Finding Joy, however fleeting

This morning we went to the playground. Maggie loves to go to the playground, even though she cannot really join in on the activities. She loves to watch the kids running back and forth and listen to the squeals of the little kids. Today was even better because we went with a couple of other kids who would run and squeal and then come back to Maggie to see what she was sayingand interact with her. Maggie was in her glory.

We headed to what Eddie used to call "The Big Park," which is the children's playground in Golden Gate Park. It really is "The Big Park" compared to neighborhood playgrounds. It is huge. This park was redone about seven or eight years ago and it is even better than before. There are lots of those engineered soft surfaces instead of sand and Maggie's wheelchair can go to more places. (There is still sand in some places, just not as much). There are climbing sculptures like this one that we decided was a crashing wave. I used to think it was the spine of a buried dinosaur, but the wave makes more sense.

There is one adapted swing for disabled kids or for kids who are afraid of the regular swing, I guess. It's a seat with a back instead of a sling type seat. We asked Maggie if she wanted to try and she said yes, so we lifted her into the seat. At first she did not like it.Maggie  has little or no control of her trunk or head and really needs to be strapped in to stay upright. The seat had no straps and you could tell from Maggie's face that it was scaring her. We had to stop her from falling over several times, before we got her balanced.

Once we got her centered correctly and she knew there was a hand on her, she felt safer and actually started to enjoy herself.  It didn't last long, but it was worth it. We have learned to push through the hesitation and fear to get to the joy, even if it's fleeting.

Fleeting Joy is definitely better than no joy.

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.