Hi Everyone,

It’s been a long weekend. Corey has not been herself since last Friday. She has been complaining of headaches and that her eyes hurt. She’s been lethargic for the better part of the weekend as well. I’m keeping a close watch on her. It could be the weather but it may also be a number of other options including a sign that there might be shunt issues brewing. I’m cautiously trying not to speculate.

In addition to the therapy issues we are having, we’ve also had limited nursing this month which makes it difficult to do anything but be on call 24/7. Corey’s short term memory has been getting worse especially recognizing our nurses. She has been increasingly agitated. The nurses are having a difficult time trying to redirect Corey when she gets upset. She won’t settle down for them and calls out for me. Once she either physically sees me or can reach me by phone, she will calm down. As you can imagine, this can be unsettling as I try to work or get “life” chores accomplished.

I chose not to write the past few days to step back and refocus on Corey and myself (not having a minute free was a contributing factor as well). Last week was the toughest week we’ve had in quite some time.

Stepping back has allowed me to be quiet, get centered and think. Examples of my sales experience kept presenting themselves. When I didn’t need any new business, that’s when I would get more jobs. When I was desperately trying to increase sales, that’s when it seemed I couldn’t find any new customers. Sometimes it seemed the harder I tried the less effective I was. Whenever I was trying too hard I’d get uptight and centered on one thing and lost my effectiveness. That’s when I knew I needed new perspective. What happened? I would back away for a little while (usually taking the weekend off) by Monday morning I was relaxed and could see more clearly.

Another voice haunted me this weekend. That of Melody Gardot cautioning me; ‘don’t lose yourself in your daughter’s recovery’. Those words ran through my mind repeatedly. I was reminded that perspective is vitally important but so is balance. Without either tunnel vision will lead to burn-out.

Everyone recites the famous airline example we all hear, ‘place the mask on your face before helping the person next to you’…in “real” life that’s hard to remember. Integrating all aspects of my life can be difficult. Taking time for fun, friends, the kids, or even my favorite hobby is challenging when faced with such unusual demands but that’s when it is the most critical.

Being a caregiver is very similar to my sales experiences. If I become obsessed with a particular outcome or detail I will lose balance. The trick is to remain focused on the outcome we need without becoming consumed by it. Caring for Corey must have the same cause and effect. The good news is we will be working with a second agency to share Corey’s required nursing hours. Hopefully we will be staffed at 100% shortly. Once that is in place I can put the mask on my face and integrate a healthy balance of activities in my life. This in turn will strengthen me to continue advocating for Corey and reenergize me for the most important job I have…mom, xoxo