My mom came to visit. Phil was gone for 3 weeks and as she does every time the road gets bumpy here-which is like always- mom said- do you need me to come help? Because as a mom and a grandma it is part of her DNA, part of her nature to care for us. She wants to help and I know she has been deprived of the many grandmotherly experiences due to our location.
As a mom of teens, I am ever more aware of how quickly the time passes and that you never ever stop being a parent. I appreciate this in my relationship with my mom. As a cancer mom, I am aware of the strain this puts on a heart. Her baby has cancer. As a cancering mom, I am aware of the strains of mortality and want to impart on my kids the important lessons. My mom still tries to impart lessons in me. Like slow down, take care of yourself more, let the silly stuff slide. We all want the best for our kids and life's challenges shape how we go about this. I remember how much I wanted to make Lily better or at least things better for her. I know my mom wants to do the same for me.
She came, she slept on the couch, she played chauffeur, she cooked dinners, she took us out. She rearranged her schedule to stay when hurricanes threatened to extend Phil's trip. She ran around helping make sure we were prepared for impending doom. Because as a parent, that's really all we can do. You never know when the hurricane will hit- you do the best you can to be prepared and like parenting and life- your preparations may be in vain because the storm may not hit or it may wipe out all of your prep so it didn't matter. But it does matter.
We are nurturers. We are fixers. We create. We rebuild. We carry on. We enjoy the calm because we've weathered the storms. There are certain things you can prepare for. And just about everyone will tell you that prep helps but to go through something, to have the experience - is always something that no prep can prepare you for. Childbirth. Cancer. Hurricanes. There is a reason they are called grand-parents. It's the accumulated wealth of experience they harbor.
I worry that I won't get that experience. To be a grand. I want my kids to have whatever happily ever after they dream of. Out of 4 of them- I would imagine there will be grandchildren. It's tricky with LFS. Many mutants take alternative routes for parenting- IVF to select the non mutant embryos, adoption, or what I call the faith leap. Mine was a bit of a denial leap. Some call it irresponsible. I call it life. Everyone has a history. I knew mine included cancer. Ultimately parenting is a great big game of roulette. Genetics are only one part of the great big mixing bowl of potentially hazardous outcomes. I mean kids lick paint, eat poop, break things, like bones, couches, hearts. They get sick, they recover. Sometimes they don't. My brother got sick. I didn't. For 36 years. He only had 16. How do you quantify a life? How do you say those years aren't worth it? You just don't know until you try. They carry scars from the accidents we couldn't prevent. By heredity or through living. As do we. I wouldn't ever choose LFS for them. But I would never choose against them. It's not black and white. It's personal. I think of the young women and men who had the option to bear children taken from them because they had cancer. I worry for my children. And I am relieved I didn't have pressure to have or not have kids. By chance or design, I took the path and travelled it.
I was just discussing with a friend how we only get what we can handle and well we'd kinda like the bar to be set a little lower. At a benefit for Living LFS, a non profit started with some dear mutant friends, I handed out brochures with information about LFS. A young boy read through it and followed me around asking questions. It was pretty profound until he had collected his information, looked at me and said- So why don't they just stop having kids so they don't pass it along? It would stop there. And so did my heart.
It certainly would. And I don't want to live in THAT world. I'm not saying I wish LFS on anyone. I don't want cancer. I don't want my kids to have cancer. I don't want ANY kids to have cancer. ever. In life there are NO guarantees. People without LFS get hit with cancer all the time. There are dozens of other "hereditary" cancer syndromes. We will find out more. 50% of cancerous tumors have mutated TP53. The same mutation I have in all my cells. We are a small but important group to this war on cancer. There are SO many things that could and do go wrong. But without the disasters, we lose the perspective that was forced on me and other mutants. That life is unpredictable and precious. That you can't always choose who you love. You just have to love them with all you got for the time you have. You can't always FIX it. You can prepare all you want and sometimes luck just isn't on your side. Find faith in God, or love, or friendship or family. Find what gets you through because there will be tough times.
SO I took a lesson from my mom. Today I snuggled on the couch with Bella. I took Phillip for coffee, we talked about science and medicine and biology. Kiera and I cleaned the kitchen and listened to her favorite songs- for the 300th time. And Lily and I accomplished 2 pages in a scrapbook. And it was grand. I can't imagine a world without a Phillip, or a Kiera or a Lily or a Bella. Mutated DNA and all. We are not perfect. We may not live forever but for now we have these moments. And they are Grand.
