LIVESTRONG BLOG

Advice from Owain’s Dad

Jul 08, 2010 by Brooke McMillan

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We recently interviewed a dynamic kid named Owain Weinert, a 9 year old in the midst of fighting leukemia. Owain and his family participated in this year’s Seattle LIVESTRONG Challenge. After interviewing Owain we talked to his parents about what it is like to have a child in treatment and what advice they can offer other parents facing this battle. Owain’s dad Alex offered his insight.

What are three pieces of advice that you can offer other parents?

ACCEPT THE NEW NORMAL:
For us, it was really important to stop and say, ?ok, this is the new normal.? This IS happening, this IS who we are, this IS what we do. The plans, expectations, and modalities we had yesterday don?t matter. There?s a new normal, and we have to figure out how best to function in that new normal. It is ok to not know what you want, or what others can do at this point. It is ok to set and enforce boundaries. Some friends will want to cry on your shoulder, talk about how unfair it is ? your job isn?t to comfort them; it is to get your family functioning in the new normal. This is HARD; so if you have trustworthy folks that can run the little stuff (house care, organize your volunteers, bring meals) let them.

SET AN EXAMPLE:
Your kid looks to not just for care but for role modeling. So it is important that, if you want them to accept their emotions, you accept and show your own (appropriately); that if you want them to have an optimistic outlook, you show one yourself; if you believe this is a thing you will get through, that you show them that the future (and therefore schoolwork, diet, good manners, etc.) still matter.

TAKE CARE OF THE SYSTEM:
It is SO important to remember that you can?t take care of your child if you aren?t taking care of their support structure ? and that includes you! You need to eat, sleep, exercise, rant, take care of other children, etc. Make sure you find ways to take care of your partner too ? again, the whole support SYSTEM has to be working. Get help if you need it. For us, the dates are essential to talk honestly about our feelings, recharge, remember who we are as a couple and a caregiving team.

THINK OF OTHERS:
I am grabbing a fourth because it is so important. It is so easy to get sucked into the tragedy and toughness of the situation. Find ways to reach out and help others. We bring cookies to the nurses, we did LIVESTRONG, we brought cupcakes to the dads at the Children?s oncology ward after the ride. We do this selfishly ? thinking about helping others lifts us out of the toughness of the situation, and makes us feel less helpless in the face of the challenges.

What is the best piece of advice you received from another parent?
Someone suggested that I set up a blog right away. I thought this was weird at the time, but it has been a huge help. Being able to communicate once, efficiently, to anyone who cares, has been a huge time and emotion saver. We use the blog as a record ? emotional, medical, events, whatever. We used it to raise funds for the LIVESTRONG ride. We use it to ask for help when we need it. Owain?s is at