I was sitting with my two daughters in the living room last night watching the live action Beauty and the Beast, which is now on Netflix. X is quickly becoming a teenager while Zo is still truly a child; nine in February. We were discussing why Belle would never marry Gaston, before X slipped out to go sort her Pokemon cards and Zo showed me the stapled pages of the book she’d just started working on. “My Family,” it said on the cover, and then on the first page she’d written “I love everybody in my family because they love me back.” One week ago at this time, I’d been buried beneath thin downy layers on my bed, the window air conditioner cranked up against the odd 90 degree September heat, a fan propped on a chair nearby as I tossed and turned and pressed an ice pack against my swollen eyes. But now, tonight, I was there, the dog sprawled at my feet, the girls running back into the room or jumping up just to give me a hug. John dozed on the couch, exhausted from his week of instructing college education courses and working on field placements for future elementary teachers, not to mention doing more than his share of dishes and laundry.
The hardest thing about having a mom with migraine
Sitting there, one eye on the provincial life on the TV and one eye on my computer screen, I decided I’d write a piece from the girls’ perspective, asking them questions about what it’s like to have a mother with a chronic illness. “What is the hardest thing about having a mom with migraine disease?” I asked Zo as she sat engrossed in her drawing, glancing over her shoulder now and then to check out LeFou’s shenanigans. “The hardest thing, I think,” she said, chewing on her pencil, “is that sometimes I don’t get to see you very much. I get sad because I don’t see you, and I also get worried about you feeling so bad. But one thing that is good is that I always know that you are going to be okay.” She smiled and bent her head back over her pages. I was pleased, because that is something I always made sure to tell them, over and over, that no matter how sick I looked, no matter how many days and nights I had to spend in bed, in the end, I would always be okay.
I asked X the same question, and she responded, “The hardest part is when the family is planning a fun event, and we’re all excited and then you can’t come because you get sick. We usually will still do it without you, but it’s not as fun. And… even though you usually make most of the performances of our plays and everything, I worry about you not being able to, or that pushing yourself to come to them when you don’t feel well will make you worse.”
Child with migraine
“How do you feel about having migraine yourself?” I asked her then. “It can be tricky to try to figure out what is happening to you when you start to feel irritable and frustrated,” she responded. “Like at a concert, when it’s loud, and bright, and you feel stressed… and only later do you realize you had a migraine all along. It may be easier for me having you be so familiar with it, I mean, it’s your life. So you have taught me a lot and know what to do for me.”
“Do you think you’ve learned anything from my illness?” I asked X as she continued to sit next to me, her forehead creased with thought.
“I think that I’ve learned some general life stuff. That even when bad things happen, most of the time they will turn out okay.” This made sense to me, because at twelve, she’d seen her share of things going really wrong, and many of those things at least had their beginnings in me being ill. But, in the end, we still had our home. We still had cars and pets and things and each other.
Migraine doesn’t mean mom can’t do amazing things
Later, I asked Zo what she thought she might have learned from my illness. Her answer was a bit different. “I have learned that even though my Mommy has migraines, that does not mean that she can’t do amazing things.” X and I glanced at each other and I smiled. X and I were both thinking of a time when Zo had been just four years old, and was feeling frustrated by my limitations and had blurted out “All you know how to do is lie down and rest!” Even while I understood the aching heart of my youngest child, who right then wanted an active mommy who wasn’t always tired, I was deeply wounded by her careless statement. The next day when I awoke, I found next to my pillow a list, blue magic marker on white printer paper. “Things Mommy Knows How To Do” in X’s eight year old handwriting. “1. Drive. 2. Take care of Kids. 3. Take care of Dog. 4. Sing. 5. Care for her illness. 6. Play. 7. Eat. 8. Go on computer…” and so on. It is still on the wall behind my bed, one of my most treasured items.
What’s the positive of mom having migraine?
I then asked X, “What is the best part of me having migraine disease?” I said, “I know it’s a bit of a confusing question, but I bet you can think of some positives.” X thought and then said slowly that when I had been working full time, I had to work evenings and almost never got to see the girls, especially X, who was then in school all day.
“I remember you tried to get them to change your hours, and they said no.” Her eyes filled with tears, and she blinked them away while I choked back my own. I knew this story. I still know it backward and forward. “You were miserable and started to get sicker, maybe because they wouldn’t let you see your family, I mean, that couldn’t have helped.” She described how much she had missed me, and how she’d try to stay up late enough to see me when I got home but usually she wouldn’t make it, and she would write me notes. “And finally,” X said, looking up at me, “you had to quit. And even though you quit because you were too sick to keep working, I was really happy, because I was getting my Mommy back. And we got to spend a lot of time together, and part of that was figuring out things for me to do, and you suggested I audition for a play, Charlotte’s Web. I didn’t actually get a part, but I decided to do crew, and I loved it so much. The next play was The Best Christmas Pageant Ever, and we all auditioned, even Daddy, and we all got parts. And Mommy, you didn’t end up missing a single rehearsal. Then they asked you to join the Board of Directors.” It’s true; if I had still been working full time, I never could have auditioned for a play with my family, or even had enough time to help X prepare for her own auditions, and certainly could not have joined the advisory board of our youth theatre group. I would either be desperately sick in bed, or at work. There was no in between. She continued,”You’ve always done those things with me and helped me, and because of that, I found my friends, and my place. I’ve gotten a part in every play since Pageant, because of you. And also sort of because of your illness.”
When the same question was posed of Zo, she responded without hesitation,”Migraine disease makes Mommy different and special.”
Both girls also discussed all of the friends I have online, people that support me, as well as people I help to learn how to advocate for themselves and become more educated about their particular type of migraine disease. The people who read my blog, or stories like this one on Migraine.com, and identify with what I’ve been through and realize that they are not alone, even though what they are experiencing is one of the most isolating illnesses there is.
It’s a chronic illness, but not a terminal one
“Any final thoughts?” I asked them both. X said, “It’s a horrible illness, but you always tell us that it can’t kill you. I know it can indirectly. But Isobel and I just always tell ourselves that you always come home from the hospital; you’re always okay eventually. It’s a chronic illness, but not a terminal one.” Zo answered, “Having the experience is both good and bad. It’s who you are. It means that you’re home more since you can’t go to an office or building to work, you stay here. But a lot of that time, you’re in bed and we miss you. But that’s who we are as a family. We look out for each other and love each other no matter what. In sickness and in health.”