#greyallmay

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It is Random Acts of Kindness week, which is the kind of thing that keeps my kids at the forefront of my mind. All of them have a deep appreciation for the truly random, and they have made me have an appreciation for it as well. As cool as random surprises can be, they don’t usually have an impact that lasts beyond the moment or the day. Making a big impact takes planning… which got me thinking.

May is Brain Cancer Awareness Month, and we have been pretty vocal about that in year’s past. There hasn’t been much of an impact, though, despite our efforts. I think a big part of that is the lack of a large, concentrated effort. We are all out there doing our own little things, but without an umbrella covering it all and pulling us all closer together. I’d like to change that this year.

Before I tell you how I think we can change it, let me explain why I think it is important to change it:

1. Brain cancer patients frequently can’t advocate for themselves. Why? Well, first of all, the disease is attacking their brains. That means that communication skills can be affected, but beyond just speaking, it can make them more irritated with social situations. Too much stimulation (in the form of conversation or even background noise) can be overwhelming and frustrating. Secondly, if they are not affected by these issues, they don’t want people to assume that they are… so they may try to hide the fact that they are fighting the disease. Some people, like my son, for example, spend much of their time with few visible symptoms and in the fortunate cases, even few non-visible symptoms. They can go on with their lives… but that doesn’t mean the disease isn’t there. It doesn’t mean that their lifespans aren’t being exponentially shortened. This is an insidious disease, and it  may lurk or leave without signs that a casual observer could ascertain. The disease may be defeated, or it may take their life, frequently without friends knowing that they were “that sick”.

2. As clever as it is to use grey as the awareness color for a disease affecting our “grey matter”, the color grey is as “blah” as you can get. Think about it. If an NFL team decides to wear pink for breast cancer awareness, they have immediately gotten everyone’s attention. Pink is bright. It is unusual for a man to wear. But grey? Everyone wears grey. It’s the “new black”. It’s plain, and dare I say it, a little boring. If we got every major league baseball team to wear grey in May, you may not even notice. Half of them already have grey uniforms! It’s not outstanding in any way.

3. There is no marketing firm working on brain cancer awareness month. Breast cancer has some pretty heavy hitters who are willing to spend large portions of their budget on marketing and public relations to influence companies to help them make an impact. Brain cancer charities spend their budgets on research. Frankly, I’m pretty happy that they do, but if we want their money going to research, we need to help them out with the marketing.

So here’s what I propose:

1. I think we should ALL use #greyallmay for all of the events that we do. Whatever brain cancer organization you are raising money for, tag #greyallmay. We can build some sort of basic webpage to rally everyone and explain why this is an issue. We can list links to the various organizations that are making a difference in brain cancer research. We can post pictures of people going “greyallmay” to build the hype.
2. The rally cry should be for everyone to wear grey every day in May. Is that a commitment? You bet it is. But I figure if Johnny Cash can wear black every day of his life, we can all commit to one month a year.

Who’s Grief Is Worst?

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I have a very compassionate friend who lost a daughter at a young age. He has a family at his church that is struggling with the death of their daughter who was a young adult. He wants so badly to help them with their grief and he reached out to me to see if things are somehow different when you lose an older child. He is trying so hard to put himself in their shoes so he can try to help them through this. I was so touched by his thoughtfulness, and I thought long and hard about how to answer him. Below is my response:

“I can’t really say if it is different to lose a child at a younger or older age… my educated guess is that it doesn’t matter to the person grieving. It makes me very sad when I think of David’s dreams and what he wanted to accomplish. He had so much to offer the world and brought such joy to others. Sometimes I think it is particularly hard to have lost him on the cusp of adulthood, but I have family who have lost babies and adult children, and I think it is just plain horrible no matter what.

I don’t feel particularly qualified to offer advice, but since you asked, I’ll tell you what I’ve done to try to cope with every parent’s worst nightmare.

1. I gave myself permission to be mad at God sometimes. I know He is wiser than me, and that He will see me through every situation. But I’m still His kid, and kids can be mad at their parents sometimes. It’s ok. But I still have to maintain a relationship with him no matter what.

2. I gave myself permission to be snarky sometimes. I try to keep it “private”, but I vent to 2-3 moms that who’s children have died or who were particularly close to David. They don’t hold it against me when I say stuff that I only mean for the moment.

3. I don’t even try to ask “why”. It’s futile. There is no answer that could ever be good enough, and it would just drive me crazy if I tried to figure it out. There is no reason. Sometimes life just sucks. But David never let the sucky things get him down, so I’m doing my best to live by his example.

4. I give myself permission to grieve – but I set time limits. Sometimes it’s an hour, sometimes it’s a day. Whatever the time period, it’s ok to cry, be mad, be sad… just let those feelings take over. And then put them aside. If I take a day to be sad, the next day I must go out into the real world and act like a normal person. I know that I’m a person missing a chunk of myself, but the world doesn’t need to know that. “Fake it ’til you make it” is a popular expression for a reason.

5. I try to do something daily that makes a difference to other people. I do advocacy work. I mail birthday cards to friends who would never expect to get one from me. I send care packages to David’s friends who are freshmen in college this year. Those little things help me feel a little better about the world.

I have a friend who participates in a “Grieving Mothers” group on Facebook. I’m part of the group, but I don’t feel it really helps me much. It’s like watching a sad movie. Life is sad enough. I don’t need to look for ways to be more sad. I actively seek out ways to be happier. I know David would have wanted that, and I really feel bad about myself when I don’t try to honor his memory. Most days, just thinking about the gift of life I have been given is enough to make me at least somewhat productive.

It’s hard to figure out what to do to make things seem “normal” again when the fact is, it will never be normal again. But no one’s world should revolve around a single person. And there is almost always someone else who really needs you to get through the grief. ”

I know there  are a few people who read the blog that have lost loved ones. If you have any coping techniques to share, I’m sure it would be helpful to everyone.

Busy

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Busy means a lot of different things to different people. Lately, “busy” for me means being fairly constantly active with work and home projects. Depending on the day, I will gravitate toward thinking or non-thinking projects, but there are so many things to do it hardly seems to matter what I pick.

Through all the activity, I miss my kids. David’s birthday came and went and we all survived it. Austin wrote about it quite eloquently on Facebook. Kinsley honored his memory by preparing and ultimately delivering gifts to the pediatric unit at our local hospital. I ordered some “birthday cookies” and we shared them with the Spotless Mind kids. Nothing major, but I think he would have approved of it all.

On top of getting our home and company back on track, we are undertaking a fairly large project. We are going to have a concert in May to raise money for brain cancer research. David died in May, so it has special significance for us. The really special thing about it is that a lot of our friends from the Apple community are also planning to have concerts. I’ll post more details as we get them, but I am so honored that David has inspired so many people to become active for brain cancer research.