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 we make it from one morning to the next. We often seek strength from a myriad of sources; enough strength to combat the spiritual, emotional and physical ransacking this disease inflicts upon us and our family. It's not one day at a time...it's not one hour, it's one moment at a time.
As easy it can be to look at the utter heartache this disease brings with it we have also sought the miracles of abundance that have followed in its wake...for the graces of love, companionship, and comfort we are forever thankful...
We are thankful for God, watching over us every minute of every day. With each passing moment, we grow closer to the understanding that He is the orchestrator of our lives; He is in control.
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 we make it from one morning to the next. We often seek strength from a myriad of sources; enough strength to combat the spiritual, emotional and physical ransacking this disease inflicts upon us and our family. It's not one day at a time...it's not one hour, it's one moment at a time.
As easy it can be to look at the utter heartache this disease brings with it we have also sought the miracles of abundance that have followed in its wake...for the graces of love, companionship, and comfort we are forever thankful...
We are thankful for God, watching over us every minute of every day. With each passing moment, we grow closer to the understanding that He is the orchestrator of our lives; He is in control.
We are thankful for each other. Through the journey that we find ourselves we can always look to one another and truly know, understand, and feel what the other is going through. Without each other, we are lost in a world of confusion and turmoil.
We are thankful for Ava and Henry. They have shown, at their tender ages, that they are capable of providing comfort, compassion, and guidance to Ella. Not only do they look out for her in the most adorable ways, they still treat her simply as a "little sister"-teasing, fighting and everything that goes along with sibling rivalry--in this they bring a sense of normalcy to our house. They take our breath away each and every day in all they do with what they are given.
We are thankful for our families as they have stood strong with us; shouldered our cries for us; given their time to us; and poured out their love in so many ways...we rely on them so very much.
We are thankful for our families as they have stood strong with us; shouldered our cries for us; given their time to us; and poured out their love in so many ways...we rely on them so very much.
We are thankful for the strength that Ella has, despite her horrible disease.
We are thankful for Ella's adoring personality, tenderly touching everyone she meets with her love.
We are thankful for Ella's amazing team of doctors, nurses and therapists. Each time we are with them they provide us with the experience of never being rushed, always finding out exactly what we need, explaining things in ways that we can understand, and leaving us feeling well taken care of at the end of it all.
We are thankful for the researchers who are working so hard to find treatments and a cure for SMA.
Most of all, among everything else, we are thankful for you. Each and every one of you who reads Ella's story and sends your thoughts and prayers her way. There was one time that we, along with Ella, felt alone...it was when we realized, after her EMG, that she had SMA. We sat in the car, the three of us, as the world around us went forward---we went nowhere. We were alone, we were scared, and we were without hope. You have changed that. The love, compassion, generosity, thoughts and prayers have held us up, given us hope, and kept the loneliness at bay.
Happy Thanksgiving
Happy Thanksgiving
Love,
Michael & Lindsay
