How Do You Parent Through Cancer?

Hubby, Miss M, and I at the Hope Lodge in NYC for our first visit together – 1 week post surgery.
Photo credit: Eryka Peskin

Miss M is a hot mess these days.  She is angry.  She is acting out.  She is fussier than I’ve ever seen her.  She is yelling & screaming.  She is throwing things.  She is glued to my side.  She is constantly crying.  She is going through a lot.

Hubby and I naturally assume the acting out is related to my absence while I was getting surgery (we were apart for almost 10 days – I know, it doesn’t seem like much – but when you’re a stay-at-home-mom who is with your kid 24/7 even a few days can seem like forever).  She knows I was at the doctor while I was away from her.  She knows that I have some serious “boo boos”.

The few times she’s been able to articulate why she’s so mad she’s said, “Because mommy goes to the doctor a lot”.  It just breaks my heart.

And we really don’t know what to do.  I know I’m not supposed to burden her with my problems.  My illness.  My pain.  But even if I don’t talk about it she knows.  She senses what I’m going through.  She sees that I’m not the same person I was a month ago.  Miss M and I have spent practically every moment together since she was a baby.  Our connection runs deep.  And there is no way I can pretend that everything is normal – because it’s not.

The evening of our first reunion post-surgery ended with her in hysterics when she found out I wasn’t staying with them at cousin J’s that night.  The next day, she demanded that I sit beside her for the entire 10 hour drive back to Ohio.  And since we got back, she’s been glued to my side – looking for extra hugs, asking me to hold her, wanting lots of cuddle time.  She’s been fussy with her friends.  Each time I tell her I can’t do something I used to (like picking her up or holding her tight to my chest) she freaks out, starts crying, and runs away to hide.  Tonight she refused to sleep in her bed and demanded to sleep in our room (something she hasn’t done in ages).

What’s a mom to do??  If I give in to her every demand, am I spoiling her?  But with everything that she’s been through doesn’t she deserve a little spoiling?  A little extra attention?  A little extra love?

We are actively looking for a good child psychologist in the Dayton area that she can go to for play therapy.  Hubby and I – and even my dad (who is staying with us to help during my recovery) – are all at a loss for what to do.  Last time I put the word out on my blog about seeking a good therapist for myself you guys came through with some great recommendations.  If anyone has thoughts on how, or who, can help Miss M please let me know.

And I would love to hear from other moms who parented young children while fighting a chronic illness.  How did you make it through?  What helped?  How are your kids now?

In the end, I know we’ll make it through this somehow.  It just seems like a never ending journey sometimes.  I’m so sick of cancer taking away my ability to be the fully engaged, energetic, & active mom I used to be.  We keep telling Miss M that mommy’s gonna get better soon.  But really, when will that be?  It feels like every time I’m done one piece of the treatment puzzle, there’s another piece right behind waiting to fuck with my life.  I’m so sick of it already!!!!

I think I need to go eat a cookie.  :-)

Tomorrow is another day.  Peace.  – T

22 Responses

  1. I do not claim to be an expert about child psychology, but I do have some experience being the child of a parent who was chronically ill. My very painful recollection is that the most important reassurance I did *not* receive was that it wasn’t my fault. In fact, my grandmother set me up to take the fall when she told me that “if [I] wasn’t good, daddy would have to go back to the hospital.” And sure enough, he did. The impact on my life was profound, but it was easily preventable…if only someone had said the words.

    Until you find a professional to guide you, the best course is probably to follow your heart. Not only is she scared, but she can sense that everyone around her is scared too, so the more love and attention she receives, the safer she will feel.

    (You might also remind yourself from time to time that it’s not your fault either.)

  2. Oh my love…
    Step one is already done-asking for help. And I know the universe will provide a fantastic therapist for your girl.

    Now, speaking as a therapist, who also happens to love you and your daughter from the depth of my soul- yes she needs extra tender loving care. And she is receiving oodles of it from you, hubby and grandpa. And if that means sleeping in your bed tonight, so be it.

    At the same time, she also needs structure, consistency and a holding environment. I know it’s painfully hard. But in the end, life is hard and we must teach our children they ARE capable of living and loving through it. And we do that by believing in their ability to cope with the worst. And lovingly showing them how to do it. And she has coped and she will continue to cope. Some days with a smile, and some days with anger and fear. Just like her mother…

    No, things aren’t “normal” as you put it. But in reality, this is your new normal. There is no changing that. So honor that out loud to her- I know it’s hard. It’s ok to be mad. Mamai is going to wait here until you are done being mad. And when you are done, I’ll be here, ready to play with you. Because Mamai loves you more than anything. I always have and I always will…

    You can do it. You are doing it. And you will continue to do it. One day at a time.

