What Would You Want?

I often think about leaving my children behind, not at school…in life. I think about it and I’m terrified about it happening, of missing out on their lives, of them living those lives without a mother, feeling that loss at such a young age. That fear causes me to avoid doing anything to give them something to remember, to hold on to, to give them comfort when they need a mom – or a whole family – if I’m not there. If I write for them, record stories, put together photo albums or any of the other things I’ve heard suggested, what if it means I’m done? What if finishing that list of things triggers something?

When I was pregnant with my daughter, I was 4 days past her due date. It was 105 degrees outside and we had no air conditioning. I was desperate to get that baby out of me. I ate every spicy food we could get our hands on, I moved rocks in the back yard (we were going to start a landscaping project – it wasn’t just a random act), I walked a lot…pretty much anything that you hear can help spur on labor. I had a gardening project I was saving for after she was born and finally, I had run out of things to keep me busy so I just said ‘srew it’ and got started on it. It involved attaching galvanized containers to the fence and planting herbs in them. I had literally just finished planting the LAST herb (basil) and my water broke. Clearly, this is indisputable proof that if I’ve got planned projects and I just go ahead and finish them, big things will happen. Right?!

While I’m optimistic that I’ll be around for a while yet, I’m afraid that if I don’t write to them or do some of those things that will help them remember me and support them through their grief I may miss the chance and be too late. So, I have this conflict of finishing that list and triggering the worst OR finishing the list and feeling relief because it’s done if the worst should happen unexpectedly. While it may be a clear choice when written down like that, for some reason it’s one of my biggest struggles. It’s where my strength falters.

I don’t mean to be pessimistic, I think it’s more realistic. I will die – we all will at some point. I want my children to know they were everything to me, that I wouldn’t ever leave them if I had the choice. I want them to have memories as they grow, to have something that will wrap them in the warmth of a hug and make them feel safe, to have something that will remind them I’m there in those big moments in their lives – telling them all the things I would have said if I were standing in front of them as they graduate, marry, have children, save the world.

For those who have lost a parent, I don’t want to bring up feelings of loss that have already been worked through, but I want to get this right. In my connections in the cancer community (stupid cancer – there’s enough of it that we have a community), I’ve met young people who’ve lost their moms or dads to cancer. I would love to hear from some of them what helped with their grief, what did their parent leave behind to let them know they were loved beyond words, what helps them when they’re in need of a parent (advice, hugs… whatever) who is no longer around. What don’t you have that you wish you had? What would comfort you? What would help you move on from the grief with strength and confidence, knowing that parent is in your heart and with you always. What advice would you have for those of us at risk of leaving our children behind?

27 thoughts on “What Would You Want?

  1. When I knew that you had brain cancer I knew I needed to do something for you and me. As I told your mom, I started a lap quilt and I can’t finish it. I’m not a superstitious person but there was this little tickle in my being that said, “What if my finishing the quilt is connected to your fight. So I’ve not finished it just as you have not finished. I’ve made lots of mistakes in it but I will work on it again and get it sent to you. And it will be mostly done but not completely.

  2. Not exactly the same, but I’ve found comfort in knowing my family history. And especially knowing how my dad fit into that. Anecdotes about how he challenged conventions or culture, how he dealt with his own setbacks or grief. It gives me insight into how he faced life and the world, and inspires me to have the same kinds of strength, because I am his daughter.

  3. Karen,

    Five years ago I lost my father to cancer. Three years ago, my sister died from double pulmonary embolisms, and two years ago my cousin, who was much more like a sister, died unexpectedly from an accidental suffocation. Although I am not a child, I still lost them much too early. What gets me through the sadness when I want to call and talk to my dad or sister or cousin, is the time I spent with them, especially in the last years before their deaths. Remember that our actions speak louder than our words. Your children will remember the time you spent with them and the things you did with them. They’ll remember you helping them with their math facts, navigating through their social and friendship problems, and decorating cookies at Christmas. They’ll remember how you taught them to clean their rooms. They remember the special times and the mundane, daily things too. The things that my children remember about those close to us that have left us too early are these: the times that my cousin Sherry took them swimming at her boyfriend’s house; the time that Grampy helped Bella with her flashcards; the time that they spent the night at Aunt Missy’s house. I know it isn’t much, but I hope it helps…


  4. Karyn – it is very scary and yet you are so very brave and such a strong woman. My thoughts are to continue doing what you’re doing. Cherish each moment you spend with your loved ones, creating memories in the present. Think about what makes you smile and share that with them and record those moments to be called upon, when needed, to boost spirits. Know that you are an inspiration and are loved – we are with you.

