Why This Everyday Object Symbolizes My Life as a Survivor

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For those with a front row seat to my life, it’s no secret I’ve struggled to find my bearings since completing treatment.

Like the still-standing ruins near the epicenter of an earthquake, delicate cracks — both physical and psychological — lace through my foundation. And though many are invisible to passersby, the damage can at times be overwhelming.

This has not been the victory year I imagined.

Ghosts of what I have endured haunt my present and make guest appearances at inopportune moments. They walk with me through empty surgical corridors and while reading patient reports. Sometimes these ghosts unpack their bags for an extended stay on particularly weighty calendar dates, such as the anniversary of a surgery or a diagnosis.

And they dance, tauntingly, each time I am asked if my battle has been won.

Active treatment may be finished, but my relationship with cancer will never be over. Or at least not in the way most people assume. What I could not have known when I began this journey is that survivorship has its own set of trials and perils.

With a required follow-up schedule charted out over the next 10 years, treatment acquired side effects and comorbidities such as premature menopause, osteopenia and risks of cardiomyopathy to contend with — combined with an ever-present possibility of recurrence — forces me to live with near constant reminders that “normal life” is something of the past.

Though not always discussed in “polite company,” I’ve learned that many cancer survivors experience some degree of Post Treatment Stress Disorder. Due to unique issues faced when diagnosed at a young age, survivors in this age bracket may have a more difficult time post treatment. In fact, a recent study published in a leading oncology journal found young people diagnosed with cancer have a nearly 60 percent increased risk of committing suicide or attempted suicide as compared with non-cancer population – with the greatest increase occurring the first year post treatment. Which is why organizations such as Stupid Cancer, Young Survival Coalition and First Descents      — all of which I am involved in to some degree or another — are imperative to supporting this population.

But embracing the “new normal” after cancer — even with help — is easier said than done.

In the Japanese culture, ancient ceramics artists once filled the cracks of their broken pottery with veins of gold. These Kintsugi masters believed that when something has suffered damage, it adds character. It is, in fact, the flaws that give these pieces their true beauty.

Since learning about this ancient art, I’ve become rather obsessed with the practice and the philosophy behind it. And recently, after a long and cathartic talk about life and the art of mending brokenness, my talented friend Marci, herself a ceramics master — though she would never describe herself as such — gifted me with a beautiful piece of her work that I couldn’t help but share.

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The lovely, botanical-inspired mug is laced in gold and serves as a tangible reminder that although I cannot erase what happened to me or ignore the damage that’s been done, I will learn to fill the cracks left in cancer’s wake with a mortar crafted from humor, honesty, grit and grace. It is all that I have — I’m fresh out of gold. But it is enough.

More importantly, the gift is a gentle reminder that perhaps there is still beauty to be found — which is something I needed to hear right about now.

This post originally appeared on My Life, Distilled

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When I Had to Explain to My Sister With Special Needs That Our Dad Died

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I lost my dad on a Saturday night, just as my husband and I were headed out the door to dinner with friends. No warning. I arrived at his home in time to see the paramedics trying to revive him on his kitchen floor and followed the ambulance to the hospital, where they gave us the official news I had been dreading.

He was gone. This man, so full of energy and a passion for life, was gone at 73.

Losing a parent suddenly would be devastating for almost anyone, but I didn’t have time to follow the “typical” grieving process. My mom had passed away eight years earlier. Now, without either parent, it was my responsibility to care for my sister, Wendy, who has special needs and had lived with our parents. The realization hit me as I sat in a dark waiting area in the back of the hospital where my older siblings and I had gathered.

Wendy was at home with family friends and had no idea what had happened to our father after he was taken away in the ambulance. She is deaf, cognitively delayed and has OCD. Although she was 42 years old at the time, she functions around an 8-year-old level. She adored our father. I would have to be the one to tell her the news and to figure out what came next.

Our older siblings are quite a bit older and two of them were out of the house by the time Wendy was 5 years old. She and I have always had the closest bond. She needed me to be strong and clear and patient with the many questions I knew she would have, questions I wanted the answers to myself. I wanted to break down and sob and wallow in the heartbreak of losing my father, but there was little time for that.

Kelly and Wendy Kids

The next day, Wendy left the home she had lived in many years and moved in with my family in our home 15 minutes away. My husband, Steve, was so incredibly supportive and our children, Annie, 16, Caroline, 14, and Theo, who was turning 11 that very day, enveloped their aunt in so much love. They put aside their own grief about the loss of their beloved grandfather so they could help ease the transition for the aunt they adored.