    You are an incredibly amazing mother- just as your own mother was to you…

    Believe in yourself. I surely do.

    Love, Auntie Laurie

  3. YES, what Laurie and Rhonda said.

    Also…I don’t see Miss M making “demands”–I see her seeking love and reassurance from her mother, which is a beautiful and totally understandable thing. So from that perspective, it seems completely acceptable to me for you all to do what she’s asking for…within the bounds of whatever structure you want to create for her, AND within the bounds of what you can handle, physically and energy-wise.

    I also want to say–Miss M is a fantastic kid. She’s also a normal kid. ANY kid would be freaked out about this, and quite frankly it relieves me that she’s acting out! (Maybe not you, because you have to deal with it… :) ) But considering everything that’s happened, all of the changes in her life, this strikes me as reassuringly normal.

    But I do want to say that her fantastic-kid-ness is a direct result of how wonderful you and hubby are–in terms of her personality (the majority of which she inherited from the two of you), and because of your parenting.

    So kindly trust that you’re doing the best that you can, in a f**king hard situation. And really, if we weren’t all adults, wouldn’t we constantly be throwing temper tantrums too?

    I’ll check in with my network here to see if there are any resources they’re aware of.

    Sending love and light…
    xoxo
    Eryka

  4. T, I’m not a therapist, but I am a dad…Spend every waking moment with Miss M. She’s fighting cancer too, but from a child’s perspective…in the grand scheme of things, every moment with her is quality time…don’t think of it as anything else.

  5. When my son was young, I remember one of the specalists involved in our lives (he has autism) saying to me that there is always a reason behind behaviour. In this case, I think you’ve identified what it is – Momma is sick, and Miss M doesn’t have the grown up words to express how she’s feeling, so she’s doing what makes the most sense to Miss M – stick close to Momma. Perhaps in her world, life is “good” when Mom doesn’t leave.

    Trust in your bond with Miss M. Trust in your ability as a strong, loving mother. You will know if she is trying to “milk the situation” beyond reassurance. Don’t try to stuff your feelings down – let her know (within reason) what you’re feeling – anger, frustration, scared, sad.

    I don’t know. There’s no right/wrong way to parent. What I firmly believe in is that as a parent, you do the best you can with what you have on any given day.

    But I’m not a therapist. I don’t even play one on TV. I’m just writing as a parent (who has not suffered from a chronic illness, but having a child who required intensive therapies when he was Miss M’s age), and as someone who is cheering your family on.

  6. I wish you both and your daughter better days ahead. It is painful for everyone in you family (including Spider) and I surely understand how this must tear at your hearts. Your daughter will overcome her fears and see through the power of your love and example that she can cope with changes she cannot control. I wish you all the best even though you don’t know me personally. Hope all your future news is good news!

  7. Try to stay calm, yet be assertive. I have become an avid fan of the dog whisperer, and as goofy as it may sound, he often has many words of wisdom, that relate to humans as well as animals. Talking to Miss M in a calm voice, which you always seem to do, is wonderful. Being firm and setting limits is much harder. With you and Heron working together, with a little time and structure, Miss M will settle back into her routine. Much love and prayers, Auntie Maria

  8. I don’t have any kids so really don’t have any good advice. What I’ve read here seems to be excellent. All I can say is that you are an awesome mom. Just wanting the best for your daughter’s well being and looking for help for her when you are going through your own difficult times shows that.

  9. Terri, you and Hubby are doing a tremendous job and are an inspiration to so many : )

    I can’t help but agree with Gary’s comments and take it one step further…not just “spend every waking moment,” but the afternoon naps and the late night slumber too.

    Miss M needs your love and devotion so much right now but remember, the love you give to her, she will give right back ten-fold and I think that will help everyone heal!

    For what it’s worth, my wonderfully insightful Dad used to say, “When they are the most unlovable is when they need the most love.” I never understood this until I had kids…

    Just a few thoughts from a complete stranger (friend of Stevie’s) and mother of three, who sends you and your beautiful family the very best wishes for continued health and happiness.

  10. (((hugs))) Not cancer, but I do have MS and I would take my daughter to treatments and appointments with me as much as I could. She got used to the needles and long IV treatments and the driving. We would tote toys and games and snacks then look for nearby parks and play areas. We kept each other entertained. She’s a happy, sassy kindergartner now.

    Don’t worry about spoiling, hold Ms. M through her anger if she’ll let you. Let her know that you are angry too, but not at her. Draw pictures and play “doctor”. Just keep talking an loving her and holding her.

