever comes our way we have the love and support of each other and of so many others.
2014 is here. 2013 has lumbered out of time and 2014 swirls its way into our lives. The promises it holds gives way to optimism, hopes of a brighter future, and uncertainty; simply falling in line with what time really does offer us as we traverse through it.
Several months ago we made the decision to seek out and purchase a house that would be more conducive to handicap accessible modifications than our current house might be. With this in mind we shifted our family business to encompass a wider variety of products thereby making it possible to invite people to hold "ellaWEAR Jewelry" parties to help raise funds for "Ella's House Fund". We started a Facebook Page, "Caring for The Castens" as well as an online fundraising page. We received online donations, personal donations, and support in many ways thus far. Through it all we have raised just over 23% of our goal. This is really incredible considering it has only been a good three months!
2013 brought many new advancements to the battle against SMA. New clinical trials were started and others were approved. The excitement within the SMA Community of Families, coupled with the anticipation of successful outcomes of these approaches, permeates cyberspace.
In the same breath, we also look back at the many people who lost their life to SMA. The helpless feeling that washes over a person when the news of another child lost to SMA strikes deeply into the hope we carry with us. Nevertheless, we gather ourselves, lean on one another, and look at what we do have right now, seeking the healing powers of hope; seeking the miracle we so fervently cling to unconditionally. May those who have passed fly free in the glory that surrounds them and may their families and friends find comfort and peace in the coming years.
Ella has, to our surprise, made some tremendous gains. She works extremely hard in her therapies and has a unwavering desire to overcome the harsh obstacles SMA throws at her. Her pride shines through as she defies the power of gravity that often overtakes her fragile body. She has been sitting on the floor more often, not only holding herself up but twisting and turning, leaning on her arms, and scooting around. She will often find an object that has some weight to it (a book, a game box, etc) and will lift it, proudly announcing her feat. She has developed an increased interest in food...eating by mouth more than she previously had. Her coloring, writing, and "reading" has also been on the rise as she loves school.
Ava and Henry have also worked through much this past year. They are constantly challenged by SMA in a different way than Ella is challenged. They must navigate a house filled with equipment, deal with a younger sister who has command of a huge power wheelchair (and sometimes uses it to force her way!), make concessions for the attention they'd like to have in order for us to take care of Ella at any given moment. They are learning to help Ella in ways that most youngsters wouldn't have to do with their younger sibling. They, through all of this, still treat her as they would treat anyone else...they call names, tease, take toys, make fun, poke, prod, and bother. They also laugh together, play games with each other, and are developing lifelong relationships with one another. Ava is flourishing in 1st Grade and Henry has good reports from pre-school all of the time. They love their teachers, are making friends, and learning much.
Lindsay and I continue to walk the path of raising a family, working through the difficulties of SMA, while building a future for ourselves. We have developed routines, found outlets, and make time for one another. While the pressures are great, the worry is there, and the uncertainty seems daunting...we manage to live our lives. We rely on one another and we rely on our families, friends, acquaintances, and strangers...we are quite blessed.
As we all know, "life is what happens to you as you're planning for it"...with that being said we really do not know what 2014 holds for the Casten Family. What we do know, however, is that whatever comes our way we have the love and support of each other and of so many others.