The mutual love and adoration between her and my children had always been a beautiful thing to see. Wendy had spent many weekends at our home but she had always been a “guest” in our home. This would be a whole new world and I had no idea if we were ready for it.

Establishing guardianship; meeting with case managers; visiting Wendy’s workplace for adults with special needs; talking to staff; figuring out funding; finding medications and the names of her doctors; going through her piles and piles (and piles!) of papers that she liked to keep in her jam-packed closet; bringing over what she needed while trying to pare down what she didn’t… These tasks consumed our lives for many weeks after my father died. My dad always thought he had plenty of time left and he was resistant to my requests for a meeting to discuss the future and what I would need to know to have a smooth transition with Wendy so, although I knew I was to be her guardian, I didn’t know much more than that.

Kelly and Wendy

Wendy was understandably confused and had many questions. Even though we had lost our mom earlier, the circumstances were different because she had a longer illness. Wendy couldn’t wrap her head around why our father had been cooking dinner one minute and was gone the next. How could anyone comprehend that?

I cried myself to sleep on many of those early nights, the burden of doing the best possible things for Wendy and the toll of her unrelenting questions resting heavily on my shoulders. She was used to being a guest in our home, and was resistant to some of the new routines we needed to establish now that she lived with us. It was an incredibly trying time and many days I didn’t know how things would ever begin to feel somewhat normal again.

Our home wasn’t large enough or set up in a proper way to accommodate Wendy so, on top of everything else, we had to begin house hunting. When we discovered there was nothing out there to meet our needs, we made the decision to build in a neighborhood about a mile away. Our kids wouldn’t need to change schools, all of our routines could basically stay the same and Wendy could continue at the workplace she loved.

As weeks turned to months, information was collected and executor responsibilities were handled and ground was broken for our new home, things started to settle down. It was a challenging, heartbreaking and exhausting year, but little by little, we started to have happiness and laughter again. There was a day that Wendy didn’t have questions about Dad. There was a day when she didn’t resist the new routines. And then another. Hope is a powerful thing and I started to have it.

My husband and kids were steadfast in their support. My sister, Chris, was a constant sounding board on bad days, she helped me through so much of those early months of paperwork and cleaning up our dad’s house and did many things that would lighten my burden a bit. My friends rallied around me and listened when I needed to vent. And as Wendy started to be more like herself again, we embraced the joy and she showed her passion for life. There is no better medicine than Wendy’s laughter, no better comfort than her hugs – and she is generous with both.

Wendy with bike

11 months after we lost my dad, we moved into our new home. A fresh start has never been more welcome and this one came with many unexpected bonuses. Our new home is on a circle full of other homes and our neighbors have welcomed and embraced us so generously. They adore Wendy, they are patient with her and they are so supportive of us. Many of them have learned some sign language and the many kids in the neighborhood consider Wendy one of their friends now.

She and I even started teaching a twice-monthly sign language class to several of the kids in the neighborhood and they are picking it up so fast! They play outside with her, go for walks with her and invite her over to color pictures or come to our house to play games and do art projects with her. Last summer, we bought Wendy a three-wheeled bike and many of the neighbors came out to see it when she went out for her first ride. She was thrilled! We feel very blessed to be here.

Out of a very dark time came a lot of hope and joy. Living with Wendy certainly has its challenges and we still have plenty of difficult days. However, the good moments far outweigh the bad. Her laughter always seems to hit the reset button just when we need it. Our children have learned so much from this experience, about how to support people through a difficult time and what it means to love unconditionally — something Wendy does every single day.

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Sometimes people ask me where I find the patience and strength to do this every day. My parents were a big part of that. Their commitment to Wendy was inspiring and they set a beautiful example. Having a support network is huge, from the people right here in our house to the extended family members, friends and neighbors who have our backs.

And, most of all, Wendy. Her beautiful, smiling face and her belly laughs and the way she reminds me many times a day that she is “my sister,” as if I could ever forget. Just when I think I am hanging by my very last thread, she will do something so sweet and loving. Wendy herself provides that strength most days without even knowing it.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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What the Doctor Didn’t Say Out Loud Meant So Much to Me

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We spent most of Good Friday in the ER, the first time we have needed a trip there since October. Eden had some scary symptoms during the week, and we needed to see if they were a part of the “normal” disease progression or an infection that would require antibiotics.

We try to stay out of the hospital if we can; we prefer to be home and the hospital has too many germs! And often, an ER trip means visiting with an attending who doesn’t know us, and requires lots of negotiating to be able to bring her home and not admit her.

When our attending walked into the room, I said, “I’m so glad it’s you!” It was the same attending we had in October. I was so happy because I knew that she would be very thorough in her examination, and I wouldn’t have to fight to keep Eden from being admitted.

