Off my chest

I don’t know that you want to read this today.  It’s here because I finally wrote it down last night at 3 a.m. and I promised to share everything about this journey with you.  Well, this is part of everything.  If you want to click away, that’s fine.  Here’s a great place to click that will make you feel good about all the good in the world, and even give you a chance to be a part of it.  But for those of you who stay — I need to say this out loud.

I am not afraid of dying.

I am afraid of being stuck.  Here, in this bed again, comfy though it may be, alone and tired.  Helpless.  My brain perfectly fine, at least after a stretch and some exercise (hello, twitter!), but my body deadened to the world, still, motionless.  Unable to move substantially day after day after day.

Listening to my children play downstairs with someone else, I ache at every laugh. 

Later, in the middle of the night, my thoughts wander to how things will change, when I get better (we’ll eat right! play outside every day! invite friends over!), and then, when, inevitably, I get worse again.

I wonder if maybe we will get a hospital bed downstairs, when the time comes, if we’ll put it midst the playroom, with its hulking rolling wheels crushing matchbox cars and trains and other things little boys make go ZOOM! 

Zoom was Little Bear’s first word, or one of them at least, and I wish I could remember what the first one actually was.  I was there, I know it, but I can’t seem to pull it out of my brain. 

Today, though, today I remember.  Today I was holding him gently after his bath, looking into his eyes and giving him a little tylenol to help relieve his teething (1 year molars — all at once!), and he said YUM.

Bear is a strong little baby.  A little boy, really, from the moment he came out of my womb, sat up, and looked around at the doctor and nurses, me and WonderDaddy, as if to soak it all up before deciding whether to laugh or cry.

He is a very strong kid, pushing me away even as a newborn at the breast, and now when he twists in my arms and kicks my radiation burns, I am ashamed to say … it hurts.

Bear is being raised by his Mommy and Daddy and Grandmas and Grandpas and friends — and he is thriving.

But a small selfish part of me wants to still be his world.  Like it was before.  In the old days. 

Before I got cancer.

My oldest child and I are joined at the heart.  He doesn’t know life without me; I am his constant companion and best friend.  He told me so, once, when he had just learned the concept, and it melted my heart completely.

Now he is growing up.  At 3 1/2, he has deemed himself too big for kisses and hugs, unless he is very, very sleepy.  He “wipes ’em all off” with those words and a determined swipe of the back of his hand or tells me declaratively, “Me not like your kisses, but me still love yoooooooou!” which makes me love this independent, attached, bonded child all the more.

I still watch him sleep sometimes, whispering in his ear that I will always love him, that I will always keep him safe.

I stopped doing that for a while, worried that I was making promises that I won’t be able to keep, but I have consciously started again.  No matter what, I will always be with him.  I am confident of that now.  I will get better, and I will protect them and laugh with them and help them and teach them and discipline them when absolutely necessary.  I will.  But then, if and when the day comes that I cannot be here with them any longer, I have a plan.

If I can no longer be with them here on Earth, I will be with these children in spirit.  I have thought about this, prayed about this, reasoned about this, and am determined beyond all doubt to make it so.  I have wrestled with a physicist’s conscience and a presbyterian’s heart, and come out the other side with a modicum of peace on this issue. 

I am assured now that I will be their angel, tripping along in my wings if I get them, safeguarding their every step, and picking them up when they fall anyway.  I cannot imagine ever letting go of such love, this baby-tickling, preschooler-teaching, both-ears-listening, all-encompassing mama love, and I will be with them always, in spirit if not always in body.

This body — it’s seen better days.  The light of my child’s nightlight reveals scarring and bruising and broken bits where there were none just four years ago, when this nursery was new.  My arms are scarred with holes from the chemotherapy injections, the veins closed, the hands dotted with dark spots where they were used as well.  The muscles in my arm are twisted and scarred with nerve damage from the surgery and swollen with the lymph that no longer remembers where to go on its own.  My breasts are now only a jagged line, port to starboard, and my belly a hollow reminder of the joys of carrying the boys there, long ago, before they were born.

