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Miles Smiles (My Heart Half Heals)

Mothering a severely disabled child with love

A year ago today, I awoke at 5 a.m., and vaguely remembered that it was my birthday.

It was also Friday the 13th, and I was feeling lucky. I slid out of bed for some “me time” before getting the boys to school.

Reclined in front of a roaring fire with coffee and the rising sun, I asked myself: How can I continue trying to be the best version of myself possible, this year and beyond?

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As Olivia Newton-John so aptly wrote after beating cancer, the next phase after learning to survive is learning how to thrive.

I used to thrive, I told myself. Could I move beyond survival mode, as a parent-caregiver, and back to thriving? It felt like a pipe dream.

Not with day-to-day obligations that are still so challenging and unpredictable, when I’m so often on overload and overwhelm, I thought.

Not when so much of being Miles’ mother is about taking one step forward and three steps back.

That morning, I set my sights. I could hear my soul advising me to get radical and somehow achieve this lofty goal. Stop waiting, it whispered. I didn’t know what it all meant at the time, or how it would turn out. But it felt important, and I listened.

I made this year what I now call “The Year of Me” by engaging in extreme acts of self-care. I did things for myself that I had wanted to do for years. Some of them were just plain fun self-discovery, and some were work with payback. All had a big impact on my overall happiness.

What exactly did I do?

I doubled down and simplified my schedule in all possible ways. My lack of adequate resources required me to take a hard look at my overall schedule. I had to somehow reclaim some time. I vowed to prioritize family, paid work, and respite/rest as priorities. That meant I had to make hard decisions about other obligations. As someone who loathes quitting anything, this was very challenging, but I did exit several volunteer activities.

In hindsight, I don’t know how I had fit them in, with all that I have going on at home. I had been overbooked helping others when there wasn’t enough of me to go around for helping myself and my family.

I did a massive purge of unneeded material possessions. It had become obvious to me years ago that our family owned too much stuff to effectively manage in our home. A deeply ingrained Depression-era mentality about keeping things hadn’t helped. But I was so tired. How could I ever muster a purge, to simplify things?

This journey had actually been several years in the making. On summer vacation two years ago, I had treated myself to Marie Kondo’s best-selling book, “The Life-Changing Magic of Tidying Up.” Her bold ideas resonated and took root. Every month, my heightened sensitivity to the negative effects of having too much stuff grew. (Interestingly, this was not the case with those around me, so this was very much my own personal journey.)

Finally, I became so frustrated with the clutter that I had no choice. I began following Kondo’s methodical approach, to ensure success. I asked myself hard questions about what we truly needed as a family. The answer was, not nearly as much as we thought.

With gratitude and some fear, I filled countless boxes with donations. It took months and months. Slowly, the best version of our home and our trappings started to emerge.

I even found my courage to sort through mountains of old mementos that had choked an entire corner of our master bedroom for years. Last month, sick of the sight, I boycotted other plans and spent a Sunday afternoon reading all those cards and letters. So many people had taken the time to write to me over the years, and I had forgotten much of it. Some of the notes (especially those from creative friends and coworkers) were just plain clever and hilarious, and had me laughing out loud. That impromptu ritual made my heart swell with gratitude and love. While reliving and cherishing all the sentiments, I was able to choose a few to keep, while letting most of the rest go.

The calmness that has followed for me, since kissing so many material things goodbye this year, is palpable.

I got rid of all of my clothing, and started over. Finding myself in tears at having “nothing to wear” while getting ready for work was a great motivator. My closet was full of items that didn’t fit or flatter, especially since having babies. It was full of my favorite colors, but they were not my most flattering colors. My body had changed, and it often wasn’t clear how to best dress it anymore.

My nonfunctional wardrobe had been a source of subconscious stress for so long.

Purging all of the clothing that hadn’t been working for me, using Kondo’s method, was admittedly scary, because it meant purging my entire wardrobe. It was also unbelievably liberating.