She said, “I know you! This is my favorite family. I know I am not supposed to have favorites, but you are my favorite!” She did tons of labs and an x-ray, and we waited for the results to come back. She sent for more bloodwork after getting the initial results, just to make sure nothing was missed.

After all the initial results were back, she came into the room and sat with us. “All the results are good. The kids with asthma are having a harder time right now, so that could be part of it. But it is also likely it is from her disease progressing.”

That is what she said with her mouth. The doctor-response that she is required to give: let me know what is going medically, and that there is nothing we should be doing differently.

But what she said with her eyes, I won’t forget: You are an amazing mother. She is a beautiful little girl. This is not fair. I am so sorry for your pain. I am so sorry I can’t make this better. I wish I could fix this. I am so sorry I can’t.”

That. What she said with her eyes. That is what meant so much.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected]  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How I Try to Respond When People Ask ‘What’s Wrong’ With My Daughter

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I read this question online the other day:

As a parent to a special needs child, do you get offended when people ask “What’s wrong?” when they see a trach or something out of the norm with your child? How do you react to the question?

I admit, I still bristle at the tactlessness in the question, even though adults should know better. (I don’t mind tactlessness in children; in fact, I expect it and welcome the chance to educate a young mind. But I digress.) When confronted, though, I try to keep in mind something my father has told me: “We’re not born knowing these things.”

This was an oft-repeated phrase. Whether it was in regard to my embarrassment in asking him something I didn’t know or something I thought someone else should know, his response was the same: “We’re not born knowing these things.” This is a piece of my father’s wisdom I try to carry with me. When he told it to me, it never applied to anything that had to do with special needs — but it applies here all the same.

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People have made being offended an art form. Some people seem to look for ways to get offended just so they can rant, complain, even be compensated in one way or another for the injustices (real or imagined) done to them. To be fair, there’s probably much I could consider offensive. But I prefer to spend my energies elsewhere. I find I get a greater return if I focus on being positive and encouraging my daughter to be friendly in response to rudeness.

This is, of course, an ideal. It’s something I strive for, but I don’t always succeed in doing so. We are, after all, only human. Sometimes it’s difficult (oh so difficult) to strike a balance between the people we are and the people we want to be. Emotions get in the way; we’re not always the logical creatures we pretend to be.

But the point is, we’re always striving. We’re always working toward our betterment. Every experience can teach us, if we let it. And if we’re not willing to educate others, how will they learn?

This post originally appeared on eichefam.net.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How to Win at Autism ‘Snakes and Ladders’

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During a recent conversation with my mother-in-law, I lamented how our experiences with autism often feel like a constant go-round of “two steps forward, one step back.” What I mean by this is that one day my 5-year-old son will astound us with a new skill we were told would take ages to develop (riding a bike, for example), and then a “stim” (stimulatory behavior such as jumping, vocalizing, chewing on clothing, etc.) will pop up seemingly out of nowhere and significantly interfere with his learning. We’ll be smiling to ourselves that it’s been months with no seizure activity, and then, soon after, he’ll need to be hospitalized for pneumonia. Or perhaps we’ll get a call to find that we have finally been offered a spot in a particular therapy, but it will also entail additional appointments, costs, and/or juggling of medications and schedules.

When it comes to autism, it seems we live in a permanent state of breath-holding, other-shoe-dropping apprehension. The last few years have been a game of “Snakes and Ladders;” no sooner do we feel like we’re advancing in the social-cognitive-language developmental game, we feel as if we are hurtled back down the snake. This game, of course, is no game at all; it feels incredibly frustrating, and parents like us are anxiously aware we may never reach that last square on the board, where our child becomes an independent adult. 

Day 7 AAEM

The picture above describes many of these moments in the autism game of Snakes and Ladders. Parents finally get respite care to take a night off only to return to learn your child had a seizure or meltdown while you were out. Your child has an amazing aide at their school, and months later you may learn she’s heading off on maternity leave. Your kiddo gets invited to a playdate, and the mother of the other child mentions casually about (another) birthday party from which your child was excluded. You finally have your child’s therapy schedule sorted out, and, dammit, a new therapist calls in sick (again). The list goes on and on of often daily snakes and ladders. 

So how do we win? How do we push on in the face of all of these progressions and regressions? The back and forth. The truth is that we must change the way we think. We cannot look at autism as a linear developmental game of Snakes and Ladders but as hierarchical — as a pyramid. I now do my absolute best (and I fail on a lot of days), to imprint Maslow’s Hierarchy of Needs into my thinking. I want my child, within the parameters of this pyramid, to learn as much as he can, become as independent as he can, while achieving the highest level of self-actualization possible. 