  11. I’m not a parent, but the best advice I’ve ever heard for children in situations like this is to make things as normal and as stable as possible. You want to show that you love her in all the ways you can, but you also need to set reasonable boundaries. So, she still has to put her toys away, and all those other rules that are normal parts of being a child, and she still faces consequences if she doesn’t do what she’s supposed to do. If she’s put in timeout for not putting toys away, that won’t be pleasant, but it’s also normalizing – this is What Happens when toys aren’t put away. Adding some structure (even if it’s meaningless, as long as it’s not causing stress) might help in that. And spoiling – I remember someone drawing a distinction I like. It’s okay to spoil with affection (hugs, play time, her favorite nutritious foods with supper) but not with treats (presents, special desserts, and the like). That is again pushing normal

    If there are any age-appropriate books for her, they might help, too – young children don’t have enough breadth of experience so they don’t know what’s going on, but if you give them enough information (in the form of a story) they won’t feel quite so confused.

    Of course, the bad news is that there aren’t any easy answers. This is going to be a confusing and sometimes painful time for her. You can’t prevent everything. Remember that, and remember that children can handle a lot of stress as long as they have a good foundation of love and comfort.

  12. Hey Terri,
    There are seldom easy answers in a truly spiritual journey…there is however the potential for magical transformation :))
    A friend who is a counsellor recommends the Neufeld parenting material (you may already be familiar). It really helped her get her kids through her divorce in a very empathetic and supportive way (despite bad behaviour).
    In her words: “the Neufeld parenting material is the best I know – it normalizes so much I what society labels as “bad behavior” and offers great tools for deepening roots of attachment which is what needs to happen to soothe the separation anxiety that happens”
    She had great support from a counselor in N. Vancouver too: “I worked w/ a Neufeld parenting consultant here who does phone consults – her name is Colleen Drobot and she is fabulously practical.”
    Here’s her website: http://drobotcounselling.com/wp/

    Hope this proves useful.

    BIG hugs from us…(please deliver a special one from O to M too :)
    LM~

  13. My challenges were psychological rather than physical, but my kids knew things were weird and since it was all temporary (for some definitions of the word) I did give them all the hugs and attachment and such they asked for. It’s reassurance they need. And I also explained what was appropriate and why I was acting differently, because although they were little they deserved to know it wasn’t about them. I can see a scenario where Miss M thinks it’s something she did and you don’t want her any more which is why you won’t carry her and why you keep deserting her. Yes, we know it’s not true and that it’s heartbreaking, but abandonment issues settle deep. Death is easier to deal with because she will know she’s not to blame for that. Kids internalize like mad, I’m afraid. I’d explain fully and she’ll ask questions or not. That’s what I think Jake would have done. (Your dad’s books helped me a lot.)

  14. Terri,

    I am a mother (now grandmother of 4!) and I went through 12 years of fighting cancer, 7 years of it after becoming a mom. My youngest daughter – K is now 35 and I showed her this post and explained your blog. We then talked about her memories and feelings about my cancer battle. We share this in the hope that it may help.

    K was 6 the last time “mommy went to the hospital again” and my cancer was a part of their lives as long as she can remember before then. The only MAJOR upset / hysterics was months after the last surgery while we were all watching a kids movie together and the mother in it died of cancer. Immediately K turned to me and started yelling at me “You NEVER told me that you could DIE from cancer!” That was when I realized that I had been factual and open with both my daughters BUT – I had never, ever told them (or even hinted) that it could be life threatening. K and her older sister were deeply hurt and angry for months after they realized that I could have died and had NOT told them of that possibility.

    I am now aware that I was unable to deal with MY feelings about the possibility of dying / leaving my children and because of that, I was completely unable to tell them. Assuming that I thought that they were old enough at 6 and 7, which I didn’t at all!

    So how does a parent do it “right”? I don’t think that there is a 100% “right” OR “wrong” way when to parent when also dealing with cancer. I feel that you have to follow your heart AND use your head. Love, cuddle, and reassure Miss M as much as she needs while still maintaining your usual rules and boundaries. Children need the comfort and safety that structure and normalcy brings, but especially when a parent is ill.

    Both of my children are now adults and mothers themselves and their only really BAD memory of that time was when they found out that I could have died. Based on their feedback, I think that you need to find out what “experts” recommend regarding how / when to discuss your cancer / treatments / feelings and her very normal reactions to these changes in her life. The BIG question is also IF / WHEN / HOW to explain what death is and the possibility of any parent dying to any child.