Before they were born, I was a woman and a scientist and a friend, but not yet my whole self.

My heart grew and expanded beyond all measure, with the arrival of each of my loves.  WonderDaddy first, then Widget, then Little Bear, all crowded now in bed with me, piled one around the other like a pile of sleeping puppies.

Only I cannot sleep. 

I lie awake, not afraid of dying.

Afraid of being separated from this, my love.

This post is original to Toddler Planet and may not be reproduced without permission.

71 Responses to Off my chest

  1. Randi says:

    You are so very, very brave. I fear death, and fear not being with my children when they grow up. I fear something happening to my children, and then realize that I would rather something happen to me than to them.

    You are very brave – not just to not fear death, but to write this post. Thank you.

  2. ~JJ! says:

    Oh Mommy.

    Thank you for sharing this…I understand. I feel these fears too. I do.

    Thank you for being brave enough and brilliant enough to put your words out there. They mean so much to me, personally.

  3. thordora says:

    Thank you for letting me listen.

    I’m not dying, but I fear losing them, my daughters, my family more than any pain. To love, to finally love and then maybe have it snatched.

    I feel it too, distant, but throbbing still.

  4. Trisha says:

    Thank you for sharing this. You are making differences in the world you will never fully know about. Thank you.

  5. Katherine says:

    Every single day I fear the cancer will come back and I won’t be here to calm my daughter’s fears or to get to know the child growing in my womb. It stops me in my tracks sometimes and makes it oh so hard to breathe, but it also pushes me on. It makes every second more important and more precious.

    You’re right. It isn’t about the fear of dying. It’s losing this incredible gift of motherhood for ourselves and for our children.

    Thoughts and Prayers

  6. Amelie says:

    Thank you for sharing this. It brought tears to my eyes. And I don’t even have children yet, so I probably don’t get how much you really love them. I hope with all my heart that you can stay with them for many years to come.

  7. Rebecca says:

    This is a beautiful love letter to your kids. Thank you for sharing.

  8. You are brave and wise, and you are right. No matter what, you will always be with those boys.

    Thank you for writing this, its beautiful, even though it does have me crying at my keyboard in the middle of the day.

    I hope that it will be a long, long time before you are with your boys in spirit only, and that you heal as well and as quickly as you can. I am praying every day for you and yours, and sending all the good thoughts I can out into the universe for you.

    Hugs and good thoughts.

  9. Judy says:

    Oh Susan.

    I hate this cancer that makes us so aware of losing what we have, our most precious loves. I hate it.

    I don’t know what else to say except that I’m here with you, and I care, and I’m praying, and I understand how the despair seeps into your life and you have to voice it and I’m glad you’ve voiced it — very eloquently, I might add.

    You’re a wonder. I hope and pray you have many more years here on earth with your loves. I’m sorry for your hurts and what you’re going through. It’s so very unfair, so unfair.

  10. I’m almost ashamed to say, Susan, that I mostly lurk here. For totally selfish reasons. My mom died of cancer four years ago and the pain is still fresh, so I lurk.

    But this? Was truly beautiful. I heard similar words from her mouth toward the end and I just want to reach out and take your pain away. But I can’t. So, instead, I’ll just tell you that I’m praying for you (the heathen prays! It is a miracle!) and your family. You deserve all the years and all the happy moments any of us will get. Probably more.

  11. Mrs. Chicken says:

    This is so beautiful and honest and full of clarity. Your bravery in the face of such a loss humbles me, Susan, especially in light of my own lightweight cares and worries.

    I hope you know that I often think of you and your boys, all of them. And I pray to the souls I know up in the clouds to keep you here with your family.

  12. Becky says:

    we think of you often, and pray for you always. You are brave – in body and in spirit. I, too, am not afraid of dying. I am afraid of being forgotten. You will live on in the hearts and minds of your sons. whether two years or fifty years from now, you will be remembered.