  5. Karyn, this is such a difficult and sad subject and you word it so well. My dad was only 6 years old when his mother died and she died of typhoid fever. They all had it but the rest of the family survived. He and his sister are no longer here to ask how they coped but I do know they had a horrible childhood after she was gone. My grandfather traveled a lot and left the children in the care of his mother and an abusive sister.

    When they were in high school their maternal grandmother sent them all the letters she had received from their mother through her short married life. The letters were very upbeat and the grandmother I never got to meet sounded so happy. My aunt said they gave her great solace and helped her know her mother a bit. I now have those letters and will pass them on to my children.

    I think the entries in your blog will someday help them know you better and to know just how much you love them but let’s all hope that you’ll be sitting beside them when they read “Everyday Left”.

    Kathy Enders

  6. Hi,
    I lost my wife recently to cancer. She leaves behind two little boys, so I’d like to leave some advice. Feel free to ignore it! And also I apologize for the grim nature but Im going to get right to it:

    Here is what she did all with the children in mind
    Part 1: The PRACTICAL
    1. Die in a hospice, not the home. Do not haunt the home.
    2. Be cremated. She did not want a skinny-as-bones frail plastic looking still-life in a coffin as her children’s last visual. When the kids are older, I plan to take them and spread her ashes over some place meaningful.
    3. Your social security checks can be used by them. When you die, your husband needs to go social security with a death certificate of cause (the funeral service will help you with these). SS are great and will step him through it.

    Part 2: The EMOTIONAL
    1. A scrapbook. Make it with your children. Pictures of you together. It is both cathartic for you and a keepsake.
    2. A written message. My wife opted out of a video, it is a powerful medium. She instead opted to write a message.

    Well thats all. I wish I could help with more and of course my heart goes out to you and your children. Contact me if you want.

    • Oh just to add one tidbit. Do not delay. You will unfortunately degrade in steep steps in your journey.

      We start out choosing to live and pursue a cure, walking on the right side of the street. Then, as hope dims we find ourselves needing to walk on the opposite side of the street towards dying well.

      Trying to walk on both sides of the street at the same time is a large expenditure of energy: Do you die well or do you fight to the end. I do not know much of your situation, but I can tell you that that decision (which side of the street you are on), is personal to you and I wish you all the best. My heart goes out to you.

    • DyerwareDoug is right on point. I lost my mom to cancer when I was 23 (18 yrs ago). My dad took his own life 3 yrs later. Neither intentionally left me and my sister (3 yrs older) with anything to remember them by.

      I love this advice. Especially the written/journaled piece. Personalize some written, super practical “advice for life”. 15-18 yrs after losing my folks…and even now as a grown man, I very often find myself wishing I could pick up the phone and ask my mom how to make those delicious date nut balls she delighted us with during the holidays … or asking my dad to remind me of those funny jokes/stories that had us rolling with laughter as kids (now that I have little ones of my own).

      My prayers are with you. All your kids want to know and be reminded of is that they are your everything. Anything you can scribble down and handoff to them will mean absolutely everything to them.

  7. I lost my biological father when I was 2 years old to cancer. With the technology then it was barely possible for him to leave me a message. I would have loved to hear his voice, see his expressions, and have some typical “dad” advice given to me… even on tape. This blog is fantastic, but from experience, something recorded would have been nice. Something long-lasting, maybe for the world to see (like through onestory.com), maybe kept private. All the best!

  8. My wife died of a brain tumor when my son was two. We had talked about her leaving a video, but we decided against it thinking that the video would become frozen in time, a document that would become enshrined and exist out of context. I never regretted that decision. I tell my son about her all the time and he likes visiting her grave.

  9. My Dad died suddenly when I was six. My mom wrote a short note to me that was from him, telling me how much he loved me. I never realized until I was older that she wrote the letter.

