These hacks make summer break easier for me as a chronically ill parent
With 2 active boys, I've had to learn a few tricks over the years
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For me, summer break is both the best and worst time of year as a parent living with rare and chronic illnesses. I have wild and energetic 10- and 11-year-old boys who are starving for their well-earned break to begin. But the daily need for activity and stimulation can be exhausting and overwhelming.
I’ve always suffered from medical issues stemming from lupus and hypermobile Ehlers-Danlos syndrome. But I still lived a pretty normal life — working full time, exercising — until 2018, when I developed immune thrombocytopenia (ITP), which causes my immune system to attack my platelets. It slowed me down and added an extra layer of health complications.
Then, in 2020, I nearly died when a bout of COVID-19 triggered an ITP flare and activated atypical hemolytic uremic syndrome (aHUS) and thrombotic thrombocytopenic purpura. Since then, my life has been completely different.
My summer parenting hacks
My 11-year-old has grown 6 inches in six months and is nothing but lean, tall muscle. My 10-year-old hasn’t grown as quickly, but he’s my spicy little wild card who’s energetic and hyper. And then there’s my fiancé and me: We’re both medically disabled, tired all the time, slowly losing muscle mass, and always in need of a nap. Not the best combination.
Summer means more time at home for both boys, providing more food for them, and hearing the constant echo of “Hey, Mom …” I understand that it’s disappointing to have parents who can’t be physically active. But I’ve learned a few tips and tricks over the years.
First, I never tell the kids about any plans. My illnesses and comorbidities can be very disruptive and unexpected. Some days, I wake up feeling OK, but on others, I can barely walk. If I tell the boys we’re going to the beach on Friday, they’ll expect to go. But I might wake up Friday and be too sick to function. This not only disappoints the boys but also erodes their trust in me. And that’s the worst feeling in the world.
So, my fiancé and I may discuss plans with each other, but we don’t tell the kids until we wake up that day and know it’s happening. Telling the boys about events right before they happen also makes us seem spontaneous and fun.
The next trick I’ve learned is rationing snacks. I can’t just buy snacks and put them all in the pantry because these boys will consume anything and everything that’s available, especially if it has sugar. I do extreme couponing, which offsets much of our food costs, but these boys eat more than a small country! So, every night, I refill the pantry with two to four of each snack for the next day. This rations out the snacks and makes them last weeks longer.
Next is something simple: location. Travel time can make adventures hard for me, as spending multiple hours in a car or traversing airports can ruin my pacing and exhaust me before we’ve even reached our destination. After a heavy travel day, I sometimes need a day or two to recoup.
So we decided in 2024 to move to Florida. It’s warm and sunny (which is great for me as someone with anemia), there are tons of activities for the kids to do, and any larger attractions are within two hours. This includes airports and cruise ports, which makes it easier for us to travel. We also lucked out and found a home on a lake, which gives the boys plenty to do.
My final summer hack is loading up on surprises throughout the year. As an extreme couponer, I shop often and am constantly looking for deals on things the kids can do at home: water balloon sets, super-soaker water guns, unusual snacks, 3D puzzles, footballs, fishing gear, etc. I hide these items and bring them out one by one during the summer. They think it’s a cool surprise, and I save the day.
Summer can be stressful, but it doesn’t have to be. Quietly planning, rationing, and developing systems can make this time fun and manageable. Keeping my boys’ minds and bodies active is key to a successful break that doesn’t run us parents into the ground.
Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.
