Recognizing your potential

 

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Saw this picture at Hobby Lobby and immediately knew that I wanted to pick it up as a surprise for my oldest daughter. As a young woman growing up with Aspergers she faces many challenges but she is so strong and determined. She’s an amazing 12 year old!
I didn’t get to purchase it because the kids were with me that day but I think this might be her next special gift from dear old Mom.

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Literal translations

Today my son was elated. Earlier in the week he had placed a very special stone into his pants pocket and had forgotten about it. That is, until I had removed the offending object from the laundry, pitched it back out into the driveway and washed his grass-stained, faded blue jeans. He was crushed when he remembered that he’d left the stone in his pocket and didn’t find it in his freshly washed and neatly folded britches.
That’s where today’s excitement comes in:

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“Look Mom! I found it–GOD, MY ROCK!!”

That’s sound logic

“Why doesn’t Daddy wear tank tops? You do know that if he would wear tank tops we could move to Texas, right?”

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Changing the face of victory

I’ve waited to say something because whenever I start to type out the words, they seem to mean nothing. How do you announce to the world that someone you love has passed away? Is it even possible for a text or an email to convey the weight of a message that is so oppressive? A call? Could a telephone call even begin to translate the range of emotions, the depth of implications that have suddenly become your new reality? To share the information with friends and family via Facebook seems incredulously disingenuous. And yet here we are, living in this modern world where details are communicated instantly, and concretely. In black and white, with such finality.

I know that this is the world that I live in. I know that we communicate in real time. That we can share updates and changes almost as quickly as they are happening. But it didn’t seem right. I guess there was a part of me that was unwilling to let go. I was holding onto the news that my father-in-law had passed away, hoping against reason that maybe he wasn’t gone after all. Could this all be one bad dream? But no, this was in fact the truth. Dana Kunkel wasn’t coming back to us this time. He was really gone.

dana and chris

I suppose that this weighty truth didn’t really hit me until we were travelling back home, nearly five days after his passing. My husband rode in the white car ahead of me with his brother and my son. I was driving a rental car and my three girls were chatting and laughing in the back seat. Around the World in Eighty Days by Jules Verne was playing on the car stereo and I silently sobbed in the drivers’ seat of the little Nissan from Wilkes Barre to Scranton. Sure, I had let a few tears fall here and there when we heard that he might not survive his most recent bout of failing health issues. My pulse had quickened each time my mother-in-law’s phone number had  appeared on our caller ID. My heart would tighten in my chest each time we entered the hospital, each time we entered his room, thinking it was our last visit. I had shaken when Dana made the decision to enter hospice care, unable to catch my breath, my head bowed in disbelief. I hugged my sides tightly in a weak effort to contain the overwhelming grief that threatened to spill out of my heart and sadden my children.

I would dare to say that I am not alone in my sadness. There are billions of people who have experienced the pain of loss before. So very many who have felt that pain much more keenly than I. After all, Dana was my father-in-law. We only saw each other once a year, maybe twice if weather and finances favored us. To express my anguish at his passing felt selfish and unreasonable. Selfish as it may be, the sorrow comes in waves and hints at lingering forever.

It would be a shame to write about my father-in-law’s passing without telling of his noble battle to live. With humble words, I will venture to share with you a glimpse of the incredible man that I knew and loved. Rest in peace, Dana. You will never be forgotten.

“Blue Baby
Tongue Tied
Rye Neck
Congent. Heart Dis.”

Dana Gay Kunkel entered this world facing incredible challenges. His mother had contracted German measles during her pregnancy and it was unclear whether the disease would have ill consequences on her unborn child. After his birth, Dana’s outlook was grim. “Two days. Two days at most.” The infant boy was not expected to survive. It must have seemed a tragic joke when the nurse presented his mother with a baby book. Something that was meant to record his birth and progress through infancy and toddler-hood would surely only serve to record his death. Dana’s mother put the book away without a single entry.

