Raising a Family when You have a Chronic Illness

My Family at Disneyland Once Upon a Time ~

Raising a family is both rewarding and challenging.

The challenges are exacerbated when mom or dad has a serious/chronic illness.

I raised five children while battling a serious chronic illness. As well as having legal guardianship of non-biological children – and being a “mom” to lots of children/teens/young adults. This is our family!

Putting yourself first

This is a foreign concept to most moms. It seems that when we give birth a hormone kicks in that says not only does this baby come first, but so does everyone else in my life: spouse, parents, everyone – and I come last. It even happened to me before I gave birth – when I became a stepmom.

But I was sick and I had four young sons still living at home and a husband and legal guardianship of another child. I was putting all of them first and myself last. It’s what comes natural and it’s what good moms do. But even healthy able-bodied moms need to put themselves first sometimes. And for those of us with chronic illness, it’s an absolute must. 

I realized one day that if I didn’t start putting myself first, I wouldn’t be around to see my sons to adulthood. 

I had to learn to say no when I didn’t feel up to taking them somewhere. I had to learn to cancel plans when necessary.

I still made/make plans, keeping in mind, they may have to be cancelled. More on dealing with that later.

Take care of yourself. Rest when you need to. The kids can go outside or to a friend’s house or read a book. It’s healthy for kids to learn to entertain themselves.

They also need to do their own laundry. They can learn this very young, mine all did.

If it comes down to the kids needing new shoes or you needing something for health purposes, those shoes can wait. Your health can’t. Shoe Goo works great!

It seems selfish to put yourself first, but for those of us battling chronic illness, it’s actually a selfless necessity in order to achieve our best health possible – for the sake of our families.  

Put yourself first. It’s essential.

How much do you tell your kids?

It depends on how old they are. Don’t scare them with details they don’t need to hear. But explain why some days you can’t get out of bed or off the sofa or why you have to watch their soccer game from inside your car instead of the bleachers. Why you can’t always bake them a birthday cake and it has to come from a bakery or store. Why Thanksgiving dinner has to be store-bought already cooked. Explain why they need to quietly entertain themselves and let you take a nap. Naps are very important for our health.

For more info and tips on naps: ‘Naps for Mom’s Sanity and Health,’ click here.

Cooking and Household Chores

Doctors orders: no housework! If only insurance covered housekeepers for seriously/chronically ill and disabled people! If you can afford a housekeeper, do it! I had one when my kids were little, great investment. And even young children can do some chores to help mom or dad out and at the very least, pick up after themselves. Keep the chores for kids age-appropriate. And don’t put too much pressure on yourself to have an emaculate home. Clean enough to be healthy is my goal.

As for feeding the family, there’s times you can’t grocery shop or cook. I’ve had wonderful friends who’ve brought meals and groceries! I am forever grateful! I also used a grocery/meal delivery service and now there are so many to choose from!

Keep meals and snacks healthy, nutritious, and SIMPLE! Slaving over a hot stove isn’t in your best interest when you have a serious/chronic illness. It will take a toll. I will continue to post simple, healthy, delicious recipes. Stay tuned! 

For several years, Thanksgiving was “catered” by a restaurant or grocery store/super market. I just could not manage a feast on that scale anymore.  We had Thanksgiving at a restaurant too, but I like leftovers so I prefer to have it at home. So “catered” it was – with the addition one or two of my favorite recipes.

When my sons were old enough, they voluntarily took over and did all the Thanksgiving cooking! That meant the turkey was wrapped with bacon like a mummy! It was a fabulous feast!

All my sons have grown up to be great cooks due to having to cook when mom couldn’t!

Making the most of bad days

You’re going to have days that you have to cancel plans with your family. Days you can’t get out of bed or off the sofa – or you’re in the hospital. Healthy, able-bodied moms do guilt, so for those of us who battle health issues, it’s tenfold. So much guilt. Don’t do the guilt, at least try not to. Apologize to your children. Explain that you’re sick and need to rest.

With little ones, making the most of bad days means cuddle time and story time and movie marathons. Thankful for Disney movies! Lots of sofa time or time on the front porch or back patio. Your children can fetch water and snacks for you and perhaps make lunch of they are old enough.

We invested in a few backyard fire pits over the years, the wood/charcoal kind and a propane one. I highly recommend these for all families, health issue or not! They enhance family time a great deal! Even on bad days if nothing else, I could make it to the backyard in the evenings to sit around the campfire with my family for some wonderful family time! Sharing the events of our day, telling ghost stores, playing Mad Libs, telling jokes, playing charades, playing musical instruments and singing, etcetera. It truly is the small things in life! This was all very little effort and I was resting while having quality family time and making memories with my sons. Note: keep s’mores makings on hand!

That often led to watching shooting stars, campfire or not, watch shooting stars as a family especially in August during the big Perseid Meteor Shower. Trampolines are a great place for the whole family to watch shooting stars! Or lawn chairs or a blanket on the ground. If there’s too much light pollution where you live, if you’re up to it, try to drive to where there’s no light pollution in August to watch the shooting stars. Make it an annual event. Bring chairs or a blanket. Bring the fire pit!

