I am about to complete my Spartan journey on Sunday, and I want to thank everyone for all your support and beautiful comments on my posts. I appreciate everyone who has followed our journey of ALS. But, I also want you to know this-
I am no super star or role model, nor am I going to be a Spartan sprint queen😊. I am just a flawed middle aged chick who happens to have a husband who had the bad luck of getting sick with one of the worst diseases ever, ALS. My husband getting sick has been by far the most difficult challenge in my life. It forced me to take on life in a way I would have never dreamt of. I love my husband with all my heart, but it’s not easy being a full-time caregiver for your spouse. We are like any normal couple with all the same struggles of marriage and raising two teens, we just have a horrible terminal illness to deal with as well. We still fight and get angry, we just can’t stay mad because Bert might have to poop and I have to get him on the toilet hold him there and wipe his butt. We argue over parenting, he is strict, and I am not so much. He wants me to do things a certain way with the house and the yard and I really don’t care about fertilizer. We have different views and philosophies, we like different shows and have different interests, but we are stuck together like glue. It’s hard.
We both become totally exhausted, Bert with living with ALS and fighting his failing body every minute, coping with grief and the loss of his body while still being alive. He gets frustrated and down and angry sometimes. I am exhausted with care-giving because sometimes I just don’t want to take care of someone else 24/7 and with that feeling comes heavy guilt. I am tired of worrying and thinking about illness all the time. I am tired of equipment in every room of the house. I dwell on the things that ALS has taken from Bert like his voice, ability to swallow, ride a bike, run and walk and wipe his own butt, I would be happy if he could still hold his head up. I long for what we should be doing and wish for silly things like sleeping in the same bed and sitting on the couch together, and touch…I touch him all day long turning and re-positioning him, and feeding, dressing, brushing teeth and all those activities of daily living but it’s not the same as touch, real hugs and holding hands when there was life in those muscles. I must tell myself to focus and look for a positive, force myself to find one, make myself look around and be grateful for something. It’s not easy some days, and then there is more guilt. There is grieving everyday and the real grieving hasn’t even begun yet. We constantly have to tell ourselves to live because it’s easy to sink into sadness.
I have to work hard at not feeling resentful and abandoned by people, reminding myself that life keeps going no matter what we might be going through. Support ends up showing up in places and with people I never suspected. I must remind myself to let go of feelings that don’t help me, I have to remind myself not to assume what anyone else is thinking or feeling. I tell myself daily that I will never reach perfection and that’s OK. Actually since I lose my shit most days, I have to tell myself and my kids that’s it’s OK to scream and cry and fight and drop the F-bomb as long as we can say sorry and forgive and say I love you out loud to each other every day. Perfection is never going to be a thing…Perfection is never going to be a thing! Not in real life, not ever, not in any person’s situation and it’s OK. We are human, and we are flawed, we make mistakes and it’s OK. That’s me most days trying to convince myself…and again guilt creeps in.
My point is this, everyone is struggling with their own journey in this life, and no one struggle is lesser than another. And everyone working through a struggle is inspiring, because it’s hard to overcome obstacles, work through tough situations and forgive yourself and others. I don’t do anything that any of the people following our journey wouldn’t do if they were living my family’s struggle.
The Spartan Race was something I was invited to join by Bert’s good friends, I wanted to be a part of it, to help raise awareness for ALS. To show myself that I can try and accomplish a goal and to get back to some of the normal stuff Bert and I used to do together like run and work out and fight over him trying to coach me. Today while doing the workout coach Bert made for me, I wished so much that he could be there with me running ahead because I am too slow and then coming back for me like he always did when we ran together. Even this Spartan journey caused some pain but that’s life, its hard and painful, and happy and sad and funny and miraculous.
So, no matter what your struggle is, your doing great! Even on the days you don’t feel like that’s true, cut yourself a break. Mistakes will be made, and things will happen you’re not proud of but forgive and say sorry and teach your kids that life will never be perfect, but it can still be amazing. Say I love you, say it out loud, say it every day to the people you love no matter what.