    I can remember how much he’d play and laugh with me. And all the little crazy things he did (I liked to have the shower jets on me, so he’d hold me up closer as a little kid—again and again).

    I don’t think there’s anything to leave, because they already feel so much love and that will never go away. Maybe if wrote a short note for each of them, as something they can hold, you’d know a tangible way to read/connect is there.

    That said, it’s just an exercise to know feel there’s nothing more to leave. I guess it’s ok to ease the mind, even though it’s not the right time to go anywhere. Better to stick around, see them grow up, and do more gardening.

    Thank you.

  10. Karyn,

    This is difficult for me to read, as you could imagine. In fact, many of your posts are difficult to read…I hope you understand. However, I try to read some every once in a while so I can get filled in on how your doing. Your witty and easy going writing makes these posts so interesting. This one, in particular, hits home for me. While I cannot tell you what to do or what to think because, well, no one can…I can give you my opinion. I didn’t get to say goodbye to my mom. There weren’t any letters left. There were just memories…and while memories are important, they are hard to hold on to as the years go on. So, in my opinion, putting something in writing could be something that, when your children do experience this (which won’t be for a long long long long time), they will have a piece of you…an important piece…your words. Pictures are a treasure, yes, but there’s something about words on paper that hold such an immense symbol for meaningful things. I digress…if you feel like writing Lucia and Beckett then do so! If nothing else, you are sharing your warm and loving feelings with them, and there is NOTHING wrong with that no matter how big or how small we are, or if we are here or not. Do it, but don’t do it as a “goodbye” do it as a “I’m writing you because I love you and I want my words to be with you always” Thinking of you on the East coast. xoxo

  11. Dear Karyn,

    I lost my mother when she was fifty- two and I was twenty-seven. We were estranged at the time and as I look back we never had the connection that I hope I have made with my five children and their fifteen. I adore them all…unconditionally. I savor their differences (a gift from my mother- in- law…who said…never accept, savor) It’s amazing that I carry so much of her wisdom and so little of my mothers into my life..
    If I could have her back with me I would want to know how she felt as a young bride…a new mother. I would love to think that she was proud of me. We did not exchange I love you’s easily. My family was not one quick to praise, lest we be boastful. I know so little about her. And I never will.

    You have such a fabulous and connected family. You tell them every day in everydayleft how amazing they are. You have posted in this incredible blog your hopes, your fears, your dreams and your wishes for them.

    You are truly the most brave, amazing and legendary woman I have ever had the joy of knowing.

    In closing…I remember my mother’s laughter. I remember her smell and her loving school lunches four triangles of grape jelly on white bread with the crusts cut off. I remember that she taught me how to dance and I would give anything if she could have been half the mother that you are.

    This is not a finale for you…you are telling everyone in everyday who you are and .have no fear, you are going to be with every one of us, guiding,,,bringing humor, and showing us all the way to live….every day!

  12. I lost my father in 2001 when I was 16.

    12 years on and it’s become a lot easier and I’ll be honest and say I rarely think of him. Although when I do, I have very little that I can still remember.

    Sometimes we haven’t forgotten, we just need the right thing to trigger the memory. So I wish he had left behind letters and just one video of himself. So I can remember the tone of his voice and read what he thought about life.

    I’d hope these thing would help me remember things I’d thought I may have forgotten.

    You’ll find the right mixture of things to leave behind for your children. A lot of it will also come from those who love you that will introduce stories about you to your kids when the time is right.

    And don’t fear them forgetting. They’ll never forget you, over time they will make peace and life will go on, but they will remember when they need to.

  13. Karyn,

    I lost my father almost 30 years ago when I was 12. While I know him as a dad I never got to know him as a man. I never got to hear his philosophy on life, on parenting or any of the other things that as a teenager I would have rolled my eyes at or as a 20 year old would have ignored.

    But now I would love to have a letter or a video with him talking about the day-to-day life he led, what struggles he had, how he dealt with them – just the normal parts of being an adult. Anything that would allow me to see the connections I had with him and to see if I am like him. It might seem mundane but those are the things I feel I missed out on.

    I admire your strength and my thoughts are with you.