I also joined a local museum/exploration park. There were times I could drive somewhere but not walk far or do much. We bought annual family passes and would go to our wonderful Turtle Bay Park, which is gated and safe. I could park myself on a comfy sofa or a bench outside and let my kids explore all the wonderful educational hands-on opportunities the facility has to offer while I sat and watched! They were “schooling” and having fun while I was resting. With four sons, we had the buddy system down. These places usually provide wheelchairs if needed. They’re part of a network so when we would go to my distance appointments, there were often other such museums/parks in the network we had free or discounted entry to! As well as when we traveled for pleasure! Check to see if you have one near you: http://turtlebay2.worldsecuresystems.com/documents/ASTCTravelPassport-Public-NOV2016-April2017.pdf

Making up for the bad days 

I always tried to make up for the times I was unable to do much. When I felt better, we got out of the house and went camping and all kinds of adventures! I’m no longer able to ski, but I sat in the lodge and had lunch and snacks and break-times with my family – and I snapped lots of pictures and videos of them as they skied down the mountain! I make the most of it given my limitations.

I went to all their sporting events – sometimes I had to watch from the car.

I tried to keep most plans a secret/surprise so that when plans had to be canceled, my children didn’t have to be disappointed. Disneyland was always a surprise! If I had to cancel, they never knew! 

I got a National Parks Pass, free to those of us who are disabled. We visited Nat’l Parks for the day and went swimming, hiking, picnicking, and camped a lot. Click here for info on obtaining a Nat’l Parks Pass.

Riding lessons are great for the kids and the chronically ill parent. If you can get your child into horse riding lessons and hang out with the horses during the lesson, it’s really good for the soul! They use horses for therapy for a reason! You will leave feeling better than when you arrived. And it’s free to just hang out with the horses! And your kids learn so much more than how to ride! They learn anatomy and science and how to diagnose and treat ailments! It has paid off when our pony, donkey, goats, and even our cats and dogs have had various symptoms! My kids are great at treating them or knowing when it’s time to go to the vet.

Note: Putting your kids through lifeguard school when they are old enough when you’re chronically ill can be the best thing you ever did. My son saved my life when I was in respiratory arrest. He has saved other lives as well. He was honored as a local hero.

Public School vs Homeschool – I’ve done both 

Whether you homeschool or not, turn your doctor appointments into field trips/adventures! Make it as fun as possible. More on that below.

I feared that homeschooling would be more stressful and take more of a toll on my health than sending my kids off to school everyday. But I found the opposite to be true.

In public school, you have all the germs that your kids bring home to you, putting you at risk. And then there’s all the stress of having clean clothes everyday, those vanishing socks, getting up at the crack of dawn to get everyone dressed, breakfast made and consumed, homework packed up, lunches made and packed up, and get them on the bus before they miss it! Or drive them to school with all the other stressed out parents dropping their kids off before the bell rings! I’m getting anxious and jittery just remembering those days. I’ve seen more than one child get hit by a car during drop-off and pick-up time at school! It’s crazy! Even in my small town! And then there’s all the homework stress! Not to mention the ridicule when you have to pull your kid out of class to go to your long distance doctor appointments because no one will be home when school gets out. I informed the school this would be a frequent occurrence and they were supportive and understanding and compliant. But then after the third time in as many months, that I had to pull them out for a day, I got a nasty letter in the mail explaining that my children were ‘truants’ and the authorities would be notified if I pulled them out for another doc appointment!

When you homeschool, all those situations and all that subsequent stress is eliminated. Well, except for the vanishing socks, not even homeschooling cures that! But you don’t have to set the alarm and you don’t even have to get dressed! And who cares if your socks match! You can make and eat breakfast and lunch at your leisure and with your children! There’s no “homework,” per se. No deadlines unless you set them yourself and then you can always adjust them as needed or as desired.

You don’t have to pull your kids out of school for your doctor appointments, which are field trips when you homeschool. I always made them adventures/field trips. 

I once told my ENT that I homeschool and my kids were in the waiting room and before I asked, he offered! He said, “then this just turned into a field trip, bring them in!” They got to watch him do a scope procedure of my trachea while he explained it all to them! They saw it all on the monitor! It was awesome! 

For the times you can’t bring your children into the exam room, provide them with entertainment, and for the car/plane ride, as well. More on that here.

More on turning doctor appointments into field trips/adventures/learning experiences, in my blog titled, “When Your Doctor Can’t Help You.”

Another perk to homeschooling: you can make skiing, riding lessons, lifeguard school, time spent at museums, exploration parks, nat’l parks, etcetera; part of your curriculum. Real life skills. One of my sons grew up to be a ski instructor for his winter job and works at a nat’l park the rest of the year. He trained for it throughout his homeschooling years.

When you homeschool, you can do it from your bed or the sofa.

You can do it

In conclusion, I want to say, whether you homeschool or not, you can do it. My kids gave me a reason to live, to keep fighting to live every single day. To make as many wonderful memories with them as possible. Chronic illness gives you the gift of not taking your future for granted, you take advantage of the time you have and you make to most of it, especially with your children.

They are also a wonderful distraction from health issues.

Here’s to all of us raising a family while battling chronic illness ♥️

Author: cconlowolsen

I’m a mom with a background in nutrition, teaching, child and human development, photography, health, travel, outdoors, animal rescue, mentoring, business ownership, cooking, navigating traditional health care and alternative health care, writing, and more. I have a chronic illness I’ve been managing for decades while raising a family, homeschooling my kids and enjoying life to the fullest. I want to share my experiences both good and bad, to help others!

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