How Simplicity and Minimalism Helps in Life With Dup15q


Simplicity and minimalism are ideas that I’ve been reading a lot about for almost a decade now. I’ve always found these ideas attractive but never been spurred into action by what I read. If you look up simplicity, you will find people talking about how they simplified their schedule or their diet. If you look up minimalism, you will find people talking about getting rid of possessions and living with less. I found myself reading about these topics even more the last few years. I think I was looking for a way to survive.

Everyone struggles with managing their time, their health and their work-life balance. Everyone struggles with occasionally feeling overwhelmed. I struggle with these things too. Only, there are a few differences. I struggle with getting enough hours of sleep at night because my daughter requires around-the-clock care. I struggle with giving my son the time and attention he needs because his sister takes up so much. I struggle with feeling overwhelmed because on top of work, family and household obligations, I also have to juggle multiple doctor’s and therapy appointments, insurance phone calls, on-going training with my daughter’s team at school, administering and managing medications and daily care.

I get overwhelmed easily. And all the time. Something had to give. And something would give.

It all started with the toys in the garage. Our beautiful daughter, Morgan, was not yet 2 years old. Every time I took out the trash, I would pass by all of Kyle’s old push toys and mobility-type toys I stored there. I held onto these toys when Kyle, our oldest, grew out of them thinking I was saving them for our next little one. There was a pull-up toy and a big Mickey Mouse car that Kyle rode all the time and many other toys Kyle used once he had started walking. He started walking when he turned 1 and has been keeping me on my toes ever since. Once Morgan was born, I held onto the hope that she would eventually use these things, despite the rare chromosome disorder, Dup15q syndrome, that she was born with and all the medical problems that went along with it.

When I was pregnant with Morgan, I looked forward to seeing her play with these toys. And when Morgan was just a few days away from her 2nd birthday, I was reminded of how different things had turned out every time I passed them to take out the trash.

Morgan’s 2nd birthday came and went. We celebrated together with family and friends. I felt grateful for getting this far with all the challenges we faced with keeping her healthy, and I felt a sense of peace as the gradual acceptance of her limitations sank in.

Not long after her birthday, I was taking the trash out and instead of just passing by the old toys, I just stopped. I just stopped. I stood there, holding the garbage bag, staring at the Mickey Mouse car.

She is 2 now. She can’t use these toys. She can’t sit up yet. Even when she gets strong enough to use these toys, she may simply be too big for them. Will she get strong enough to use them? Yes, of course she will, don’t ever think otherwise. She may never be able to enjoy these toys like Kyle did. She is simply on a different path. I really should let some other kid get the chance to enjoy these toys.

 
After standing there for what seemed like a long time, I finally continued on to finish the task at hand. By the time I got back in the house, my mind was made up and I had a plan.

The following weekend, I arranged for Danny to keep an eye on Kyle and Morgan. I went into the garage and began loading the car. The Mickey Mouse car was loaded first, then the small scooter, followed by the push truck, the pull-up toy and many others. I took all of it to a gently-used second-hand store called Kid To Kid and sold whatever they were willing buy. Then I donated all the rest. It took me less than an hour to get rid of it all, and I cried all the way home.

The drive home was emotional. I felt relieved. I felt lighter. Like a huge weight fell from my shoulders. I also felt sad. By getting rid of those old toys, I was admitting to myself that Morgan’s journey was completely different than anything or anyone could have prepared us for. I grieved for all the things that were hard for Morgan to do and all the struggles she was going to face. But I also felt lighter, relieved…

Why had I held on to those toys, and ideas associated with them, for so long?

 

Soon after, I began examining other things in our garage. What was I hanging onto for a future that may never be realized? What was sitting there, waiting for a someday that may never come? Did I really need this thing, or that thing, or the thing I used once but never again?

I read a book, called “The Life Changing Magic of Tidying Up” by Marie Kondo. This book is more about organizing your entire house, but I found it to be even more than that. I’ve liked the idea about minimalism for a long time but never had the tools to incorporate it into my life. This book gave me those tools.

In the beginning of the book, the author has you sit down and write or draw what you want your life to look like. I sat down to do this exercise, and the overall theme I came up with was to simplify. I knew there were things I could not change. But what could I change? I wanted to simplify everything. Starting with my belongings. If it didn’t add something to my daily life or somehow make my life easier, I didn’t want it. I wrote down where all my time and energy were going and what I actually wanted to do with the precious little time I had to myself. I got a real clear idea of what my life looked like at that moment and what I would like it to be. Simpler.

Fast forward six months and I had gone through and made a decision on every single item in our home. Of course, I respected my family’s  space and decisions on what’s important to them. I got rid of so much excess, and I didn’t even think I had that much to begin with. And every time I did, I felt a little lighter, a little less overwhelmed. My kitchen is simpler, my closet and drawers, Morgan’s medical supplies. My mind is more clear, and I can better manage when I’m feeling overwhelmed. I feel lighter and more hopeful. And cleaning is so much easier. I’ve done more research on minimalism and incorporated a lot of the ideas when it comes to new belongings and what we bring into our home. And down the road, when the time came to move, it was a lot easier.

I didn’t stop there. I simplified everything. I began editing my commitments and letting go of the things that just aren’t as important as I once thought they were. These new concepts even bled into all my relationships…f or the better.

And it all started with Kyle’s old toys in the garage.

brother and sister playing with buzz lightyear

Making these changes and embracing the ideas of simplicity and minimalism has helped me cope with all the things I can’t control. Like when Morgan needs to be rushed to the Emergency Room yet again.

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