I cannot begin to imagine the response Dana’s mother would have had. The year was 1946. Only 20 percent of children born with a heart condition would live to age 16. If this baby did survive, he would be frail and have a pitiful childhood. Facing the dreary outlook presented to her child would she have spent every moment cradling the little boy as if he were a special gift from the heavens? Would she have distanced herself from her son and preoccupied herself with the six children she already cared for at home? I am sure that she would have looked at the clock with every passing hour, dreading the moment of his death as it crept stealthily, surely, upon him.

Dana was a fighter. When he was two months old, his mother began to pen short entries into the baby book she had been given at the hospital. She recorded his baptism, the gifts he had received. She jotted down his weight and length from each of his well baby visits. At three months of age he hadn’t gained any weight from the previous month. Doctors never gave his mother hope. Optimism was a luxury that they could not afford to his family–not in his condition.  “The baby will never survive to see his first birthday.” Again, she would lay down her pen, set aside her hope, and wait for her son to die.

But the little fighter persisted. At ten months of age, Dana finally gained a pound. For seven months, his tiny frame had clung to ten little pounds with tenacity. When he reached eleven pounds, his mother began filling in all of the dates she had missed. Scrawled pencil marks fill the lines, “Lifted his head at 3 mos.” “Begins to creep at 9 mos.” I can only imagine her guarded optimism. The celebration his family must have had when the child reached his first birthday. The breath of relief his mother must have sighed.

I have seen photographs of Dana looking very much like an ordinary little boy. One would have never guessed that his mischevious little smile hid a grave, life-threatening condition. Time and time again, Dana would beat the odds. Time and time again he would survive.

When Dana was sixteen years old, his parents were told of a risky operation that might give their son a chance to survive into adulthood. They would have to travel to the big city of Philadelphia, hours away from their small hometown, and there was no guarantee that their son would survive open heart surgery. His father was skeptical. At a frail 80 lbs., their son seemed an unlikely candidate to survive a procedure with such slim margins of success. His mother pushed towards to hope of seeing her son outlive her. With trepidation and doubt, the parents decided to leave the decision in their son’s hands.

Without hesistation, Dana made preparations for his journey to Philadelphia. His older brother was worried. “What if you don’t make it, Dana? You know you could die.”

“I would rather die than live like this.” Our fighter had made his decision.

Dana survived that operation, put 100 lbs. on his previously frail frame in the next year and then went on to college. He married Sharon, a “cute” girl and they began a life together. They had three sons and made some incredible family memories. Just ask any of the boys about their camper vacation. Dana would go on to work long and hard hours in spite of his heart condition, determined to give his children the very best life he could provide for them. “I may not have been there a lot, but boy did we give them a great Christmas!”

Dana was full of wit and sarcasm. Once, his middle son asked about the ghastly scar that streaked down Dana’s chest and twisted around his side, stretching onto his back. Without skipping a beat he responded, “Shark bite.”

His words could be cunning and his temper explosive. I’ll never forget the Thanksgiving when Sharon answered the phone during the big family dinner. There was no one on the line. The phone rang again and Dana told Sharon not to answer. After several rings she answered. Dana jumped up, yanked the phone out of the wall, stormed upstairs to take the other telephone off of the hook and stomped back down to the dining room table. “Now. Let’s eat. Pass the creamed corn.”

But there was a gentler side to Dana that he kept guarded. The neighborhood children that were always welcome in his home looked to him as a father-figure. Dana and Sharon seemed to attract the broken-hearted, the misfits. Make no mistake, Dana was one cool cat. He rocked the Adidas and the Reeboks and  Nike like no other. He had the latest and greatest cool gadgets. He wasn’t lame by any means. Dana just accepted everyone as they were. He earned people’s respect and gave respect where it was earned. He was a sincere and loyal man.

Cardiomyopathy at 50. Then a heart attack. When Dana was told he had ten years to live he took up bicycling to strengthen his heart. Then he broke his back during an unfortunate cycling accident. He astounded his doctor when he returned to his physically demanding job, and to cycling. Time and again, our fighter beat the odds. He did things he was told he could never do. The years passed and a pacemaker with defibrillator was installed. The surgery was unsuccessful and a cardiac microsurgeon was called in to finish the procedure. This is what Dana jokingly referred to as his “Five Year Plan”. Diabetes, pneumonia, bronchitis and asthma pressed against him. But Dana pushed back. He never gave up.

