Hi y'all,
Another two weeks have passed since my last update but I have not been sitting around doing nothing. In the past two weeks my brother, sister and me have been busy organizing my parent's 45th wedding anniversary. We made sure my parents could enjoy the party so we took care of decorations, food and drinks. We arranged (cooked/baked) and brought over all the food and drinks and an amazing set of volunteers from the church my parents used to visit made sure non of us had to lift a finger serving it all. The party was beautiful and very emotional too. The number of guests was heart warming and the love everybody showed for my parents was touching to the core. Most people are shocked and horrified to see how rapidly my mom's bulbaire ALS is progressing and knowing the 100% mortality rate of this disease makes each and every moment with my mom precious. As y'all know I am fundraising for the ALS association in the Netherlands and me and my family are impressed and overwhelmed by the number of donations we have received for our individual fundraising campaigns. We can't stress enough how important those donations are. All research funds come from people like you donating to the ALS association either via fundraisers done by people like me or directly to them. All research breakthroughs (and since the Ice Bucket Challenge there have been a few very important ones) are made possible by individuals and companies donating money.
The past few months made me realize something too: I want to know so much about my mom's life and time is short now. Watching my mom I realized that my mom has lost the ability to speak and since that has happened I have witnessed first hand the change the world around her has made in communicating with her. Some people (unintentionally and out of good intentions I presume) talk to her like she is deaf or mentally challenged, neither of which is the case. It is devostating to see how her inability to speak isolates her due to the fact that most people simply don't have the patience to wait for her answer. She has a voice computer that translates written text to speach. Watching her navigate, shrugging her shoulders and telling me to not be upset by all of this, I tried to think of a way to show everybody what it is like to talk to my mom. Because you can actually still talk to her. And that is what I want to do; talk. So I decided to interview my mom and that is the project I have been working on the past week.
You can watch our interview in Dutch (without subtitles) here Interviewing my mom and I hope y'all do. It took my mom a lot of courage to do this but both my parent's whole heartedly agree that the result is beautiful as it is painful and with their permission I get to share the interview on my blog.
Today's post isn't much about my running adventures even though I did have a big one. This post is dedicated to my mom because in the end I started my marathon adventure to make sense of something incomprehensible. I want to make this world a little better and I want to make sure that generations to come do not have to witness their loved ones fade away the way we are doing right now.
That's it for now,
until we read again, as always,
Love, Marlies
Another two weeks have passed since my last update but I have not been sitting around doing nothing. In the past two weeks my brother, sister and me have been busy organizing my parent's 45th wedding anniversary. We made sure my parents could enjoy the party so we took care of decorations, food and drinks. We arranged (cooked/baked) and brought over all the food and drinks and an amazing set of volunteers from the church my parents used to visit made sure non of us had to lift a finger serving it all. The party was beautiful and very emotional too. The number of guests was heart warming and the love everybody showed for my parents was touching to the core. Most people are shocked and horrified to see how rapidly my mom's bulbaire ALS is progressing and knowing the 100% mortality rate of this disease makes each and every moment with my mom precious. As y'all know I am fundraising for the ALS association in the Netherlands and me and my family are impressed and overwhelmed by the number of donations we have received for our individual fundraising campaigns. We can't stress enough how important those donations are. All research funds come from people like you donating to the ALS association either via fundraisers done by people like me or directly to them. All research breakthroughs (and since the Ice Bucket Challenge there have been a few very important ones) are made possible by individuals and companies donating money.
The past few months made me realize something too: I want to know so much about my mom's life and time is short now. Watching my mom I realized that my mom has lost the ability to speak and since that has happened I have witnessed first hand the change the world around her has made in communicating with her. Some people (unintentionally and out of good intentions I presume) talk to her like she is deaf or mentally challenged, neither of which is the case. It is devostating to see how her inability to speak isolates her due to the fact that most people simply don't have the patience to wait for her answer. She has a voice computer that translates written text to speach. Watching her navigate, shrugging her shoulders and telling me to not be upset by all of this, I tried to think of a way to show everybody what it is like to talk to my mom. Because you can actually still talk to her. And that is what I want to do; talk. So I decided to interview my mom and that is the project I have been working on the past week.
You can watch our interview in Dutch (without subtitles) here Interviewing my mom and I hope y'all do. It took my mom a lot of courage to do this but both my parent's whole heartedly agree that the result is beautiful as it is painful and with their permission I get to share the interview on my blog.
Today's post isn't much about my running adventures even though I did have a big one. This post is dedicated to my mom because in the end I started my marathon adventure to make sense of something incomprehensible. I want to make this world a little better and I want to make sure that generations to come do not have to witness their loved ones fade away the way we are doing right now.
That's it for now,
until we read again, as always,
Love, Marlies
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