  14. My friend Gemini Adams wrote the book “Your Legacy of Love: Realize the Gift in Goodbye”, which is about the exact dilemma that you are pondering right now: How people can minimize the suffering for those that survive them by taking advance action to realize the gift of goodbye.

  15. Karyn, I lost my Dad two years ago… as hard as it was I can say I have no regrets.. we spent every moment we could together as a family… before his first surgery we rented a small cottage on a lake and made memories.. after he was better, I went hunting with him for the first time in 30 years..we didn’t’ see a thing, we talked all day. When the cancer came back… we did a lot as a family getting together and just talking and telling stories. When we knew that there was a short time and nothing we could do we spent even more time together, talking, telling stories, laughing crying.. I took pictures of him and my Mom, my kids, my siblings.. and my favorite him holding my hands.. I cherish those photos and all that time, we called it soaking it up, we were sponges soaking up all we could in a short time. All I can say as record stories for them about when they were born, how you met your husband, about when you were a child, about who you are, record how much you love them, take photos, soak it all up and let them soak it all up.. Do what ever you can together as long as you can.. those memories, spoken words will be with them always… I know for me pulling out Christmas videos in the dark and watching just to hear Dad say my name is wonderful, watching the building of our home with Dad talking and singing and whistling, are treasures…

  16. Hi, you don’t know me and I don’t know you, but I came across this post via http://www.loopinsight.com. It’s something that I’ve thought about since my father, not entirely unexpectedly, passed away over a year ago and I’ve considered how I might leave something for my little daughter, in case I’m not around when she’s older.

    Make a video (a talking head, nothing fancy), talking about yourself, where you came from, who your parents were, what sort of a person you are deep inside, a frank and honest monologue. Stick it on a DVD or what have you. There’s so much that I found out about our father after he had passed from the detritus he left behind, by inference, from stories, and I hope that my daughter won’t need to learn about me one day by forensically examining old postcards.

    I don’t know if that helps, but it already sounds like you’ll leave a legacy for your children no matter what you do.

  17. I had a friend—his father died of cancer when he was 4. The father wrote a book of poems for his son, that he kept with him when I knew him as an adult. It seems you’re doing that, in your way. Words have a power, and imagination builds the best memories…

    Good luck to you, and enjoy every day!

  18. First of all I have to say from what I have read, you are a brave and wonderful woman. I lost my mother to liver cancer 3 years ago when I was 21. I am still heart broken to this day and I think a part of me always will be.I wish I had more time with her as well as more appreciation for her. With that being said, I think if I could go back knowing what I know now, I would have wanted to have had more pictures and videos of us. If she could have just written me letters or anything that may have given me some strength when I needed her most, maybe I might be a little more at peace. I live everyday knowing that my mother loved me more than anything. I think that is the best thing she could have ever given me. I am so thankful for that. So know that when or if your time comes too soon to leave your children, that as long as they know you were proud and loved them, you will be with them and live on in them. I always say, everyday I become more and more like my mother. I couldn’t be more proud.

  19. I lost my mom after a very brief illness (in which she spent the majority of it in a coma) at the age of 14. I’m now 20 years old and I miss her desperately.

    Because her illness was so brief, she was unable to leave myself or my sister with anything besides memories. As wonderful as my memories of mother are, they’re beginning to fade six years later. There is also never a doubt in my mind how much she loved me, but I wish I had something tangible to remind me on the rough days.

    Every little girl dreams of having her mom in the audience on graduation day, smiling proudly in the front row on her wedding day, and holding your newborn child. I’m jealous of those whose moms were physically there to experience all these important events. Having a short letter from my mom on these special days would have been amazing and meant so much.

    I think it’s important you do something for your children while you still can. Sometimes life can take a dramatic turn, and no one (regardless of their previous health) is promised tomorrow. Take advantage of your time now and leave something for your children to cherish forever.

  20. Pingback: Grief cycling | Human In Recovery

  21. I wish I had letter from my mom for big life events she’s missing. Things like graduation, weddings, children’s births…. all of it. Even smaller events would be nice. Parenting advice from my moms point of view or just life advice in general. I don’t sit and wish she had left me a blanket or a video or anything else. I just want her words and to know that she’ll be ok and missing me too.

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