Parenting Help

One of the things I enjoy about long car trips--besides spending time with my family--is the opportunity to catch up on my magazines. For some reason, hanging with a 20-month-old all day doesn't give me a lot of leisure time! So, when we take off on a trip, I load up a bag with a few magazines and use that time to catch up.

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 FRIEND

Trying 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.

My Husband, My Helper

I've come to the conclusion that there really won't be any rhyme or reason to this blog. I know my last post was about the organizational strategies found on my frig, but I'm taking a detour today to write about the best thing that's happened to me since my brain injury: meeting and marrying my husband.

I'll admit that when I sustained my TBI at age 32, I pretty much lost faith that I would ever marry. Unemployed, overweight, brain-injured, broke women over 30 don't top the list of descriptions for your average guy's dream girl.

But, God smiled on me, and imported this amazing man into my life. He also answered my prayer that the right guy would be very clear in his pursuit. When Niels and I met, he Googled me, and learned about both my brain injury and the book I wrote. He read up on brain injury and ordered my book from Amazon. He jokes that I'm easy to understand because I came with an owner's manual.

There are a million reasons why life is better with Niels. The fact that he's my sugar daddy takes all the financial stress away, which is a huge help. But beyond that, his easy-going nature and knowledge of all things technical has made my life much better. He is my advocate: to my family, our friends and my medical team. And he studies me and knows how to make my life easier and stretch my limited mental gas tank.

One small thing that Niels does each night that makes a big difference to me in the morning, is tidy up the front living room (aka Daniel's Disaster Zone) and kitchen. My brain doesn't do disorder very well, so when I wake up to clean counters and an organized play room, it's the equivalent of walking out to a warm, running engine in the middle of a Minnesota winter versus standing out in the cold trying to flag someone down to give you a jump. It takes him maybe 15 minutes to put away the toys (Daniel is finally old enough to help!), clear the table and countertops, clean the sink and start the dishwasher, but it gives me about an hour of extra energy the next day.

My Brain on Ice

Last night we hosted our small group for Bible study. I always like when we host because it gives me a chance to cook, which I'm growing to love more and more. It also gives me an out if I need it, and I can easily slip upstairs if I'm too tired or my headache is really bothering me.

The topic last night was how to use our unique spiritual gifts, heart/passion, abilities, personality and experiences to serve others. I was especially interested in this topic because I've been struggling to figure out how I can benefit others when my post-TBI life is so limited.

We had a special guest to walk us through the questionnaires we filled out. As new visitors usually do, Trent comments on the various lists, calendars and other visual cues around the kitchen. People mistake these things for organization, which might have been true in the past, but are now my brain out for the world to see. On the frig, I have my short-term memory.

I found this stackable dry-erase calendar at a discount store. I don't think they make it anymore, which makes me even more grateful to have it. We use it in many ways:

1. To keep track of the days. Basic, I know, but you'd be amazed at how often I couldn't tell you the day of the week.
2. To note appointments. Not surprising, as it is the main reason people keep a calendar. We go a step beyond that, however. By putting my commitments (especially anything that would require me to leave the house) on the calendar, we can see at-a-glance any potential for a crash. (A crash is when my brain is overstimulated and shuts down, causing me to have to stay in bed for a day or two). As a general rule, we try not to schedule 2-3 things a week. In a typical week, that might be church, small group, and storytime at the library. Out of necessity, most things wait until Niels can be with me: church, small group, groceries, errands other than dropping of a check at the bank or mailing something at the post office.
3. To strive for balance. I really struggle with knowing how to use my limited cognitive energy effectively. Our appointments are color-coded so we can easily see trends in priority. Some weeks I have a lot of appointments, other weeks I do more with Daniel or church. I tend to focus on one thing at a time, and am terrible about losing touch with people that are important to me because I run out of time and energy. I haven't figured out how to fix that...yet.

My Brain on Ice

Last night we hosted our small group for Bible study. I always like when we host because it gives me a chance to cook, which I'm growing to love more and more. It also gives me an out if I need it, and I can easily slip upstairs if I'm too tired or my headache is really bothering me.

The topic last night was how to use our unique spiritual gifts, heart/passion, abilities, personality and experiences to serve others. I was especially interested in this topic because I've been struggling to figure out how I can benefit others when my post-TBI life is so limited.

We had a special guest to walk us through the questionnaires we filled out. As new visitors usually do, Trent comments on the various lists, calendars and other visual cues around the kitchen. People mistake these things for organization, which might have been true in the past, but are now my brain out for the world to see. On the frig, I have my short-term memory.

I found this stackable dry-erase calendar at a discount store. I don't think they make it anymore, which makes me even more grateful to have it. We use it in many ways:

1. To keep track of the days. Basic, I know, but you'd be amazed at how often I couldn't tell you the day of the week.
2. To note appointments. Not surprising, as it is the main reason people keep a calendar. We go a step beyond that, however. By putting my commitments (especially anything that would require me to leave the house) on the calendar, we can see at-a-glance any potential for a crash. (A crash is when my brain is overstimulated and shuts down, causing me to have to stay in bed for a day or two). As a general rule, we try not to schedule 2-3 things a week. In a typical week, that might be church, small group, and storytime at the library. Out of necessity, most things wait until Niels can be with me: church, small group, groceries, errands other than dropping of a check at the bank or mailing something at the post office.
3. To strive for balance. I really struggle with knowing how to use my limited cognitive energy effectively. Our appointments are color-coded so we can easily see trends in priority. Some weeks I have a lot of appointments, other weeks I do more with Daniel or church. I tend to focus on one thing at a time, and am terrible about losing touch with people that are important to me because I run out of time and energy. I haven't figured out how to fix that...yet.