I used online resources to achieve breakthroughs about my personal style. There I discovered my best colors, and determined my body type, both for the first time in my life. These were things that I had been dying to know for years. There were even a few surprises from my certified color consultant: my chic black habit was all wrong! After the initial horror, I fell in love with the beauty of my new smoky palette, and slid those black items into the donation bag also. Meanwhile, I learned how to identify and dress my “apple” body type in a way that honors and flatters my curvier mommy self.

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I honestly couldn’t believe my own bravery. I was dead-serious about doing this right. These acts were all gifts to myself, and this commitment had taken on a life of its own.

I slowly, thoughtfully sourced flattering new clothing. Once I heard about the capsule wardrobe concept, I was smitten. It’s about limiting yourself to flattering wardrobe basics that all work well together.

After learning my best colors and styles, and ditching most of my closet’s contents, I carefully shopped at several online websites. Much of what I found was gently worn, discounted designer wear. I also purchased a few new pieces to fill in true “wardrobe gaps.” In the process, much of my shopping confusion evaporated, and pretty much all my compulsive shopping habits (read: buying clothing when I was sad or lonely) disappeared.

At least half of each clothing order was returned because it wasn’t flattering enough, but I didn’t mind. I was taking a radically different approach. Each piece needed to be great on me, or it had to go. “Nothing but fabulous” had become my new mantra. Shopping online enabled me to stick with the search for months, without compromise, from the comfort of home.

Armed with professional guidance, I had finally gotten smart, and very fussy, about what I would wear.

I chopped off my hair into a more sophisticated ‘do. For me, this meant ditching long hair and returning to my go-to “bob.” It’s a cut that feels more stylish and sophisticated to me, and also more practical as a caregiver who gets her hair grabbed and pulled daily. Returning to the only short style that I could ever pull off with my natural curls has made me feel more adult, and even sort of cool again!

The symbolism of the bob, rooted the original feminist “Flappers,” also felt very empowering to me as a strong, expressive woman nearing middle age.

I rewarded myself (and my family) with the functional beauty of a few timeless upgrades for our home. Achieving my vision for certain lacking parts of our antique home’s interior has required a lot of patience. It has taken years to feather our nest beautifully, and it has been done piecemeal as budget and energy have allowed. I have focused primarily on beautiful design, quality, and simplicity, finding great deals whenever possible.

The showpieces are our gorgeous new soapstone and white-marble kitchen countertops. My heart now sings every day when I am in this more pared-down, beautified workspace. The timeless slabs remind me of worn chemistry lab tables and old European art museums. They make the routines of kitchen work almost pleasant. They will earn their dings and their character, just like I do.

Splurging on the stone was the big final transformation for the kitchen. It was a dream come true for the room where so much hard work and commitment and love happens every day.

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***

A full year later, I’m still not finished. But I could not put a price on the positive changes I’ve seen in myself.

The Year of Me has given my spirit flight.

Indeed, I have found myself wishing that I had done it years sooner. But I can see that the timing was part of the journey. This is the year that I was ready, and no sooner. It was the exact right time for me, when the stars aligned to light my path.

The positive effects of the Year of Me have already radiated into other areas of my life, making me feel more calm, committed, and able to focus on what is truly important. My house will finally be cleaned out and organized this year, which is astounding. Living as more of a minimalist going forward, I can then focus on the important stuff—which is not about things. Rather, it’s about more quality time for loved ones and respite and creative self-expression. And, sometimes, with a child who requires total care, it’s about more naps.

As I celebrate another birthday today, I especially relish this new dawn. I give thanks for this accrued wisdom to reclaim my self-love with transformational self-care. We all deserve to pepper our days with bits of happiness and pleasure. Unburdening ourselves to make that truly possible is worthwhile work. Thus freed, we can thrive, even in the face of adversity.

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What would you do for yourself, in a Year of You?

 

 

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