As a mom of teens, I am ever more aware of how quickly the time passes and that you never ever stop being a parent. I appreciate this in my relationship with my mom. As a cancer mom, I am aware of the strain this puts on a heart. Her baby has cancer. As a cancering mom, I am aware of the strains of mortality and want to impart on my kids the important lessons. My mom still tries to impart lessons in me. Like slow down, take care of yourself more, let the silly stuff slide. We all want the best for our kids and life's challenges shape how we go about this. I remember how much I wanted to make Lily better or at least things better for her. I know my mom wants to do the same for me.
She came, she slept on the couch, she played chauffeur, she cooked dinners, she took us out. She rearranged her schedule to stay when hurricanes threatened to extend Phil's trip. She ran around helping make sure we were prepared for impending doom. Because as a parent, that's really all we can do. You never know when the hurricane will hit- you do the best you can to be prepared and like parenting and life- your preparations may be in vain because the storm may not hit or it may wipe out all of your prep so it didn't matter. But it does matter.
We are nurturers. We are fixers. We create. We rebuild. We carry on. We enjoy the calm because we've weathered the storms. There are certain things you can prepare for. And just about everyone will tell you that prep helps but to go through something, to have the experience - is always something that no prep can prepare you for. Childbirth. Cancer. Hurricanes. There is a reason they are called grand-parents. It's the accumulated wealth of experience they harbor.
I worry that I won't get that experience. To be a grand. I want my kids to have whatever happily ever after they dream of. Out of 4 of them- I would imagine there will be grandchildren. It's tricky with LFS. Many mutants take alternative routes for parenting- IVF to select the non mutant embryos, adoption, or what I call the faith leap. Mine was a bit of a denial leap. Some call it irresponsible. I call it life. Everyone has a history. I knew mine included cancer. Ultimately parenting is a great big game of roulette. Genetics are only one part of the great big mixing bowl of potentially hazardous outcomes. I mean kids lick paint, eat poop, break things, like bones, couches, hearts. They get sick, they recover. Sometimes they don't. My brother got sick. I didn't. For 36 years. He only had 16. How do you quantify a life? How do you say those years aren't worth it? You just don't know until you try. They carry scars from the accidents we couldn't prevent. By heredity or through living. As do we. I wouldn't ever choose LFS for them. But I would never choose against them. It's not black and white. It's personal. I think of the young women and men who had the option to bear children taken from them because they had cancer. I worry for my children. And I am relieved I didn't have pressure to have or not have kids. By chance or design, I took the path and travelled it.
I was just discussing with a friend how we only get what we can handle and well we'd kinda like the bar to be set a little lower. At a benefit for Living LFS, a non profit started with some dear mutant friends, I handed out brochures with information about LFS. A young boy read through it and followed me around asking questions. It was pretty profound until he had collected his information, looked at me and said- So why don't they just stop having kids so they don't pass it along? It would stop there. And so did my heart.
It certainly would. And I don't want to live in THAT world. I'm not saying I wish LFS on anyone. I don't want cancer. I don't want my kids to have cancer. I don't want ANY kids to have cancer. ever. In life there are NO guarantees. People without LFS get hit with cancer all the time. There are dozens of other "hereditary" cancer syndromes. We will find out more. 50% of cancerous tumors have mutated TP53. The same mutation I have in all my cells. We are a small but important group to this war on cancer. There are SO many things that could and do go wrong. But without the disasters, we lose the perspective that was forced on me and other mutants. That life is unpredictable and precious. That you can't always choose who you love. You just have to love them with all you got for the time you have. You can't always FIX it. You can prepare all you want and sometimes luck just isn't on your side. Find faith in God, or love, or friendship or family. Find what gets you through because there will be tough times.
SO I took a lesson from my mom. Today I snuggled on the couch with Bella. I took Phillip for coffee, we talked about science and medicine and biology. Kiera and I cleaned the kitchen and listened to her favorite songs- for the 300th time. And Lily and I accomplished 2 pages in a scrapbook. And it was grand. I can't imagine a world without a Phillip, or a Kiera or a Lily or a Bella. Mutated DNA and all. We are not perfect. We may not live forever but for now we have these moments. And they are Grand.
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