“What can I do to help?”

We’ve been dealing with Shawn’s illness for 7 months now and there have been a few distinct periods in which the question “What can I do to help?” was front and center. It’s also equally true that Bill’s illness has spanned three years now, and has recently taken a turn for the worse. Bill has traveled a similar path to Shawn. Not diagnosed. Can’t control the symptoms. Emotional, financial, and physical upheaval in our lives. And right now, he can do even less than he could before. Physical pain is now preventing him from doing practical things like childcare and chores. And doing his job, his career that is currently supposed to be our primary income source while my income has been slashed because I am Shawn’s primary caregiver.

So the question – “What can I do to help?” It’s a great question! We feel so grateful that so many people want to help us. But it can be a burdensome question, too. What can you do? I don’t know. Do something, that would be great. What? I don’t really know. We need a lot of help. Despite not wanting to need a lot of help, we actually do need a lot of help. We will need even more help moving forward. But it usually hurts my head to try to come up with an answer to that question. It also is hard to answer questions about what the kids like to do and play with. Surprise us! It’s hard to answer questions about what we like to eat. It varies by the day and we love cooking, most days, and consider ourselves hobby foodies. Sometimes, though, we hate it and don’t have time and one or more of us is too sick to do anything and we eat cheese and crackers for dinner, with a sliced kiwi because we need to have a fruit or vegetable at every meal and kiwi is a cool foodie fruit.

Yesterday I stumbled on a blog written by another cancer parent that addresses the “What can I do?” question in a way that spoke to me intensely. It’s the words I’ve been trying to find, but there are just too many words for me to have managed to do it myself. I’ve read it several times. There are three segments of it:

What Not To Say When There Is Nothing To Say

What To Say When There Is Nothing To Say

How You Can Help When There Is Nothing To Say

If you’ve asked me the “What Can I Do?” question or if you’ve been wanting to ask me this question, please read these posts. Read all of them. Read them twice.

I’ll add a few specifics for our family:

• Include Lilly when you send something to Shawn. It doesn’t have to be 50/50 but Lilly feels left out, hurt, and angry about this whole thing. She has the same fears that the rest of us do about where this might be going and what it’s going to be like along the way, but practically speaking, Christmas Morning can’t be only about one kid. It has to be about all the kids. The whole family. And yesterday our house looked like Christmas Morning, our living room covered with donated toys, games, gadgets, and stuffed animals. Falling snow outside and all, despite being mid April in Pennsylvania. I present the stuff in a way that makes it clear that it’s for our family but when some things are specifically labelled for Lilly, it helps. A lot.

• Gift Cards. Very early on in this process, one of my running groups gathered a hodgepodge of gifts for us. Cookies, greeting cards, games, money, gift cards. One of the gift cards was for Starbucks. We tend to use the money to pay bills, a really really necessary thing in our lives right now and something the gives us a great deal of stress relief, for at least one more week or month. We can’t use a Starbucks gift card to pay our bills. So we have no choice but to use it to buy treats from Starbucks. There happens to be a Starbucks across the street from CHOP. One day, when I was sick of eating the same food at the hospital (despite CHOP food being generally AWESOME!) I walked over to Starbucks and got a cup of coffee and a bacon, egg, and Gouda sandwich. Almost $7 for both. Way more money that I should spend for a sandwich and coffee when I could buy something cheaper at the cafeteria or eat cereal and crackers and apple slices (must have a fruit or vegetable at every meal) for free from the pantry on the inpatient floor. But really yummy. Shawn does not like cooked cheese on anything but pizza and mac and cheese but he asked to try a bite of my sandwich. My very “adult” swanky Starbucks sandwich. Not just melted cheese, but melted Gouda cheese. Very foodie. Or maybe passe foodie, because it came from a chain restaurant. But really yummy. He loved it. I buy it for him sometimes when we’re at CHOP. There were a few times last winter when his way of telling me that he needed to go back to CHOP was to ask for that sandwich from Starbucks. We never would have discovered this if my running friend had not given me that gift card. And I never would have asked for it following the question “What do you need?”
  • Here are some local and national places we like and buy from, including some things that just keep me and Bill sane via food, drink, running, and cycling:
    • Toni Roni’s Pizza
    • Target
    • Giant Grocery Stores
    • Wegman’s
    • Starbucks
    • PA Wine and Spirits
    • Whole Foods
    • The Great American Pub
    • REI
    • Valley Forge Running Company
    • CHOP cafeteria meal vouchers
    • Wawa
    • Any large local gas station (Lukoil, Sunoco, Wawa)

• Household help. Bill’s illness has recently taken a turn for the worse in a way that makes lifting anything to shoulder level very difficult. This includes sponges and mops and vacuums to clean our house, mowing our lawn, and even lifting his bike up the stairs to go for a ride. With me being at CHOP more than 50% of the time, this means that our house doesn’t get cleaned much, our lawn won’t get mowed much, and Bill doesn’t get to ride his bike much. I don’t know what can be done for the bicycle riding, but we need help with cleaning our house and keeping up with our yard work. Bill has a really low tolerance for messy. Mine is slightly higher. The kids couldn’t care less. The title of this post, “Sometimes Our Lawn Just Gets Mowed” is from one of the things on a list in that other blog I mentioned above, and probably from the “anonymous” option. People probably just showed up and mowed their lawn sometimes. I read that to Bill and we just looked at each other and simultaneously said, “That would be great!”  The house cleaning thing is a little trickier. We value our privacy. We would never be comfortable with our friends or family cleaning our bathroom or scrubbing our floors and certainly not folding our underwear. But we have no objection to a professional cleaning service doing so.

And finally, what to say. What to say is hard. I have heard some annoying and stupid stuff, too. But I don’t want to call anyone out on it or make them feel bad because I’m confident that everything that has ever been said to me about all of this has been with the intention of helping. I’m sure that I’ve said some really stupid stuff to other people in other situations. I’ll say just this – I am an atheist. I was raised an atheist, although brought to various churches to get the exposure to religion, to learn about its place in society and culture, and allowed to go to church services and summer camps with friends as a child to hang out with my friends and decide for myself what I wanted to believe. Ultimately I decided that atheism is the only thing that makes sense. My parents got that one very right. So as a lifelong atheist I will say this: One of the single most helpful things that anyone ever says to me so far is that they are praying for Shawn and our family. Because what that means to me is that they are thinking about him in a very meaningful way in their lives, and they hope that everything will be ok. And we all hope that.