On our trip to Minnesota a few weeks ago, I had about 30 hours of travel time. I found a really great article in the September 2010 issue of Parents magazine. I'm hoping it gets posted online at some point because I'd love to send copies to some of my friends. Of course, first I have to figure out where I put the first page of the article with the title on it! (I like to rip out the articles and recipes to file away and recycle the rest of the magazine).
At any rate, the topic of this article was about raising kids when you have a chronic illness. It's really well done, covering some of the challenges of having a condition that makes an already exhausting job even more difficult, as well as encouragement for making the most of the energy and abilities you have.
The part that I really appreciated was the sidebar, "How to Help a Sick Mom Friend." I feel like, after six years, I've come to peace with my new normal, even as every age of Daniel's life bring about a new level of acceptance. But where I struggle is finding my place with other moms, and balancing Daniel's need to be social (i.e. playdates) and the challenges I face not knowing how I'll feel day to day. This is what the author of the article says...
HOW TO HELP A SICK MOM FRIENDTrying to be there for another parent can feel awkward. Some ways to make your offer of assistance easy to accept, from Dr. Elvira Aletta:Let her know how simple it is for you to help. Say something like, "I'm going to the store. What can I get for you? or "I made too much for dinner. I'm bringing over some lasagna."Keep asking. On average, chronically ill people have four days a month when they can't function normally. So the more you ask, the more likely your offer will fall on a day when even a fiercely independent friend needs a hand.Come up with a recurring plan. Enlist three or four friends to make a hot entrée, say, every Wednesday, or offer to incorporate caring for her kids into your schedule, like taking them on Saturday trips to the playground. That way, she knows we can count on some downtime.Just stop by. I was in the area and felt like walking your dog" or "Can the kids join us for some ice cream?" have a spur-of-the-moment appeal.Phrase your offer as a specific suggestion. "My boys could use some company. how about I pick up your kids at noon for a playdate?"
I really like these suggestions, not only for the content, but the way they are presented. No one wants to feel like a mooch, and I think living with a chronic condition really brings up insecurities about our ability to parent. That's part of the reason it's hard to ask for help. When someone asks to help in a way that makes it sound like we're doing them a favor (helping them get rid of extra dinner, like in the example above), it's a much-appreciated ego boost, and make it easier to accept the help we need.
For me, personally, a goal I have is to provide a home-cooked meal for my family. Even on a bad day, I will still make that a priority. I plan our meals in advance each week, and we shop together for our groceries each Saturday as a family. The menu is posted so Niels knows what's for dinner. On a good day, I'll have dinner ready when he gets home. On an average day, I might have it started, or be waiting for him to help me make it. On a bad day, he cooks while I rest. So, for me, unless I'm laid up for awhile (recovering from surgery, etc.), I want to cook my own meals. But that's me. I enjoy cooking, it relaxes me, and get a sense of accomplishment from doing it.
On the other hand, we're getting ready to sell our house, and there's a lot of work that goes into de-cluttering, de-personalizing, deep cleaning and packing. It takes a lot of mental energy that's hard for me to sustain. Concentration, multi-tasking and organization don't come as naturally to me since my TBI, and I get frustrated trying to use those skills while Daniel is "helping" me. The process is slow enough, but even more so when I can really only make progress when Daniel is sleeping or with Niels. So for me, offers to host a play date for Daniel are greatly appreciated, as are offers to come over and help me clean.
I would agree that I have about four days a month when I can't function normally. Some months are more, a rare month has less. Perhaps in a future post, I describe a typical day. As a worst case scenario--maybe once every couple months, Niels will need to stay home or work from home. That's because my headache is so bad that I can't get out of bed and need the lights off and a quiet place to rest. On other bad days, Daniel and I stay home and I lay on the couch while he plays. It both saddens and comforts me to know that he seems to sense when Mommy isn't having a good day.
One of the challenges of having a brain injury is that I look fine, so it's sometimes hard for people to understand my limitations. I am often told, "You seem fine to me." It's meant as a compliment, so I try to take it that way, but what people don't realize is that I don't leave the house unless I'm having a good day. Most weeks, that's only once or twice a week. The rest of the time, Daniel and I stay home all day. I don't let people see my bad days, so they don't think I have them. As we've been developing friendships here in Canton, there have been times when our friends have seen me crash. It's humbling, but ultimately helpful for their understanding.