It might seem like sometimes in life there are things we fight for and it just doesn’t work out, prayers that are said that seem to go unanswered…the whys might be asked and we may not find an answer. It is in those times when we need to look deep and find the win, see the answered prayer…it is there it just may not be exactly what we thought or wanted.
It is hard sometimes to remain positive, to look on the bright side when it seems there is not one; there is always, always, always something to be thankful for. Bert and I talked a lot about this topic of staying positive…I was afraid to write my thoughts as I am not the one physically living with ALS. We spoke about focusing on the good, going for the win, and remaining steadfast with our faith and hope. Bert’s philosophy is there is not a single productive thing that comes out of wallowing in self-pity. To him, attitude is everything, and the more positive his attitude the better the outcome of things will be. Bert is a problem solver, a planner…he remains upbeat and hopeful while keeping the side of acceptance and planning ahead for what may be. Teamwork, that’s our motto, at least one of use remaining calm (for the most part) and communicating our feelings…allowing Sophia and Alex to communicate their feelings. Teamwork helps there be an aspect of some control so at least controlled chaos remains in place.
A few weeks ago Bert told me about a story he saw on the internet, a husband petitioning for his wife to be allowed to take a cancer medication that was not FDA approved. He was campaigning for compassionate use to one of several new and promising antibody drugs. He campaigned on social media; there was a Change.org petition, a blog, Twitter and Facebook page. I followed the fight, I signed the petition, and I felt a connection, praying that they would win their fight and she would get the drug and be ok…hoping that they could live happily ever after. Last week I got an email with an update, the young woman was now on hospice, and the fight her husband said was put to the side so he could spend time with her. I felt a twinge of defeat, oh no…it was not going to be a happily ever after. I felt sad, but then I thought about it…it wasn’t all for nothing, it wasn’t failure; really their fight was a success. It brought many people together, got us thinking, he told their love story, it gave hope, and even now the young lady showed her strength with a smile and an upbeat attitude. I said a prayer, I prayed that God would guide her peacefully to him when the time was right and comfort her husband and family in knowing what an impact they had made. It didn’t turn out how they or we wanted but they will get their happily ever after now in each moment and in heaven when its time. I come across so many inspiring stories of families and their fight against ALS, they inspire me and my family to push on, to make the most of life, and they should know what an impact they have on this world…for the better. ALS takes, that is a fact, but still there is a win, we just need to look deep sometimes to find it…it may be different for everyone but it is there.
This life is a journey, a gift, we get to live it and decide how to get the most out of it, and we get to choose how we approach obstacles. ALS is a big obstacle with an unknown path, but we still have a choice…the choice is what we will do on that path, that is an individual and family choice. As for my husband and our journey with ALS we have decided that our journey will not be all for nothing, we will love, learn, and live life to its fullest in our own way. We know that we will have our happily ever after because, every moment of your life is a constant invitation to live happily ever after ~Robert Holden.
xoxo Jennifer
It is hard sometimes to remain positive, to look on the bright side when it seems there is not one; there is always, always, always something to be thankful for. Bert and I talked a lot about this topic of staying positive…I was afraid to write my thoughts as I am not the one physically living with ALS. We spoke about focusing on the good, going for the win, and remaining steadfast with our faith and hope. Bert’s philosophy is there is not a single productive thing that comes out of wallowing in self-pity. To him, attitude is everything, and the more positive his attitude the better the outcome of things will be. Bert is a problem solver, a planner…he remains upbeat and hopeful while keeping the side of acceptance and planning ahead for what may be. Teamwork, that’s our motto, at least one of use remaining calm (for the most part) and communicating our feelings…allowing Sophia and Alex to communicate their feelings. Teamwork helps there be an aspect of some control so at least controlled chaos remains in place.
A few weeks ago Bert told me about a story he saw on the internet, a husband petitioning for his wife to be allowed to take a cancer medication that was not FDA approved. He was campaigning for compassionate use to one of several new and promising antibody drugs. He campaigned on social media; there was a Change.org petition, a blog, Twitter and Facebook page. I followed the fight, I signed the petition, and I felt a connection, praying that they would win their fight and she would get the drug and be ok…hoping that they could live happily ever after. Last week I got an email with an update, the young woman was now on hospice, and the fight her husband said was put to the side so he could spend time with her. I felt a twinge of defeat, oh no…it was not going to be a happily ever after. I felt sad, but then I thought about it…it wasn’t all for nothing, it wasn’t failure; really their fight was a success. It brought many people together, got us thinking, he told their love story, it gave hope, and even now the young lady showed her strength with a smile and an upbeat attitude. I said a prayer, I prayed that God would guide her peacefully to him when the time was right and comfort her husband and family in knowing what an impact they had made. It didn’t turn out how they or we wanted but they will get their happily ever after now in each moment and in heaven when its time. I come across so many inspiring stories of families and their fight against ALS, they inspire me and my family to push on, to make the most of life, and they should know what an impact they have on this world…for the better. ALS takes, that is a fact, but still there is a win, we just need to look deep sometimes to find it…it may be different for everyone but it is there.
This life is a journey, a gift, we get to live it and decide how to get the most out of it, and we get to choose how we approach obstacles. ALS is a big obstacle with an unknown path, but we still have a choice…the choice is what we will do on that path, that is an individual and family choice. As for my husband and our journey with ALS we have decided that our journey will not be all for nothing, we will love, learn, and live life to its fullest in our own way. We know that we will have our happily ever after because, every moment of your life is a constant invitation to live happily ever after ~Robert Holden.
xoxo Jennifer
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