Today ends the month of May for the year 2017, another May of ALS awareness has come and gone. Since the Ice Bucket Challenge, it feels like ALS awareness hit its peak and is now falling back into the shadows. How I wish we could find a cure and celebrate the month of May for the end of ALS. Those people living and ultimately dying from this disease and their families are all too aware of ALS every month, every day of every month, and every hour of every day. They never get a break, awareness hangs in the air like a permanent heavy fog so dense that sometimes it’s hard to breathe. If I have learned anything in the last four plus years since ALS arrived it’s that nothing gets easier. My faith is tested, my hope is tested, my love is tested and at times I wonder if I will be able to come out of this with any of the three.
ALS causes so much suffering. My beloved is suffering, he is tired, he is in pain, he is frustrated and at times he wants ALS to be over for him. My children are suffering. They suffer much of the time in silence, in their rooms, sometimes with each other, wishing life could go back to normal. They hold tight to what is left. They try their best to pretend they are ok, they don’t cry, they put up a brave front. But they feel the stress, the fog weighs on them too and it’s hard sometimes for them to see.
Hospice is good. Their presence helps to cut through the fog. They bring comfort to Bert both physically and emotionally. They are a presence that we can count on, kind staff who are genuine and caring. A constant in the ever-progressing world of ALS. We are happy with our choice to have allowed them to come into our lives at this point in our journey. A positive.
I take walks with Sophia while we wait for Alex to get done practicing his sports. Walks provide fresh air, and time to talk and vent and laugh. Yesterday, on a rainy, chilly, supposed to be spring day we walked and Sophia read me text messages from her dad. Text messages from the last three years…so many text messages. I listened and laughed and cried; there on her phone she had her relationship with her dad in print. So many conversations between them, inside jokes and important pieces of advice, caregiving for each other captured in short messages. Funny stories, and support, notes of his feelings for me and feelings for her, and everyday chatter. Dating advice, and how tos on different topics. Movies and music, school work and friends…all on that iphone. Amidst all the chaos of ALS I had not realized how many conversations they have even though they are not spoken. I made her stop at one point and make sure she had them all saved. I know she will need them throughout her life. Thank goodness for technology.
Later I asked to see Alex’s phone…he had so many messages too. Sports advice and quite a few lectures along with caregiving and some parenting to get off xbox lol. I made him save his also explaining that even though now he may think he knows everything and doesn’t need advice, he will appreciate it later. He rolled his eyes but he knows I know best😊. Grateful…always.
So, as I feel much of the time recently that nothing seems to be going right and life just is not turning out as planned, there are still little surprises that pop up to make me smile. Bert even in the hardest of times still finds a way to make me laugh. And even through the stress of ALS and difficulty and exhaustion of caregiving we still love each other, and we still made these beautiful kids who are each one of a kind. They will do amazing things. As for faith…I believe in God, I don’t think he gave anyone ALS. I think things in life just happen and your faith helps guide you to get through life’s challenges. Faith can be tested, but faith is just that, a test of believing in what you cannot know. We Believe. Hope, well…that one is hard to hang onto as this disease progresses in my husband. There may not be a cure to hope for in his lifetime. When the hope of one wish is lost the hope for another surfaces. Hope is a wish, a desire for things to work out. They probably won’t work out how we want them to, but I think ultimately things will be ok. Ok is all I can hope for some days. Ok is what I will have to accept. And love, well that’s the one thing that nothing can get in the way of. Love can be tested, but if it’s true it will always prevail. Love cannot be over shadowed by disease, it cannot be hidden by the fog, it cannot be altered in any way. Love will conquer every disease, every disaster, love will only grow stronger in the face of adversity. Love is felt, it’s part of us, it weaves marriages, and families together, parents to children and spouses to each other. Even death cannot touch love. I guess I just snuffed out my own doubt. I will emerge from this journey with all three. Faith that things will be ok and life is good. Hope, that my wish will come true and we will all be together free of ALS someday. And Love, I feel love every day. Love for my husband even when things are hard, love for my children unconditionally and no matter what, love for family and friends, and love for myself that I am doing the best I can and that my best is ok.
