Friday was a tough day. Saturday was better. Sunday was okay. Monday, yesterday, was pretty good! Today was another tough one. In the brightness of yesterday, I set high hopes for today. They included doing some laundry and running an errand. Yes, those are high hopes. Too high, evidently. Maybe it is an adjustment to my new meds protocol (more on that soon), but I felt terrible for most of the day. Once I managed to get my son off to school, I was pretty useless. Which brings me to the hardest part, for me, of living with Lyme: being a mom at the same time.
I remember a distinct moment, sometime in late fall, when I told my son “I can’t right now, I feel really sick today,” and I realized that I had been telling him that a lot…for a long time. It hit me like a ton of bricks. “I can’t,” wasn’t something I had ever imagined saying to my child so frequently. I felt like I was letting him down, and it was a horrible feeling.
There have been days when I’m not sure who has it worse – me or him. Before mid-September, when I first got really sick, we would play outside almost daily, regardless of weather. My little guy is very active and athletic, and we did a lot of running and jumping. Roughhousing, living room dance parties, and Catch Me If You Can were regular staples. When I got sick, that all came to an abrupt halt.
Sometimes I can tell that he is angry or sad. Seven months is a long time to a nearly five-year-old. Sure, I have some good days when we can do normal things, and some things we can do together even on my worst days. But I hate not being able to be the mom I want to be – that I used to be – all the time.
I talk to him about it. I try to help him acknowledge his feelings about my being sick. I try to validate them by letting him know that sometimes I feel sad or angry about being sick too. I bought him a storybook about having a mom who’s sick. He knows that I have Lyme Disease, and occasionally, he likes to check in and ask if I still do. He knows about the medicine I take, and I remind him how I’m working hard to get better. On days when I feel well, we don’t talk about it at all – we have fun and enjoy.
We have gotten creative. My little athlete and I often play catch sitting down. Or I’ll challenge him with activities – see how fast he can run from here to there and back, dictate a certain number or style of jumps for him to do on his little trampoline, or play DJ for a freeze dance. Luckily, he has recently started to enjoy drawing and coloring more, along with card or board games. Of course there are always book to read, but on bad headache days, I can’t even do that, which leaves us with tv/movies.
I am a person who tends to have trouble taking care of herself, but the motivation of being well for my son helps push me. I sometimes feel guilt about the amount of time he spends at preschool, but I know I need that time to rest in order to have any hope of enough energy and wherewithal to care for him during the time that he is home. It is hard to be sick for months. It has hard to feel like I’m disappointing my child, who I love more anything. But I have limitations right now, and I have to respect them. Hopefully, one day these limitations will be just a memory, but until then, all I can do is my best – and be grateful every day to be mother to this delicious snuggle bug.