  13. Amy says:

    I think all mothers fear that they will die and have to leave their kids, and we’re all terrified of that. I know that when we were making our wills, and deciding on our primary and secondary guardian, I had a little meltdown. “I could die,” I cried, “and all they would have left of me is a blog!”

    Of course, your fear is more acute, more in your face, less dismiss-able, because of your illness, but the underlying sentiment is universal among parents.

    I can’t believe in a God who would separate us from our beloved children. I can’t believe that anyplace would be heaven if my spirit wouldn’t be with them. So I am comforted, knowing that being there in spirit as you describe is not only possible, it’s inevitable.

    I hope that in the quiet of the night you will hear the voice of the Infinite and know peace.

  14. Robin says:

    You are the bravest woman I know, and I KNOW that you will always find a way to take care of your beautiful babies.

    Much love,

  15. Barb says:

    Thank you for this gift. Thank you for sharing your life and joys and sorrows with me. You are strong and wonderful and wise and I learn from you. You are a beautiful soul.

  16. Brooks says:

    I’ll say it back: We’re afraid of losing you.

    I’m lighting my candles and saying my prayers.

  17. Stimey says:

    You have amazing courage and clarity, Susan. I hope with every fiber of my being that you have years to show them your love.

  18. juliepippert says:

    Do you know? I like to think of you and the future, like you getting a great program for working women in your field. Underneath it, though, is my end of exactly what you express here. I am afraid of you and your family being separated in any way, and of us losing you. I send up a little something every day that what will be for a good long while is the good times, all together. You are on my calendar for lunch in one year, sister. That’s how much faith I have in the good times rolling for a long while.

  19. This was perfection, WM… Perfection.

    It is the ultimate fear of all mothers, to be separated from their loves… and you have put your feelings into words so beautifully and courageously.

    But I absolutely and whole-heartedly agree with you… You WILL be with your children forever, no matter what. I remember the day that I asked my dad, the Stoic English Doctor, if he REALLY believed in God and an afterlife, with all of his high fallootin’ scientific knowledge. He responded by looking right into my eyes, and telling me that it would not be possible for him to do his job, without a belief in a greater power, and the indestructable strength of the human “spirit”. He told me that although our bodies might get sick and deteriorate, he believed that the “life force” within every one of us is just too incredible to simply be “snuffed out”. He said he felt it HAD to go on to something “greater”.

    He also said that he had seen too many miracles. Too many amazing, unexplainable things, NOT to believe.

    I must have been about seven or eight… but his words have always stayed with me.

    And today, you affirmed them for me again!!

    Love to you, as always.

    xo CGF

  20. E :) says:

    I think this is my favourite post of yours ever. You are so strong and I only hope that if ever the need arises, I will be as strong as you.

  21. Alison says:

    Your words are so brave and honest and so true. I have not been in your position but I understand what you mean. Locked in that alive but frozen state is too scary to consider.
    You are strong
    You are brave.
    You are amazing.
    You are alive.
    You are doing wonderful.
    Thank you for sharing your words with me, thank you for making me stay, I am so glad I did.

    (My kids say yum to tylenol, too! At first I was afraid that I had created little addicts!)

  22. Edna says:

    You are a wonderful Mommy and also a very gifted writer. Thank you for sharing these intimate thoughts with us. I pray you have many years on Earth with your children and know with your faith you will always be there with them no matter what.

  23. Stacyg says:

    “I cannot imagine ever letting go of such love, this baby-tickling, preschooler-teaching, both-ears-listening, all-encompassing mama love, and I will be with them always, in spirit if not always in body.”

    -So very beautiful. I didn’t cry until I got to this part. Just lovely and it says so much more than just the words.

  24. I would never click away, never no matter what found its way onto this screen from your heart.

    If Liam can take care of me from where he is, you can take care of yours from anywhere, as we all do when we go.

    I wasn’t sure of that before, but having held him as he passed and feeling that presence, I know now.


