How to Manage Your Chronic Illness When Your Kids Are Home All Summer

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Summer vacation is the time of year many of us look forward to with excitement and dread at the same time. Because as fun as it is to spend more time together as a family and make memories, having your kids home all summer does come with additional challenges for parents with chronic illness.

During the school year, you’ve probably developed your own routines that allows you to do work, chores and/or childcare, while working around your health problems as best as you can. But over the summer months, you have to juggle your unpredictable symptoms, low energy and limited mobility with your kids by your side, for weeks or months on end. And that can be tricky for everyone involved.

So what can you do to make this season a little easier on your body and brain, but still experience that summer magic? 

What works for you and your family depends on many factors, from your specific health condition to your living situation and the number and age of your children. But here’s a general playbook you can adapt to your own wants and needs, packed with accessible tips how to manage your chronic illness when your kids are home all summer.

1. Get all the help you can get

It takes a village to raise children, and that’s even more true when you’re a chronically ill parent. So don’t try to do it alone and get the help you need.

Sign your kid(s) up for summer camp or a daytime sports program in your area. Hire a babysitter or mother’s helper for a few hours or days a week, to let your child(ren) blow off steam while you rest. For older kids who are more independent but still need supervision, maybe you can team up with another parent in your neighborhood and take turn watching them.

At the same time, if you’re spending more of your limited energy on childcare and fun summer outings, you’ll have to compensate in other areas of life. Aside from letting your children and partner do more chores, you could order groceries and presents online, keep meals simple, pay a neighborhood teenager to help with mowing the grass or cleaning your home. Lean in on any systems you already have in place to make things run more smoothly without overexerting yourself.

Learn how you can best mobilize your support system when you’re living with chronic illness, without overwhelming your relatives or hurting your relationships.

2. Create a supportive environment

When your children are home all summer, your house and outdoor spaces can either quietly drain your energy or support your days. Depending on your kids’ ages, creating a supportive home environment could look like:

• Have safe areas for your children to roam around in free. The less you have to physically chase, redirect or supervise your kids, the better for your wellbeing. Consider fencing off part of the garden or setting up a play pen in your living room for younger ones, so they can play without you needing to be on high alert all the time. In that spirit…
• Choose the right environments for outings. If you’re well enough to get out of the house, going to a public pool with lifeguards, bathrooms nearby, sunshade and food available can be more comfortable than heading to that beautiful but unsupervised lakeside without facilities. Wherever you go, scout the location in advance if possible: look for seating, shade, parking close to the entrance and easy exits for when you hit your limit earlier than expected.
• Set the scene to make daily life easier. Keep your medical essentials like a cooling towel, electrolyte packs, noise-reducing earplugs and mobility aids within reach, to save yourself searching for them all over the house. Also, encourage letting your kids take care of themselves, safely and in age-appropriate ways of course. A low basket or shelf stocked with rotating toys and craft supplies encourages independent play without them needing to ask you where everything is. For older children, keep easy, healthy snacks somewhere they can easily grab them. Every small task your kids can manage alone saves you energy in the moment.
• Get creative with rest spots. If you can’t retreat to your bedroom like you’d normally do, having a comfortable place to lie down in the same room where your kids are playing can be a game changer. A recliner in their play area, a daybed in the backyard or a comfy floor cushion on the patio, whatever lets you stay present while giving your body a break.

A little organizing goes a long way in supporting your health and happiness during the summer months at home.

3. Find a family rhythm

To key to managing your chronic illness with your kids at home is finding the intersection of your natural daily rhythm and that of your child(ren). Tricky, I know, but this strategy can have bigger on your kids’ mood and behavior as well as your energy levels and symptoms than you’d think.

When my own kids were younger, they would be ready to tackle the day an hour after waking up – way too early for my body to function well. But if I took my time to gently start up and then get them outside by midmorning, the whole day would run so much more smoothly than if I would try to have a relaxing day at home. My children really needed some physical and mental stimulation before lunch, or they would get restless and irritated. Going for a scooter ride or playing in the park midmorning ensured they would quietly puzzle, play with cars or do crafts at the dinner table during the late afternoon, when my energy was naturally low.