    I personally think that you are doing a great job as a parent and hope that you have the chance to be a grandmother also!

    Hugs, many, many hugs,
    E

  15. I had a bad day yesterday and didn’t even look at my email, so this came as a heartbreaking shock today. But my second thought was: Terri’s family, friends and blog followers are extraordinary and they will come through – better than I could. And it is *true!* A big ‘thank you’ to all above; you are wise, loving, experienced in so many ways and helpful, as always, and I agree with all you say! <3

    Miss M's reactions are all healthy, even though devastating. She does and says what any of us would, honestly and openly. You can be proud of that, believe me! I was an abused child, who learned not to cry (even when beaten), show any emotion, or volunteer anything, by the age of four. If she doesn't have the skills yet to deal with it in better ways, well… she's a tot yet. And with you as a parent, she *will.*

    I'm not a parent, but this issue tears my heart. I wish you a safe, private place to do your own crying, screaming and throwing your own tantrums! And then, may Heron's, Miss M's, your dear and devoted family's, and all your myriad friends' (me included at the end of the list), love wrap you in comfort and warmth. <3

  16. Love your child, your husband, your Self — in whatever order is most needed at the moment. Don’t buy guilt, it’s too expen$ive. She’s being a toddler — then add on a beautiful, brilliant toddler (oh boy — ask your Dad if he remembers you at that stage) dealing with heavy things. Hug her when you can, rest when you must, always love her and say so, and as someone above said — remind her it’s ok to hate the illness, you do too, but it’s nobody’s fault and we love each other a bunch. Now what kind of fun thing can we do next?

    Cancer sucks. There will be time enough for therapy later. Enjoy your family now!! All the best — Dana

  17. Hey Terry!
    So sorry to hear about Miss M’s drama, but this seems very normal to me! I have found that being open and honest about every aspect of my cancer has been very helpful for my kids. We don’t hide anything from them, including my surgery scars. I have turned to children’s literature for EVERY unusual situation our family has faced throughout the years. Whether it be moving, going to the dentist/doctor, loss of pet, cancer, friends moving away, etc. It just seems to be very therapeutic and kids can relate to story lines within children’s literature. Miss M is entitled to be angry right now, and the book that comes to my mind is “When Sophie Gets Angry” by Molly Bang. It’s ok to show her some extra love and attention, but at the same time she still needs her regular boundaries and structure.

  18. For whatever my 2 cents are worth as a stranger to you—be as honest with your child about what is going on and why. I agree with Trisha completely. I went through this with my first wife and our sons, and telling them the truth about everything was always better in the long run. Otherwise their minds cook up all kinds of scary scenarios that are often worse than the reality. My very, very best wishes to you and your family.

  19. Looking from my distant and limited vantage point, it nonetheless seems obvious to me that she’s scared — you’ve been with her (with the emphasis an eight-year-old girl I once knew — or Lazarus Long’s cloned daughter/sister twins — would put on it) all her life! and the concept of losing you is more than she can handle.

    When I was a teen I knew a younger boy who one day stopped going to school meals. He took punishments for disobedience but stubbornly refused to go. Finally they got him to explain why: since another teacher had suddenly died, and died at home alone, he was afraid the same would happen to his teacher and he didn’t want her to be alone while he was at school, with nobody to call for help for her. He was scared and trying to protect someone he loved in the only way he knew how.

    Eventually, with counseling, he was assured that there were other people at school who would be with her during his meals, and that she wouldn’t die alone during a school day. It took a while, but he was able to eventually cope and things returned to normal.

    The frustration of knowing something is dreadfully wrong with someone you love and that you lack the “grown-up-ness” to affect events is one of the greatest childhood traumas which I’ve seen. If the child never has the reassurance that it’s okay for her or him to be able to help only on a children’s level, some people can lose their ability to deal with death and remain unable to cope even as adults. I know you love your daughter so please try your best not to be frustrated with her. Even as you give yourself the personal care you need, you and your husband can talk with her about what is happening at a level a three-year old can understand. A children’s counselor can be invaluable here.

    She loves you, of that there’s no doubt, and — again from my distant and limited vantage point — wants to protect you as she understands it, as well as needing reassurance that you won’t disappear. Eventually, as you recover and your need to be away is reduced, her behavior, especially with help, will return to normal.

    You don’t know me, but I’ve known of you since your birth as I am a fan of your mother and father. Maybe we won’t get to see you dance in 1/6th g as was mentioned in The Cat Who Walks Through Walls, but you will have a life which changes the world in ways nobody can yet conceive. You are loved.

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