  25. Susan K says:

    Susan, Yes, I am tearing up… But you know what, I suspect that what you write is not unique to you and not even unique to women with serious illnesses. (note I did NOT say terminal – LIFE is terminal). It is shared, probably, by all mothers.

    I lost my mother before I got my PhD, before I married my husband, and long before my girls were born. I am sorry for what she missed and for what my girls will never know.

    So I, like you, do not fear death, which will come at some point. (though maybe I fear sudden death – not the death part, the sudden part – I never got to tell my mother goodbye). But I fear the apartness. I fear what I will miss. And I fear what my girls may miss sharing with me.

    I think all mothers, at some point, sometimes sooner, sometimes later, become their children’s angels.

  26. catnip35 says:

    That was truly beautiful and honest. You’ve touched more people than you can possibly know. This post perfectly articulates every mother’s worst fear, but most of us would not know how to say.

  27. carosgram says:

    God Bless

  28. NoRegrets says:

    It sucks when you are no longer so busy fighting physically that the mental fight begins (or expands?). Think forward. think positively.

  29. creativecrocheter says:

    I keep wanting to comment, only to find others have already said it better – to which I say “Amen!”

    As you clearly know already, love is eternal and knows no separation or loss, even when we are physically apart from those we love. Thank you for reminding me of this.

    It sounds like your fears have already served you well, driving you to examine your beliefs and showing you what is most important to you. Embracing the fears as old friends, invite them to sit beside you quietly – if nothing else, it saves the energy otherwise spent on fighting or fleeing from them!

    Peace be with you, for all your nighttime vigils.

  30. Tara-Lynn says:

    A beautiful post WhyMommy. Even though I have not the same battles as you, I do think about how would I ever face knowing that I had to leave my three loves….husband and two little sweeties.

    Thank you for sharing.

    Be healthy.

  31. tori says:

    You are so beautiful. I really appreciate you sharing this. I totally get this. Cancer really makes you think about everything in life (and beyond). Sometimes it is nice for me to read that other people have the same exact thoughts that I struggle to put into words. This is beautifully written and perfect. Exactly what I think about.

  32. momma knows says:

    This brought tears to my eyes, perfectly said.
    Thank you.

  33. diva65 says:

    You. Are. Amazing. Strong. Beautiful.

  34. Oh, Susan, such careful words to say something so difficult. I, too, fear separating from my beloved family and I cannot imagine how close you are to these thoughts. I admire your strength and serenity and honesty. My healing thoughts are with you. Crying, with you. And hopeful, with you.

  35. NYfriend says:

    WhyMommy, I wish I was able to find words to express my thoughts and feelings half as well as you do.

    I am confident that you will find a way to be a loving, creative mother no matter what state your body is in.

    As others have said, as a fellow mother, these thoughts have crossed my mind in the wee hours of the night too. The despair can be so drowning. But the other half of this equation also lifts me instantly in the morning as I see those little faces beaming at me, ready to explore another day. A strange fact of life, in order to feel love that is deeper than we ever imagined, we must also have the capacity to feel loss just as deep. So something to consider is to rejoice in the depth and power of love, and embrace love’s “other half’s” existence without immersing in it.

    You are a roller coaster person, not a merry-go-round person. And that is something that all your boys will feel the power of forever.

  36. Ally says:

    I love your conclusions, formed with a “physicist’s conscience and a presbyterian’s heart.” I firmly believe this, too. I don’t know what form we’ll take, but I know that we will not be separated (other than physically) from those we love.

    Hugs to you, sweet friend. Thank you for this honest and touching post.

  37. Oh gosh, and here you show up on my blog to offer sympathies for a birthday party gone awry.

    You are too kind. Thanks for reminding me about what’s really important.

    I can’t wait to see you at BlogHer!

  38. sara says:

    thank you

    i don’t know the place your speaking from, but i know my own very well and i feel your pain personally, love to you sweet mother – woman, somehow, it will all work out

    all my prayers and thoughts, thank you so much your changing the world

  39. D'Lyn says:

    I lost my Mom to the ravages of breast cancer, and the “train wreck” that followed, last summer. Being apart from her at times is pretty much unbearable.