Goodbye May 2017 we are aware of ALS, we spread the word, educate and advocate. But now it’s time for another season. So, here’s to a summer of faith, hope and love.
xoxo Jennifer
ALS causes so much suffering. My beloved is suffering, he is tired, he is in pain, he is frustrated and at times he wants ALS to be over for him. My children are suffering. They suffer much of the time in silence, in their rooms, sometimes with each other, wishing life could go back to normal. They hold tight to what is left. They try their best to pretend they are ok, they don’t cry, they put up a brave front. But they feel the stress, the fog weighs on them too and it’s hard sometimes for them to see.
Hospice is good. Their presence helps to cut through the fog. They bring comfort to Bert both physically and emotionally. They are a presence that we can count on, kind staff who are genuine and caring. A constant in the ever-progressing world of ALS. We are happy with our choice to have allowed them to come into our lives at this point in our journey. A positive.
I take walks with Sophia while we wait for Alex to get done practicing his sports. Walks provide fresh air, and time to talk and vent and laugh. Yesterday, on a rainy, chilly, supposed to be spring day we walked and Sophia read me text messages from her dad. Text messages from the last three years…so many text messages. I listened and laughed and cried; there on her phone she had her relationship with her dad in print. So many conversations between them, inside jokes and important pieces of advice, caregiving for each other captured in short messages. Funny stories, and support, notes of his feelings for me and feelings for her, and everyday chatter. Dating advice, and how tos on different topics. Movies and music, school work and friends…all on that iphone. Amidst all the chaos of ALS I had not realized how many conversations they have even though they are not spoken. I made her stop at one point and make sure she had them all saved. I know she will need them throughout her life. Thank goodness for technology.
Later I asked to see Alex’s phone…he had so many messages too. Sports advice and quite a few lectures along with caregiving and some parenting to get off xbox lol. I made him save his also explaining that even though now he may think he knows everything and doesn’t need advice, he will appreciate it later. He rolled his eyes but he knows I know best😊. Grateful…always.
So, as I feel much of the time recently that nothing seems to be going right and life just is not turning out as planned, there are still little surprises that pop up to make me smile. Bert even in the hardest of times still finds a way to make me laugh. And even through the stress of ALS and difficulty and exhaustion of caregiving we still love each other, and we still made these beautiful kids who are each one of a kind. They will do amazing things. As for faith…I believe in God, I don’t think he gave anyone ALS. I think things in life just happen and your faith helps guide you to get through life’s challenges. Faith can be tested, but faith is just that, a test of believing in what you cannot know. We Believe. Hope, well…that one is hard to hang onto as this disease progresses in my husband. There may not be a cure to hope for in his lifetime. When the hope of one wish is lost the hope for another surfaces. Hope is a wish, a desire for things to work out. They probably won’t work out how we want them to, but I think ultimately things will be ok. Ok is all I can hope for some days. Ok is what I will have to accept. And love, well that’s the one thing that nothing can get in the way of. Love can be tested, but if it’s true it will always prevail. Love cannot be over shadowed by disease, it cannot be hidden by the fog, it cannot be altered in any way. Love will conquer every disease, every disaster, love will only grow stronger in the face of adversity. Love is felt, it’s part of us, it weaves marriages, and families together, parents to children and spouses to each other. Even death cannot touch love. I guess I just snuffed out my own doubt. I will emerge from this journey with all three. Faith that things will be ok and life is good. Hope, that my wish will come true and we will all be together free of ALS someday. And Love, I feel love every day. Love for my husband even when things are hard, love for my children unconditionally and no matter what, love for family and friends, and love for myself that I am doing the best I can and that my best is ok.
Goodbye May 2017 we are aware of ALS, we spread the word, educate and advocate. But now it’s time for another season. So, here’s to a summer of faith, hope and love.
xoxo Jennifer
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