So take a closer look at your kid’s natural rhythms and patterns in your own energy levels and symptoms:

• Do you all love sleeping in, slow mornings and late nights? Are do you prefer (mid) morning activities, because you run out of energy later in the day?
• If you have a napping child, could you rest during their nap time or do you want to try to move that window to a time when your energy’s usually low? Think outside the box: would a long siesta for the whole family better suit this season?
• What times of day or week are you most likely to experience worse symptoms? Can you make any adaptations to your schedule so you can rest better during those periods?
• Even if life’s busy or chaotic, what could help anchor your days? Do you enjoy taking the time for breakfast as a family now you don’t have to hurry to get to school? Or do you all love going for a stroll after dinner now the evenings are long? Having some predictable routines and rituals can help kids navigate the unstructured summer months.

One you’ve figured out a good family rhythm, let your kids know in an age-appropriate way what they can expect. That way, they aren’t constantly asking that one question: “What are we doing today/now?”

Read more about your circadian rhythm and chronic illness, plus how you can work with your body clock, not against it. 

4. Master long-term pacing over the summer

One fun day out with chronic illness may be manageable, but summer vacation means weeks of higher demands on your body and brain, with less time to recuperate than you’d normally rely on. That’s why pacing your energy across the season, not just within each day, is one of the most important tools for managing this time of year.

• Think in terms of one week, not one day. If you know that Saturday will be a fun but tiring day with a family barbecue or trip to the beach, you’ll want to block Friday for preparations and Sunday for recovery. That might mean you have to say ‘no’ to other plans that weekend, prep easy dinners and ask your partner to take the lead with the kids while you recharge.
• Rest wisely. Let’s be real: lying down with your children nearby is not the same as a real nap or the undisturbed restoration you get when you’re at home by yourself. To give yourself a better shot at real rest, save your kids’ screen time for those times of day or week when you most need a break. Used intentionally, a beautiful animated movie or retro (offline) video game can be guilt-free pacing tools.
• Experiment with quiet time for the whole family. If your children are too old for naps, a daily quiet hour can be a valuable ritual during the summer vacation, especially if you struggle with sensory overload. Everyone retreats to their own (corner of the) room with a (comic) book, smart game, coloring supplies or Lego set; any low-stimulation activity that does not require your help or oversight. Younger children might need a little support, like a simple busy bag or a basket with toys that only comes out during this time of day, to get into the habit of quiet time.
• Have a backup plan for bad days. Inevitably, there will be times when your symptoms flare up just as your kids are screaming “Mom! Dad!” The last thing you need when you’re already overwhelmed, exhausted and in pain is figuring out how you’ll get through this. So try to have some coping tools and strategies prepped ahead of time, when you have the headspace for it. You could keep meals in the freezer you just need to reheat, save a sticker book, coloring pages or jig saw puzzle for these occasions, or create your own chronic illness crisis kit.

Get more advice on pacing your energy and coping with flare-ups of symptoms, as well as ideas how to entertain your active toddler when you’re sick, by clicking the links.

5. Support your kids’ independence

Summer vacation is a great time for children to learn new age-appropriate chores. Whether it’s putting toys away for littles ones, loading the dish washer for school-aged kids or vacuuming their bedrooms for teens, you can support your children’s independence and save some of your limited energy at once.

The only trouble for chronically ill parents is that teaching your kids new skills often does require some extra effort from you in the beginning. You can’t just hand your child a sharp kitchen knife for the first time and let them peel, chop and cut foods by themselves without supervision. But even relatively simple tasks like sorting and folding laundry, pulling weeds or mopping the floor can still raise a stream of questions like “where do I put this red t-shirt?” and “is this a weed or a plant to keep?”

So don’t be hesitant to ask their culinary grandma to teach your children some of her best cooking tricks, or let their uncle show them how to fix flat tires on bicycles. Tap into the talents and natural strengths of the people in your community if they have some time this summer. You could also invest in some tools to build their confidence and skills without getting hurt, like a learning tower or kid-safe peelers.

6. Make decisions simpler 

Do you get overwhelmed by all the small decisions you have to make on any given summer day? You’re not alone: it can be pretty draining to be the one with all the answers on what you’ll do today, what time you have to be there, what you need to bring, where to find the swim goggles/picnic blanket/cooler and what’s for dinner tonight.

