After a losing battle trying to find a comfortable sleeping position, I sat up in bed, maneuvered my laptop around my big pregnant belly, and started googleing for “tips for having twins”.
By the second hour, I had a wealth of information, mostly from reputable baby and parenting websites. But my favorite website had a forum of a group of twin mothers on a discussion board. Each post was a humorous or sobering take on what it was like to have two new babies simultaneously. One veteran mum even joked, “Forget everything you thought you knew.”
One post caught my interest in a sea of other comments. “Get bottles of different colors,” the mother wrote. “Because at three in the morning, you won’t remember who drank from what.”
“Makes sense,” I said just loud enough to make my husband stir in his sleep.
“And write it all down,” the poster continued. “Write down every dirty diaper, every feed, because when the doctor asks you all these questions, you won’t remember them.”
So when our twins were born, I wrote it all down, proudly pulling out my big binder and bringing the pediatrician all the necessary answers to her questions. Writing everything down was a lifesaver.
Yet nearly nine years later, sleep deprived, frustrated and overwhelmed, I sat in the emergency room with my eldest daughter, whom we’ve called Ladybug since birth, unable to remember her current medications, when her symptoms have started or how long their had happened. When a third nurse asked me the same series of questions, I sighed and let out an “I’m not sure”.
In the past, I had been exceptional in situations like this. As a trained theater actress, I pride myself on remembering an enormous amount of information because of the way we learn lines. But I couldn’t keep up when the unexplained symptoms of Ladybug kept happening or when the doctors were puzzled by the random facial swelling, sore throat, and stomach aches.
In my head, I would scold myself. Every time we had to take Ladybug to the ER, it brought our house to a standstill, and those moments leading up to the visit seemed memorable at the time. So why couldn’t I answer any of the crucial questions I knew were coming? It was like a test of my motherhood that I constantly failed.
The most important thing I forgot was to remember Why my memory was failing me. It wasn’t just about remembering the onset of Ladybug’s symptoms, her medications, her long list of allergies, or her last albuterol treatment; I had three other children. I had to remember to sign releases, email the twins’ teachers, make sure my oldest son signed up for his classes, and the last ingredient in the dish I was cooking for dinner.
Of course, none of this included the things I needed to remember as a business owner and independent contractor.
My brain was full.
When Ladybug was finally diagnosed with hereditary angioedema in 2021, the information was so overwhelming that I was devastated at what I should remember. While being trained by a nurse to administer Berinert, I made a slight joke about having to remember too much.
“You can’t,” she replied. For a moment I was offended. How dare she challenge my attempt to recall the necessary information! “Don’t even try,” she continued. “Just write it down.” She was right. I couldn’t believe I forgot the lesson I learned as a mother of newborn twins. And even if the emotional toll was much greater, the solution remained simple.
Now I know it’s okay if I have to pull out my phone to see the date of Ladybug’s last flare. It’s good that I take a small notebook out of my bag to remember the last time I had to give him an infusion. It’s great that I have an app that lists allergies and medications on my phone. Recording this kind of information doesn’t make me a bad mother because I can’t remember it off the top of my head; it makes me better.
The best thing a caregiver can do is not try to live up to the supernatural being we think we should be; it is to embrace the human beings that we are.
Note: Angioedema News is strictly a disease news and information website. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The views expressed in this column are not those of Angioedema News or its parent company, BioNews, and are intended to stimulate discussion of issues relating to angioedema.