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.

Dr. Mom

Maggie is sick. At 8:00 AM I called the doctor to report symptoms of Maggie's and thought she had pneumonia. she was doing all right and I sent her to school, but something was "off". I had to go get her because the school nurse had to keep giving her oxygen. She wasn't terribly ill, but this is not normal.

I called urgent care and waited 30 minuted for someone to answer the phone (do they understand the definition of "URGENT?")  They gave me an appointment and then called back and instructed me to go straight to the ER. I silently groaned. Maggie wasn't really sick enough for the ER, it would take longer and we would be taking up apace that someone else could use. On the way up there my call to the pulmonology nurse was returned. I told her we were on our way. 

While we were in there Maggie kept telling me on her talker that she wanted to go home. her sentence was"Mom, I want to go in car. Home" I said Sorry, Mag, we have to wait. Finally the resident came in. He was a handsome young guy who was very sweet to Maggie. He ordered a chest xray and left the room quickly grabbing Maggie's hand to say good bye.

Maggie paused, cleared her talker and made the following sentence, "Mom, I am sick".

I laughed at her and said, you just want to hang out with the cute doctor, don't you. she signed "yes" and laughed so hard she started coughing like crazy.

After 3 hours, they decided Maggie does indeed have pneumonia.  I ran into someone in the elevator back to the car and told him the story. He said, Dr. Mom is always right. As I left the elevator full of doctors I said, "My life would be so much easier if they would just give me a license."

I'm off to the pharmacy to get two more prescriptions.

_________________
in other news (literally) I was contacted by a reporter named Rob Reuteman recently. He was doing a story on the financial implications of raising a seriously ill child. Maggie and I became the example family. For someone who never met Maggie, he really managed to "get" her and the situation. Check out the article here http://www.foxbusiness.com/personal-finance/2011/01/10/newborn-unexpectedly-unwell/

A life Beyond Reason

I read this today and want to share it with everyone. It is an essay entitled "A Life Beyond Reason"  by  Chris Gabbard, the father of August, a severely disabled 10 year old boy. I don't know the author personally, but I did know his wife when they lived in San Francisco when August was a baby.  It's long, but very thoughtful. It's so nice to see something from the dad's perspective.

http://chronicle.com/article/A-Life-Beyond-Reason/125242/