From a Rare Parent: Squinting at a Glass Half Full
December 15, 2015
By Elizabeth Paddock
Life is all about perspective. People either say the glass is half full or half empty. But life with a rare and chronic illness often feels like someone smashed the glass on my head. It’s hard to decide if I’m a “glass half empty” or a “glass half full” kind of girl when I’m tiptoeing over shards of broken glass.
I’ve always tried to be a positive person, though that has become increasingly difficult with my illness. Having a rare illness means countless encounters with doctors who shrug their shoulders or shake their heads, having never encountered anyone quite like you before. It means having to advocate for yourself tirelessly in the face of doctors and medical staff and even insurance providers, eventually realizing you know more about your disorder than all of them put together. It gets hard to hold on to hope- hope that tomorrow will be a better day, hope that someday someone will know how to help you, hope that someday your stampeding zebra feet will be recognized as the sound of horse hooves.
In addition to keeping a positive outlook in regards to health, many of us have to keep a positive outlook on parenting as well. So on those days- those all too often days- when my body is completely falling apart and someone has shattered my glass of perspective over the top of my head, I have to somehow pick up the pieces and glue them back together well enough to pour water into that glass until it’s half full. It’s not always easy, but I’ve learned that looking at things in a different way- just a little change in perspective- can help immensely.
I once got a little nudge towards a positive perspective from a wonderful nurse. It was Valentine’s Day and I was spending it hooked up to IV fluids in the medical short stay unit of our local hospital. My husband, forever my hero, had taken the day off of work so I wouldn’t be alone. At some point during my second liter of fluids, I half-jokingly/half-seriously mentioned to my husband that this was the first time we had ever been out on a date for Valentine’s Day! The nurse who was in checking my IV happened to overhear and moments later she returned with a heart shaped donut from the nurses lounge and two cans of cranberry juice to help us celebrate our “date”.
My heart smiled.
Lately it seems my medical appointments are the only times my husband and I get to spend together without our kids. While carving out alone time is important for parents to maintain their relationship (and their sanity!), we don’t get to go on actual dates because we need to save Grandma and Grandpa babysitting time for appointments and hospital visits and sick days. But ever since that Valentine’s date, I began to see my appointments- and our time together- differently. I began to see them as dates. I recently had to make a three day trek from Michigan to Minnesota to see a mast cell specialist. Despite the fact that we spent three hours in a doctor’s office, I spent the entire first evening in stage 3 anaphylactic shock, and then spent the next 24 hours peeing in a giant orange plastic jug that had to be kept on ice in a cooler in the hotel bathroom- I tried to look at the trip as a vacation with my husband. Surely it wasn’t the kind of romantic getaway anyone else would dream of, but for us it was the first time we had been away together in a long time and instead of wishing we could take a tropical vacation like a normal couple, I took every opportunity I could to enjoy the vacation we did have. With this fresh perspective, I returned home feeling renewed and reenergized.
I’m also learning to change my perspective in regards to my children as well. I often feel guilty about the time I spend laying on the couch or the days I’m not well enough to take a trip to the bookstore or museum with them. It’s easy to be consumed by the guilt and the anger and I fall victim to the “Why Me” pity party more often than I’d like to admit. Though if I take the time to realize it, I know my sons are learning valuable lessons alongside my illness. They’re learning compassion and patience and understanding. They’re learning the importance of listening to one’s own body. They’re learning the importance of caring for those around them. They watch my husband step up when I’m ill- doing all of the cooking and cleaning and the mountains of laundry- and they’re learning what it means to be real men. When I’m able to see our lives this way, the guilt and anger give way to subtle kind of happiness and gratitude.
I used to spend a lot of time wishing I had one of those lives where it was always so easy to see the glass as half full. But I’m slowly coming to realize that if I squint just a little, my broken and hobbled together glass isn’t just whole again, but it is often overflowing. Shift your focus just a tiny bit. Change your perspective just a little. Even if you can’t always glue your glass back together, looking at things just a little bit differently might help you get through to brighter days.
Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her writing. She has written for the medical talk show Ask Dr. Nandi as well as the award winning Hollywood Mom Blog and is currently working on her first book about gifted education. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.
Sign up for updates straight to your inbox.