By Elizabeth Paddock

 

Parenting and suffering from a chronic illness are not always compatible, especially with young children. My husband and I have six-year-old twin boys and if I ever wonder what happened to the energy I used to have before my illness, I can rest assured knowing it was reincarnated in my sons- tenfold!

Not only are our sons highly energetic but they are also kinetic learners. They experience and process the world through their little bodies, which means they are literally in perpetual motion. Our oldest twin was only 15 months old when I discovered him perched atop the refrigerator in the kitchen. With a trail of chairs and boxes scattered behind him, there he was, sitting crossed legged and grinning like the Cheshire cat as he observed the world from a new vantage point. I wish I could say he and his brother have slowed down since then. They haven’t. The problem is, I have.

My illness, Mast Cell Activation Disorder, is unpredictable at best. Some triggers- including certain foods, scents, or even stress- can cause a debilitating fatigue. Not just a “Hey, wouldn’t it be great if I could take a nap” kind of fatigue but an all-encompassing “Going down like a sack of potatoes” fatigue that seeps deep into my bones in the most painful kind of way. Even being able to lay flat and close my eyes doesn’t provide relief. Other times, my MCAD triggers long bouts of nausea; severe episodes of tachycardia, dizziness, or joint pain that makes it difficult to keep up with anyone, much less two over-active six year olds. Somedays are good. On those days, I do what I can- within my limits- to enjoy time with my kids. We go outside to play, visit museums or craft stores, or spend the afternoon at the bookstore. Other days are really, really bad. On those days I have to call in reinforcements because I am too sick to tolerate the noise and movement of my own kids. But most days are somewhere in-between. Most days we spend at home where I have some energy in the mornings but by afternoon I need to be resting to keep my symptoms from escalating any farther. These are the days I often find it hard to interact with my sons- to really play with them and engage with them in a meaningful way. They want to be up running around but mommy simply can’t keep up. If I lay on the couch and leave them to their own devices for too long, I struggle with mommy-guilt.

While we spend a lot of time with board games and books, there are plenty of times our boys just don’t want to play any more board games or read any more books with mommy. I’ve had to get a bit creative! This is a list of simple, calm activities we can do together from the couch or dining room table. When we change things up frequently, my sons will often come spend short periods of time playing with me in a fun, meaningful way… before they go racing off again to burn off more of that never ending energy! We keep a box containing many of these materials together and I am thankful for the time they have allowed me to spend with my sons even when I’m feeling less than capable of parenting at my best. I hope you too can find a few activities to help make parenting with a chronic illness just a little bit easier!

 

  • Eye Spy: Simple and old fashioned! This is a great game for even the youngest of children and a fun way to spend some quality time together while laying down.
  • Scavenger Hunts: From my perch on the couch, I’ll send our boys off in search of random items throughout the house. The more unique or difficult the item, the more fun they seem to have!
  • Shadow Puppets: Keep an old flashlight handy for some shadow puppet fun- a great laying down activity that is sure to bring loads of giggles!
  • Small card games: UNO or Spot It Jr. are great card games for kids. They even make card holders for tiny hands to help ease any frustration of holding a handful of UNO cards!
  • Tiny game books: Amazon sells some super cheap pocket sized maze books and dot-to-dot books that our sons love to work on together. Bonus: These are both excellent for developing the eye muscles young children need for vision tracking and convergence!
  • Scratch and Sketch books: Another relatively cheap Amazon find that makes for great fun together. There are all sorts of themed books where little (and big!) artists scratch designs into black paper to reveal colorful rainbows below. It’s different enough from normal coloring to keep a little one’s attention for a good while.

 

For days that I’m able to be up at the dining room table to play but still need some calm quiet activities for us to enjoy together, these are a few of our favorites:

  • Play Dough: Homemade (to be made on a good day!) or store bought, Play-Doh is a calm, sitting down activity to enjoy with your little ones on a day you’re not up for much.
  • Marshmallow Bridges: I’ll be honest, we don’t always end up with bridges- but giving your little ones a bag of mini marshmallows and a box of toothpicks allows for imaginations to run wild without running anyone ragged!
  • Free Coloring Pages: Go to Google.com and type in “coloring pages” (plus any theme your kiddos might like) and then hit “Images”. Up pops hundreds of free coloring pages to print out! Add some crayons or colored pencils and you’ve got yourself a quiet, soothing activity for everyone!

 

ABOUT ELIZABETH

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.

 

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