Tuesday, February 8, 2011

Trigger (un)happy

There was an interesting article in the San Francisco Chronicle yesterday. It involved parents of kids who battle (or have battled) cancer. The study found many parents exhibited signs of post traumatic stress. (You can read the article here.)  Though the study in the article was focused on parent of children with cancer, a lot if it felt very appropriate for me. I would put money on the applicability of those findings to any recurrent childhood illness or condition. It somehow felt validating to see an official study confirming what I, and so many other parents, already know.

There was some good advice for parents in that article, which was a list of "Coping Tips for parents." These also apply both in and outside of the world of oncology and are all things I practice and suggest others do as well. Because I thought they were so helpful, I am listing them here. Those tips included:
 - focus on today and not the future, and on what you can control versus what you cannot
-- recognize depression triggers; anniversaries of a diagnosis, your child's birthday or doctor appointments.
--when seeking support, differentiate between those who give it and those who drain your energy
--reach out to other parents who have a child with a similar diagnosis
--get involved in an advocacy group for your child's disease
--set up a website, with an organization such as Caring Bridge.com, to that you can control information about your child's health

Interestingly I was sitting in pre-op at UCSF waiting for Maggie's procedure to begin while I was reading this article. The pre-op and recovery rooms are places that especially trigger anxiety in me. We've been there well over 100 times for all the surgeries and other procedures Maggie has gone through. Experience does not make it easier, though. In pre-op we are waiting for the surgery to begin and all of the awful possibilities dance through your head. In the recovery room, the relief that the procedure is over is palpable, but seeing your child in pain or experiencing the fear and pain in the other children is very difficult.

Yesterday things went as well as possible. They took Maggie into the procedure early and she recovered easily and without any pain. There was nothing remarkable found. We will undoubtedly have to do it again in a month or two. Hopefully it will go just as smoothly,

But I already know it won't be any easier. No matter how many times you experience it, the fear is there.

My only suggestion is that they find another term. It's not really POST traumatic stress when you have a child with chronic issues. It's never over, so it's just ongoing traumatic stress.

I think I'll go take a hot bath.


  1. I am glad to hear that this visit/procedure is over and done with and that it went well.

    As far as the article goes, I'd add that our stress is certainly not POST, and that the constant release of stress hormones -- cortisol -- is particularly damaging. I advocate some sort of relaxation practice, whether that be yoga or meditation, particularly mindfulness meditation.

    Thanks, Sally, for a great post and hugs to Maggie from Sophie!

  2. OTSD, absolutely. On-going traumatic stress disorder. It takes a serious toll, and isn't looked at with enough attention. Caregivers to aging spouses or parents, returning war veterans, parents whose child have a terrible illness----all these are taken differently, somehow, and in fact they ARE different, from the level of ongoing, extraordinary mothering that some of us are called upon to do from the time our children are infants.

  3. Glad to hear it went ok. I missed that article but will look for it and I agree completely. I've been to a couple of PWS conferences where researchers/MDs have presented findings on the effects of stress on the parents and it always makes me feel better to know they know. It helps me acknowledge it myself, to know that it's not that I am just not coping well.

  4. Glad everything went well with Maggy. I think the P should be replaced with an M in Post Traumatic Stress= Most Traumatic Stress when caring for our medically fragile children. Thank you for sharing your insights. I posted your piece on Sharing Wisdom. http://www.sharingwisdom.us/sally-mcdonald/


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