    The other day my 5-year-old picked a dandelion. “You’re supposed to make a wish and then blow on it,” I said. “Will it come true?” she asked. “They say it will,” I replied. And in the teensiest of voices, she whispered, “I wish my Granny would come back alive.” And I cried.

    What my daughter wants more than anything in the world — more than a horse or a swimming pool or the latest gadget she’s seen on TV — is her Granny. And I can’t give it to her. And that makes it hurt all the more.

    But you know what? Her Granny is with Jesus. And that makes all the difference. As much as I want her here with me, and as much as I would love to see her with my kids again, I wouldn’t for one second want to take her away from that. And that’s what’s getting me through this temporary separation.

    Your strength touches so many. Thank you for touching my life.
    – d.

  40. jenn says:

    Honey, I think you just put into words what every mother fears. And as so many others said, I am full of admiration for your bravery. I hope that your boys are big grown-up men before you’re separated from them.

  41. canape says:

    Off my chest now –

    I am scared of losing you.

    I want you to be here a very very long time. I’m selfish that way I suppose.

  42. Ellicott City Mom says:

    I suffer massive panic attacks thinking about what would happen if I could not physically be part of my boys’ lives. I think of their pain and I cry. I am a firm believer in guardian angels and the like. I’m certain that in my times of trouble my deceased loved ones are right there with me. I feel them. I picture them. They bring me comfort and peace. Yet I cannot lose the fear I carry about leaving my own children behind. Perhaps this is human nature. I cannot believe how well this post resonates with me and yet I cannot draft a single intelligible sentence in comment. I cannot go without reminding you that you are making a difference in so many people’s lives, including mine – a total stranger to you. God bless.

  43. Angela says:

    You write so beautifully about this.

    I’ve been thinking about this very thing myself, usually at night when the house is quiet and I’ve already gone in to check to make sure my son is safely tucked in his crib, but sometimes during the day, while at work. It’s always when he’s not right there with me.

    I can’t explain it so well, for me I’m s still in the stage of utter terror thinking about something happening to me to take me away from him while he’s so young. I don’t have any idea what to do with this fear, but to know I’m not alone with it is heartening. I hope I can somehow regain my cool confidence.

    I’m not worried about me, not worried about what will happen to me after I die at all. Just worried about him. How in the world do we deal with this feeling?

  44. emmy says:

    so smart, so alive, so feeling. great writing, but more so great living. you’re living everything.

  45. De Anna says:

    So brave. So beautiful. So generous to share this with us.
    My thoughts are with you daily.

  46. Lisa says:

    Your honesty, and depth always blow me away. Thank you again for sharing from your heart and giving me things to think about. You are in my prayers.
    As a mother, I can feel your emotion for your children and your future. I want the best for you. You have given so much to so many… thank you.

  47. uurchin says:

    You so beautifully voiced every mother’s fear. My heart broke reading this post but you’re right. You’ll be here- regardless. Love is stronger than death.

    I rarely comment but wanted to tell you that I think of you often, this woman I have never met. Have put you and your family on numerous prayer lists and pray for you when I think of you.

  48. Linda Lawrence says:

    Love you! Thanks for sharing honestly.

  49. Redsy says:

    This is so beautiful and precious. Thank you for having the courage to share this with us. We will all hold our kids tighter today because of you.


  50. […] Read this beautiful thing and thank your lucky stars…Bookmark to: […]

  51. My heart is breaking for you to think you have to contemplate separation from your little ones, when I was lucky enough to raise my son to adulthood. Your determination to be there to watch over them – whether in physical form or in spirit – is wonderful and I will be praying for you and your sweet boys. Bless you.

  52. MamaGeek says:

    There is not one post of yours that goes by that does not move me in one way or another. Thank you for sharing this. Know you are wonderful. And loved. And thought of endlessly.