Obstacles are put in your way to see if what you want is really worth fighting for ~Spartan Race
AROO!!!
xoxo~Jennifer
I am no super star or role model, nor am I going to be a Spartan sprint queen😊. I am just a flawed middle aged chick who happens to have a husband who had the bad luck of getting sick with one of the worst diseases ever, ALS. My husband getting sick has been by far the most difficult challenge in my life. It forced me to take on life in a way I would have never dreamt of. I love my husband with all my heart, but it’s not easy being a full-time caregiver for your spouse. We are like any normal couple with all the same struggles of marriage and raising two teens, we just have a horrible terminal illness to deal with as well. We still fight and get angry, we just can’t stay mad because Bert might have to poop and I have to get him on the toilet hold him there and wipe his butt. We argue over parenting, he is strict, and I am not so much. He wants me to do things a certain way with the house and the yard and I really don’t care about fertilizer. We have different views and philosophies, we like different shows and have different interests, but we are stuck together like glue. It’s hard.
We both become totally exhausted, Bert with living with ALS and fighting his failing body every minute, coping with grief and the loss of his body while still being alive. He gets frustrated and down and angry sometimes. I am exhausted with care-giving because sometimes I just don’t want to take care of someone else 24/7 and with that feeling comes heavy guilt. I am tired of worrying and thinking about illness all the time. I am tired of equipment in every room of the house. I dwell on the things that ALS has taken from Bert like his voice, ability to swallow, ride a bike, run and walk and wipe his own butt, I would be happy if he could still hold his head up. I long for what we should be doing and wish for silly things like sleeping in the same bed and sitting on the couch together, and touch…I touch him all day long turning and re-positioning him, and feeding, dressing, brushing teeth and all those activities of daily living but it’s not the same as touch, real hugs and holding hands when there was life in those muscles. I must tell myself to focus and look for a positive, force myself to find one, make myself look around and be grateful for something. It’s not easy some days, and then there is more guilt. There is grieving everyday and the real grieving hasn’t even begun yet. We constantly have to tell ourselves to live because it’s easy to sink into sadness.
I have to work hard at not feeling resentful and abandoned by people, reminding myself that life keeps going no matter what we might be going through. Support ends up showing up in places and with people I never suspected. I must remind myself to let go of feelings that don’t help me, I have to remind myself not to assume what anyone else is thinking or feeling. I tell myself daily that I will never reach perfection and that’s OK. Actually since I lose my shit most days, I have to tell myself and my kids that’s it’s OK to scream and cry and fight and drop the F-bomb as long as we can say sorry and forgive and say I love you out loud to each other every day. Perfection is never going to be a thing…Perfection is never going to be a thing! Not in real life, not ever, not in any person’s situation and it’s OK. We are human, and we are flawed, we make mistakes and it’s OK. That’s me most days trying to convince myself…and again guilt creeps in.
My point is this, everyone is struggling with their own journey in this life, and no one struggle is lesser than another. And everyone working through a struggle is inspiring, because it’s hard to overcome obstacles, work through tough situations and forgive yourself and others. I don’t do anything that any of the people following our journey wouldn’t do if they were living my family’s struggle.
The Spartan Race was something I was invited to join by Bert’s good friends, I wanted to be a part of it, to help raise awareness for ALS. To show myself that I can try and accomplish a goal and to get back to some of the normal stuff Bert and I used to do together like run and work out and fight over him trying to coach me. Today while doing the workout coach Bert made for me, I wished so much that he could be there with me running ahead because I am too slow and then coming back for me like he always did when we ran together. Even this Spartan journey caused some pain but that’s life, its hard and painful, and happy and sad and funny and miraculous.
So, no matter what your struggle is, your doing great! Even on the days you don’t feel like that’s true, cut yourself a break. Mistakes will be made, and things will happen you’re not proud of but forgive and say sorry and teach your kids that life will never be perfect, but it can still be amazing. Say I love you, say it out loud, say it every day to the people you love no matter what.
Obstacles are put in your way to see if what you want is really worth fighting for ~Spartan Race
AROO!!!
xoxo~Jennifer
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