The mental load of parenting is real, so try to reduce decision fatigue with turning repeated decisions into systems. What works, depends on your family situation, but here are some ideas of how you can simplify daily decision making:

• Make packing lists. Off-load your brain by having a checklist for what to put in swim bags and backpacks for day trips. No more running around frantically on bad brain fog days, wondering if you have everything you need. Even better if you can keep a somewhat packed ‘grab bag’ with all the essentials for a spontaneous outing, like sunscreen, shelf-stable snacks and your medical coping kit.
• Create a weekly menu, with a template you can easily adapt. This saves you precious time and energy making grocery lists, food shopping and cooking. Having a ‘theme’ for each day of the week (say Pasta Monday) gives you structure while still being flexible, bringing you spaghetti carbonara one week, but sheet pan gnocchi when you’re busy and tired the next week.
• Have a rhythm for activities. Especially kids who have no sense of time of day and week yet may long to know what you’ll be doing today, so give your family a little structure (that’s doable for you of course). Maybe weekends are the best times for fun outings, when the other parent’s home or other help is more easily available, while you stay close to home during the week. Or maybe your kids are expected to play independently during the mornings, before you all head out to the nearby park, library or stores in the afternoon.
• Stock your own coping kit. Think through what you might need to best manage your chronic illness when your kids are home all summer: a pill organizer with (emergency) medication, bandages, pain relief balm, a neck pillow, reusable water bottle, portable fan, sunglasses, phone charger, allergy-friendly snacks….? Write your personal essentials down in your notes app if that makes it easier to remember when you’re heading out the door.

Your future self will be thankful on hectic summer days!

7.  List some easy ideas for summer fun

Sure, you don’t have to entertain your kids all summer and a little boredom will spark their imagination, creativity and problem-solving skills. But you probably want to make some memories as a family too, within your limitations. That’s why it can be helpful to make a list with accessible fun summer activities that are suitable for varying energy levels.

Grab a big piece of paper and write down what you’d love to do together this summer:

• Go out for ice cream or make fruity popsicles yourselves.
• Have a water balloon fight, run through the sprinklers or go to the pool, whatever’s doable for you.
• Build a blanket fort for you all to read maze books and have a picnic in.
• Start a big summer project together, whether that’s building your own robot, growing veggies, making a large painting or finishing a 1000-piece puzzle.
• Hit as many local playgrounds as you can on one day.
• Explore the world with country-themed days, where you have croissants for breakfast, play jeu de boules, watch Ratatouille or Amélie and pretend you’re in France (or wherever you want to be in the world). Let your kids search for fitting recipes or create decorations beforehand to extend the fun.
• Have a lawn game competition with badminton, croquet, yard pong and giant checkers.
• Stay out late one night in the garden or balcony, eating roasted marshmallows, sharing (ghost) stories and looking up at the stars.

You can also fill a ‘Bored Jar’ with inspiration for independent play:

• Fold and fly paper planes.
• Make your own stop motion movie with Playmobil figures, stuffed animals and plastic dinosaurs.
• Blow off steam with jumping rope, throwing a vortex in the backyard or setting up a (safe) obstacle course indoors.
• Have a sidewalk chalk contest.
• Learn something new: hula hooping, magic tricks, a trendy TikTok choreography or digital art making.
• Get crafty: make your own cute keychains from shrink paper, draw your own comics or keep a summer vacation scrapbook.
• Join a summer reading challenge for kids and promise a fun (small) prize at the end!

You can find more accessible activities for all ages in ’21 Backyard Adventures for an Exciting Summer at Home. 

8. Round up the best summer hacks for chronic illness

Whether you’re struggling with chronic fatigue, painful digestive problems or dysautonomia, living with chronic illness comes with additional challenges. Every trick up you’ve got up your sleeves to overcome these obstacles will help you to enjoy these summer months more, so soak up all the useful advice from these articles:

• 10 Tips to Enjoy Day Trips with Chronic Illness
• 55 Ways to Have an Amazing Summer at Home with Chronic Illness
• 36 Inventive Ways to Play with Your Kids When You’re Tired and in Pain
• Parenting with Chronic Illness: How to Take Care of Your Baby and Yourself
• 30 Ways to Entertain Your Active Toddler When You’re Sick 

Conclusion

There’s no one-size-fits-all answer on how to manage your chronic illness when your kids are home all summer. What works for you depends on your unique health condition and family situation.

But finding a family rhythm, mastering long-term pacing and encouraging your children’s independence will all save you precious energy. Also don’t be afraid to ask for help and create a supportive home environment, including setting up systems for activities, meals and chores. That way, you will hopefully feel well enough to make some happy memories together with accessible, low-energy summer fun!

How do you take care of your body and your kids during the summer holidays?  

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