  53. tracey says:

    This was such a beautiful post. It truly touched me deeply… I hope your pain and discomfort eases quickly… Sending my love to you via the internet….

  54. Meredith says:

    Such a beautiful post. Stay strong. God Bless

  55. Bon says:

    never looking away. here, and honoured to be so.

    i lie in my bed for different reasons now, remembering that you did so for long months during your pregnancy with Bear, remembering that mine is still a gift, this separation, my current inability to lift my child, to play.

    and i second what Kate said…you’re right. beyond that curtain, which i hope you do not cross for a long, long time, the separation between mother & child is never complete. love is strong as death.

    and yet, a bed full of warm, sleeping loving bodies…better. i hope you found your peace the other night after you wrote this, and were able to rest. it is a beautiful, beautiful post.

  56. amy says:

    blessings to you
    and my prayers are here right now for you. I am turning this computer off and thinking about you
    right now…xo

  57. Dawn says:

    Thanks for this. I know it’s all about you, but in it I hope that it’s the same for my dad being with me in spirit.

  58. The world is a better place because of you. Anyone that is lucky enough to read the words you write is better off because of you. Your loved ones are special because of you. And WonderDaddy, Widget, and Little Bear are 3 very lucky loves to have you as their very own.

    My thoughts and prayers are never far from you and yours…as well as all the other men, women, and children whose lives have been forever altered because of cancer.

  59. MammaLoves says:

    There isn’t anything you could write here that I wouldn’t read.

    It never seems possible that you could be anymore incredible and then…

    You will never be away from their love no matter where your body may be.

    But I understand your fear.

    Love you Susan.

  60. Jessica says:

    Thank you.

    You are there, you ARE, you are loving with your whole self and you are loved by so many.

    This will be the G.D. summer of love baby!

  61. I don’t comment often, but this one just moved me to tears.

    You are amazing. What words, what strength.

  62. sweetmommy says:

    I stumbled upon your post today…
    You are an amazing woman, and you stranger, are now in my prayers…
    Love In Christ from Music City Tennessee

  63. ma says:

    I, for one, remain positive that you will be around for your kids. Best of luck from a stranger who hopes for the best.

  64. deb says:

    This made me cry. I can try and imagine what it’s like for you but imagining is not the same. I can stop imagining, put my thoughts away, get up and walk away, still whole. You’re stuck in it, in the middle of it, with no way to get out, except through it.

    I’m not what you would call a christian but I believe we all have souls and I believe we stay near those we love, especially our children. I can’t imagine even death being able to break that bond, that hold our children have on our hearts.

    Take care Susan.

  65. Imstell says:

    Susan – Thank you for trusting us enough to voice your innermost fears. A spirit as gifted and eloquent as yours could never disappear from the world.

    When you leave this world – in four years or forty – you will have left your boys a marvelous legacy. The ability to love that deeply and engage that fully is learned, my dear. And you are a wonderful teacher.

  66. amanda says:

    These words need to exist in the light, your whole story is what you share and what we are here for time and again. I won’t lie, this post makes me angry, you shouldn’t have to feel these things, you should be covered in dirt from the park and elbow deep in mama-dom. I am so sorry for the fear and the diminishment of physical freedom, but oh Susan, how your spirit does soar.

  67. JoC says:

    No desire to look away. Beautiful thoughtful post.

  68. Karen Lynch says:

    Written like a true mommy … I’ve three babies of my own and I’ve battled breast cancer twice already. My greatest fear, like yours, is being taken from my babies, not being a part of their lives … having them grow up without me.

    I ache for you, Susan. I’ll add you to my prayers specifically!

  69. Oh my… I glimpsed your blog once or twice, and this post really, really hits out at me. I lost my Mom when I was 9, and … well.. you know.

    Today on Julie’s blog I hear that you’re disease free – CONGRATULATIONS! You really, really deserve this second go at a renewed life.

  70. Carol says:

    I don’t have children – I am a widow of alcohol, and am addict myself.
    Where do I find help on a limited budget?

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