I am tired but yet full of motivation. I am sad and grieving but yet filled with happiness. I am scared but feel so brave. I feel weak but know that I am stronger than I have ever been. I hate so much that my husband is suffering from ALS but I feel the most love for life and my family that I could ever feel. My emotions are raw and life is crystal clear. This disease is so horrific and not fair but yet at the same time it breaks people wide open to live life to it's very edges.
Summer is in it's final stretch; crazy how time moves, seems like faster and faster every year. Bert has lost a lot since last summer. We said goodbye to walking more than a few feet and adapted to a full time wheelchair. Gone are the days of grilling dinner, getting a bedtime snack, or just standing in front of the fridge; he now patiently waits for someone to make him something to eat, cut it into small pieces and usually feed it to him. We said goodbye to steps, now he rides the magic stair lift to the second floor. No more showering when he wants, he must wait for that too. He waits for me to cut his nails, clean his ears, wash his hair, dry him and dress him. He even needs to work around someone else's schedule to poop, some might say too much information, but it's reality. Think about it, all the things you do every day...anything you want, when you want, he now has to wait for someone to do for him or help him with. Bert uses the word frustration to describe it, I feel down right pissed at times for him. Think about how often you use your phone, to text, to call your spouse and let them know your running late, or to place an order for a pizza, that's gone for Bert. I make the phone calls, I answer his phone, text for him, write, type, the kids and I are his hands and arms now. He is a good sport though, even with the discomfort, pain and cramping of not being able to control his body anymore, even though when he has an itch he has to wait for someone to scratch it. Despite all of it we are usually laughing. He still makes me laugh, that is what I have always loved about him anyway so take that ALS! We still have fun. We still are happy.
We took a couple vacations this summer, we adapted, not without struggle but in a weird way that makes everything so much more special. Nothing is easy. Nothing goes without planning. In the moment after he made it to the ocean's edge in that beach wheelchair or survived a roller coaster ride with our kids it's an amazing rush of happiness to live that experience and make that memory with family. Accomplishment! Strength! Hope! ALS seems so small for that moment and we feel like we just reached the summit of Everest. We have not stopped planning either, we are checking off the bucket list one by one. We are not thinking of the what if's, we are just pushing ahead and whatever happens, well we have no control. It feels good to let go of trying to control life. True freedom.
The ALS Ice Bucket Challenge is the perfect end to these warm summer months. A cleansing, a baptism of hope and belief that this disease will end. The ALS warriors are fiercer than ever, inspiring, and the hope for a cure is overflowing the buckets! I am in awe of their strength, I am positive we are winning this fight. My husband is one of those warriors, he inspires me daily, he gets up everyday and lives for me, for Sophia, and Alex. Every morning when I sit him up at the edge of the bed he lays his head on me, it's a morning hug without arms. I bet you never knew you didn't need arms to hug. ALS continues to relentlessly take, but the human spirit is unstoppable. Bert still chooses to ride this roller coaster of life with me everyday so I will put my arms up for both of us and enjoy the ride.
xoxo~Jennifer #alwaysapositive
Summer is in it's final stretch; crazy how time moves, seems like faster and faster every year. Bert has lost a lot since last summer. We said goodbye to walking more than a few feet and adapted to a full time wheelchair. Gone are the days of grilling dinner, getting a bedtime snack, or just standing in front of the fridge; he now patiently waits for someone to make him something to eat, cut it into small pieces and usually feed it to him. We said goodbye to steps, now he rides the magic stair lift to the second floor. No more showering when he wants, he must wait for that too. He waits for me to cut his nails, clean his ears, wash his hair, dry him and dress him. He even needs to work around someone else's schedule to poop, some might say too much information, but it's reality. Think about it, all the things you do every day...anything you want, when you want, he now has to wait for someone to do for him or help him with. Bert uses the word frustration to describe it, I feel down right pissed at times for him. Think about how often you use your phone, to text, to call your spouse and let them know your running late, or to place an order for a pizza, that's gone for Bert. I make the phone calls, I answer his phone, text for him, write, type, the kids and I are his hands and arms now. He is a good sport though, even with the discomfort, pain and cramping of not being able to control his body anymore, even though when he has an itch he has to wait for someone to scratch it. Despite all of it we are usually laughing. He still makes me laugh, that is what I have always loved about him anyway so take that ALS! We still have fun. We still are happy.
We took a couple vacations this summer, we adapted, not without struggle but in a weird way that makes everything so much more special. Nothing is easy. Nothing goes without planning. In the moment after he made it to the ocean's edge in that beach wheelchair or survived a roller coaster ride with our kids it's an amazing rush of happiness to live that experience and make that memory with family. Accomplishment! Strength! Hope! ALS seems so small for that moment and we feel like we just reached the summit of Everest. We have not stopped planning either, we are checking off the bucket list one by one. We are not thinking of the what if's, we are just pushing ahead and whatever happens, well we have no control. It feels good to let go of trying to control life. True freedom.
The ALS Ice Bucket Challenge is the perfect end to these warm summer months. A cleansing, a baptism of hope and belief that this disease will end. The ALS warriors are fiercer than ever, inspiring, and the hope for a cure is overflowing the buckets! I am in awe of their strength, I am positive we are winning this fight. My husband is one of those warriors, he inspires me daily, he gets up everyday and lives for me, for Sophia, and Alex. Every morning when I sit him up at the edge of the bed he lays his head on me, it's a morning hug without arms. I bet you never knew you didn't need arms to hug. ALS continues to relentlessly take, but the human spirit is unstoppable. Bert still chooses to ride this roller coaster of life with me everyday so I will put my arms up for both of us and enjoy the ride.
xoxo~Jennifer #alwaysapositive
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