Hi y'all,
When words are absolete and time moves on the thing that remains is love. My mom knows her time with us is running out and she knows when she wants to leave this earth. Now I know the controversy, political and religious believes about life and who's it is to take but it isn't relevant anymore. Nothing is. The only thing we want, oughta and need to do is sit by her side as she embarks on her last great journey taking her to a place she can't discuss with us. And that has proven to be far more difficult than I ever imagined it would be.
Not because I'm scared, not because I'm choking on grieve, not because I'm awestruck by her courage, not because I'm mad that there still isn't an aswer to this asshole disease. Not because any of all that even though it is all there and I'm going through it all. It is unimaginably hard because of everything and everyone. The ones who are too scared to see her and therefore have stopped coming over completely isolating her even more. The ones who are there and feel the need to tell me what is done and isn't done etiquettewise and by doing so completely overstepping each and every boundry not recognizing I'm losing MY MOM of which I have only one and who I used to call EVERY DAY since the day I left home at 17. The ones I end up comforting when they cry on my shoulder. The ones who seem to hate me for the way I need to go through this; talking and writing about it and YES my mom is an example for why we need to keep fundraising.
It is oxygen deprivingly hard because I feel there is no right way to grieve. Nobody is right. Not me, not you, not anyone. The last thing my family or I myself need right now is anyone's idea on how to do this when clearly only a handful of people go through this each year and most likely you never did (I would have known if you did). Please stop telling us what to do, what to feel, what to think or not to. The only thing you're accomplishing is adding to the amount of unbreathable garbage we already have to deal with. So if this applies to you I'd like to tell you:
So what do I do to help myself get through it? I run and it hurts. It literally feels like all of the emotions I'm having are stuck in each and every viber of my muscle tissue. I'm out of breath faster than a gold fish out of it's bowl. My legs won't carry me and sometimes out of what seems to be nothing I have these huge cries. You know the kind that makes your face all ugly. The seriously ugly-snot-crie ones? Those. I have them. Like all the time and they come on at the most inapropriate moments. I run to get it all out but it's stuck. It is all stuck. But I keep trying because I owe my mom that much. Come Monday I have a 10km run and I am sure it will be my worst ever. I will be surrounded by this tight community of people that actually know first hand what it's like since they lost a parent or partner to MND. I'm sure I will walk half of the course but I don't care. I want to be there. I need to run. My body needs to heal as much as my soul does. So I run, I write and I fundraise. Because I will be damned if we can't find an answer. That to me is just impossible, untrue and so NOT happening. We CAN find an answer and we need to. We owe it to all of the people I have gotten to know this past year.
So I run, I work even harder on realizing volunteer teams + fundraing activities and I log miles on charity miles. I do whatever I can to raise awereness & to help fund scientific research and next to all of that I do whatever I can to be there for my mom, brother, sister and dad. I try my GD hardest to help us all get through this. There is no right in this....which only shows that there is no WRONG either.
Fix this shit we must! So...keep it unreal and make it happen. No limits, no regrets.
Until we read again, as always
Love, Marlies
When words are absolete and time moves on the thing that remains is love. My mom knows her time with us is running out and she knows when she wants to leave this earth. Now I know the controversy, political and religious believes about life and who's it is to take but it isn't relevant anymore. Nothing is. The only thing we want, oughta and need to do is sit by her side as she embarks on her last great journey taking her to a place she can't discuss with us. And that has proven to be far more difficult than I ever imagined it would be.
Not because I'm scared, not because I'm choking on grieve, not because I'm awestruck by her courage, not because I'm mad that there still isn't an aswer to this asshole disease. Not because any of all that even though it is all there and I'm going through it all. It is unimaginably hard because of everything and everyone. The ones who are too scared to see her and therefore have stopped coming over completely isolating her even more. The ones who are there and feel the need to tell me what is done and isn't done etiquettewise and by doing so completely overstepping each and every boundry not recognizing I'm losing MY MOM of which I have only one and who I used to call EVERY DAY since the day I left home at 17. The ones I end up comforting when they cry on my shoulder. The ones who seem to hate me for the way I need to go through this; talking and writing about it and YES my mom is an example for why we need to keep fundraising.
It is oxygen deprivingly hard because I feel there is no right way to grieve. Nobody is right. Not me, not you, not anyone. The last thing my family or I myself need right now is anyone's idea on how to do this when clearly only a handful of people go through this each year and most likely you never did (I would have known if you did). Please stop telling us what to do, what to feel, what to think or not to. The only thing you're accomplishing is adding to the amount of unbreathable garbage we already have to deal with. So if this applies to you I'd like to tell you:
So what do I do to help myself get through it? I run and it hurts. It literally feels like all of the emotions I'm having are stuck in each and every viber of my muscle tissue. I'm out of breath faster than a gold fish out of it's bowl. My legs won't carry me and sometimes out of what seems to be nothing I have these huge cries. You know the kind that makes your face all ugly. The seriously ugly-snot-crie ones? Those. I have them. Like all the time and they come on at the most inapropriate moments. I run to get it all out but it's stuck. It is all stuck. But I keep trying because I owe my mom that much. Come Monday I have a 10km run and I am sure it will be my worst ever. I will be surrounded by this tight community of people that actually know first hand what it's like since they lost a parent or partner to MND. I'm sure I will walk half of the course but I don't care. I want to be there. I need to run. My body needs to heal as much as my soul does. So I run, I write and I fundraise. Because I will be damned if we can't find an answer. That to me is just impossible, untrue and so NOT happening. We CAN find an answer and we need to. We owe it to all of the people I have gotten to know this past year.
So I run, I work even harder on realizing volunteer teams + fundraing activities and I log miles on charity miles. I do whatever I can to raise awereness & to help fund scientific research and next to all of that I do whatever I can to be there for my mom, brother, sister and dad. I try my GD hardest to help us all get through this. There is no right in this....which only shows that there is no WRONG either.
Fix this shit we must! So...keep it unreal and make it happen. No limits, no regrets.
Until we read again, as always
Love, Marlies
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