I've been thinking...

As I write this, I realize it has been nearly two years since my last post. It's not that I haven't wanted to write. It's not even that I didn't have an idea of what to write. It's that I can't write. Well, maybe can't is a strong descriptor. In actual fact, I can still write. It's just that, before my brain injury, I couldn't not write. I was constantly writing down snippets and ideas. I had notepads in my car and by my bed. I sent emails to myself from work so I could work out my words when I came home--and could still catch my train of thought! I often woke up in the wee hours to write several pages at a time. I couldn't type fast enough to keep up with my thoughts.

Now, my mind is quiet. Words are hard to come by. Descriptions fall me as I struggle to name my thought. Ideas are few and far between. And the quality of my words isn't nearly what it used to be. I miss that part of my mind more than anything else.

Every once in a great, great while--like tonight--I get a taste of my old brain, and the words come. Not in a torrent, but at least a trickle. When I can, I set down at my keyboard and let them out. Sometimes, in my new life, my words come at a bad time, like when my toddler son wants to play, or be fed, or be changed. Sometimes I fight against his needs for my wants. But in the end, the words slip away and I wait the weeks or more often, months, until they return.

Two weeks ago, I finally met with the administrative law judge for my social security disability hearing. It was a humbling day, the culmination of six years of coming to terms with my brain injury, and three years of muddling through the disability process. I realized, sitting before the judge and explaining my life as it is, as well as the life I lost, that what I miss the most is my ability to write: clearly, concisely, compellingly...as well as quickly, continuously and professionally.

It's been hard adjusting to my new normal. Once of my greatest challenges is knowing how I can contribute to the world. I do realize, that able-brained or not, at this point, raising my son would be my priority, and my contribution to the world is raising a healthy, happy boy. But he'll be in school before I know it, and when he is, I wonder how I'll fill my days.

I love being a mom. It gives me purpose again. When Niels and I were first married, I stayed home. I would tell strangers that I stayed home because I was new to the area and there wasn't anything in my field. That sounds better than telling them I'm brain injured. Making new friends is hard enough. Now that I'm a mom, I can say that I stay home with my son. Voila! Instant respect.

But, in our church and among our friends, I'm still struggling to find my place. I've been cooking a lot. And really enjoying it. When I make a meal for my family, I feel like I'm contributing. It's also a way for Niels to gauge how I'm feeling. If dinner is ready when he gets home, it's been a pretty good day. If it's not, or if I ask him to make it, he knows that I'll be going to bed early.
I don't think people realize how much I rely on my husband to help me function. Of course, not having to support myself is a huge stress relief, which is a big part of it. But I've also learned to implicitly trust him. He can see when I'm teetering close to a crash long before I can. If he sends me to bed, I know I need to listen to him. I am more confident because he is my advocate. If I'm not having a good day, I know he can explain or excuse me. But most of all, I feel like we're on the same team, and every day is planned to make the most of my diminished capacity. We plan for down days. We limit how many times a week I leave the house of my own. We avoid crowds, concerts, restaurants, malls and any other place that would muddle my mind. These places aren't totally unavoidable, of course, but we realize that when we venture there, it will take me time to recover.

It's like I used to drive a Prius with a full tank of gas. Now I have a clunker of a brain that's only ever 1/4 full. I have to watch my cognitive mileage vigilantly. People talk about how organized I am. I used to be. I'm not anymore. Not really. I can have an idea, but the part of my brain that gives the steps to accomplish that goal is gone. That's where Niels saves me. He helps me break things down into little steps. My brain doesn't work that way anymore. When I'm frustrated or confused, he takes over the project and finishes for me. I have lists and calendars and notes all over the house. Not because I'm organized, but because I can't function without them. I carry a camera with me at all time because I can't remember things for very long.

Here's an example. We just returned from a week in Minnesota. Every day was packed with activity. We take tons of pictures. At night, we go through the pictures so I can relieve them and try to remember what happened. Each night, Niels writes up an entry on our blog so I can go back and relive the details. I upload pictures from our camera and write captions to remember the story. Even with these opportunities to make memories of my moments, I still forget so much. I remember emotions, not memories.

While in Minnesota, we visited one of my best friends. She and I have been friends for nearly twenty years. We've lived a lot of life together, and shared a lot of words. She was an early supporter of my writing career. I love that no matter how much time passes between our visits, we can always pick up where we left off.

Steph and I were talking about all this, and she was learning from both Niels and I more about what my life looks like now. We were talking about some of the tricks I've learned to cope with my limitations and she encouraged me with the idea that all my intelligence, organization (!), ideas (!) and contribution to the world were still in my head somewhere, they just needed help getting out. And I have help. I have an amazing husband, a great medical team, and a growing group of supportive friends. I may not write any more books, but maybe I can use this blog to share some of the things I've learned.

I told Steph that there's a reason that there aren't many books about brain injury written by brain injured people. It's because the part of our brains that make us able to organize, create, edit and develop a book is no longer working. She countered that I don't have to put it all together. I know how helpful to me it has been to read other people's stories. Many I can do some good here.

Later.

Right now, my head hurts and my brain is spent.