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I, along with my family and team of therapists, will do what it takes to support my son, Quinn, in achieving his physiological and safety needs. We will nurture belongingness and acceptance in our family, schools and society. We will help Quinn cultivate strong self-esteem and feelings of accomplishment, and we will not allow him to measure accomplishment against socially constructed notions of success. Quinn and his circle of love and support will help him define his own accomplishments. We will celebrate every single one. 

If he regains language, great. If not, we will nurture alternative communication methods. We will greet every skill development challenge with this same loving adaptation and support. In doing so, we’re hopeful he will achieve the highest level of self-actualization possible; and everyone, no matter what their ability or challenges may be, can achieve these objectives. This is a game everyone can win. 

This post originally appeared on Project Bearings.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My Daughters Are on Opposite Ends of the Down Syndrome Spectrum

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Every single day I hear references to someone being on the spectrum. Being “on the spectrum” refers to a person having autism, but for a while now I’ve come to believe it might behoove the Down syndrome world to start talking in terms of a spectrum as well.

There are so many variations of how Down syndrome manifests itself in a person. Cognitive and physical abilities can be affected in differing degrees based on many factors. One significant factor is the many associated health conditions that individuals with Down syndrome have an increased risk of being born with or developing at some point in their lives. Some will have significant health concerns requiring surgery or other treatments, while others may only have minor issues common to Down syndrome.

Achieving certain life skills may come easier for some and yet may be unattainable to others just by the way their particular bodies reacted to the extra chromosome. All of the aforementioned factors can then be further compounded by additional diagnoses such as autism, sensory processing disorders and apraxia, just to name a few.

These extra diagnoses usually bring on additional and significant challenges which impact how the child or adult speaks, behaves, socializes and learns.

I’ve read many times how other parents who have a child with a dual diagnosis of Down syndrome and autism feel like they don’t fit in anymore at Down syndrome events or meetings. They believe there is too big of a difference between their child and other children who just have Down syndrome. They deal with things like bigger delays, complicated behaviors, lowered potential and intermittent or nonexistent stereotypical Down syndrome personality traits.

We recently attended the grand opening of a GiGi’s Playhouse near us and lasted all of about 15 minutes because the noise level and the crowd were so overwhelming to my daughter, Lily, who has both Down syndrome and autism. Call me paranoid, but I also sometimes sense a hint of fear from parents holding their cute, chromosomally enhanced babies when their gaze lands on Lily. Lily, who on this particular day is barely able to walk because she’s so busy trying to cover her ears, dodges bodies, averts her eyes and mutters nonsense while deeply cringing from the chaos of the grand opening party. Autism can be terrifying to people.

I’m on both sides of the coin. My other daughter, Dasha, just has Down syndrome, along with a few minor health issues that are common with Down syndrome. And then there’s Lily, with her numerous diagnoses stacked up to complicate all aspects of her life.

She has five: Down syndrome, congenital heart defect (repaired AV-canal), autism, a sensory processing disorder and Ehlers Danlos syndrome. I’m considering adding a sixth o, apraxia of speech, to the mix after seeing similarities between Lily and her brother who was just diagnosed.

I find myself struggling to fit into the Down syndrome world as the girls get older. Dasha seamlessly fits the mold, and I’m often saying she could be the poster child for someone with Down syndrome. But Lily doesn’t.

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Dasha
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Lily

It took our daughter Dasha coming home for me to see the differences between them. After adopting a child with Down syndrome who lived in an orphanage for the first 5 years of her life, one of our biggest concerns and fears was possible institutional effects. Institutional effects (abuse, neglect, little to no affection) on a child can often mirror autism traits. “Institutional autism” is what most people call it.

I remember reading books, blogs and emails about institutional autism symptoms before and after Dasha came home. Slowly, I came to the realization that Lily had many of them, yet Dasha, who was adopted, did not. After Dasha had been home a couple of years, I started embracing the idea of Down syndrome coexisting with autism in Lily. They’ve become intertwined, and I believe they help make her the unique person she is and was meant to be.

So you will now hear me say when discussing my daughters’ diagnoses that I have two girls and they are on completely opposites ends of the spectrum of Down syndrome. It’s OK that they are nothing alike, and it’s time to recognize the diversity in the Down syndrome population. We can’t just champion and promote the ones who are more verbal, more social, more successful or more like you than different.

Individuals with Down syndrome make up an amazingly colorful spectrum and they’re all equally beautiful inside and out.

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My girls giving their daddy some love.

A version of this post originally appeared on Our Version of Normal

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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