In September of 2012 Dana was rushed to the hospital. His heart had stopped. He was resuscitated and prepped for a life flight to a larger hospital with an advanced cardiac unit. His son Chris, who lived in Vermont raced to meet us in Upstate New York and we drove to Pennsylvania, fearing the very worst. Nothing could have prepared me for what I would see when I walked into his room in the cardiac ICU unit. Unable to talk, not breathing on his own and hardly able to open his eyes, Dana flashed me a thumbs up sign. The man looked like death, but he was a fighter. He wasn’t ready to admit defeat yet. Fourteen years after his ten year prognosis, Dana was still beating the odds.

david's train

Thanksgiving of 2013 we brought our four children down to Dana and Sharon’s house and it was apparent that something was wrong. He couldn’t eat. He napped three times a day. Still, he harassed his grandson, teased his granddaughters and would squeeze their shoulders every time he walked by. One of the last days of our trip he spent nearly three hours on the living room floor with my husband, his son, building a train track set for his grandson. I don’t even know how many times he cursed those directions. But he didn’t give up. He got that train track up and running. Then he sat down and ate three slices of Seltzer’s Lebanon sweet bologna. We were all happy that night. The following Monday, he was admitted to the hospital.

In and out of doctor’s offices, Dana continued to fight the ever increasing tides that railed against him.

Two weeks ago my father-in-law entered cardiac arrest. Once again, Chris met up with our family and we made the trip to Pennsylvania. Dana rallied. We would see great improvements, followed by dramatic setbacks. We were encouraged to turn off Dana’s pacemaker and stop all of his medications. He refused. The doctors seemed to suggest that we convince him to give up. Again Dana refused. That night he made an incredible comeback and his team of cardiologists recommended a life-flight to Philadelphia. “Best cardiac unit in the nation,” we were told. “Best chance of survival,” they said. Dana didn’t hesitate for a moment. He was going to Philly.

His first 24 hours in Philly looked great. Dana was fighting, and winning. We were thrilled to see him improving so much in such a short span of time. All the while, he joked. He could barely whisper but he could make you laugh with just a few words. He sent us on our four hour journey home feeling wonderful. It seemed too good to be true, and it was. The next day we were called back urgently; treatments had failed and Dana was unwilling to give up.  Hospice care was mentioned again. Silence fell over the family. Dana was a fighter. He would never give up.

That night Dana agreed to enter Hospice care, on his own terms. He would leave the following day. He urged us to go get some rest and “Win the Lotto” so we retired to a nearby motel after grabbing some lotto tickets. The next morning my mother-in-law was shocked to see his cell phone number show up, “Just checkin'” he whispered to her. He was ready. I’m not so sure that we were.

At the hospital his sons all spent some time with him. I went into his room with my brother-in-law’s fiance and we announced that “trouble” had arrived. In his weakened state, Dana motioned for us to come close. Closer. Closer still. With my ear perched at his lips he pointed to the nurses and whispered, “They don’t trust you.”

As feeble as he was in his final hours, Dana never complained. He took the time to ask about each of his grandchildren, nodding in approval when I informed him of their latest antics. I told him that his old buddy was giving our youngest boy a hard time. “Good.”

He always gave the illusion of being entirely in control. He was a tough, strong man. He was a fighter.

Dana Gay Kunkel never gave up on living. He beat the odds more times than any of us could ever count. He left this earth when he was ready, not a moment sooner. He was never defeated by death. No, Dana defeated death time and time again. He only hung up his gloves, said his goodbyes and retired.

grandpa and girls

Who are you?

IDENTITY

Look at your hands. What do they say about you? Are they dry and chapped from a harsh Northern winter? Is there dirt under your nails from working with the soil, getting seedlings started for the coming spring? Are they scarred from years of hard physical labor? Are they soft and well manicured from a conscientious dedication to hygiene or a life of pampering? Are your fingers twisted and gnarled from years of ravaging lupus?

Your hands can reveal quite a bit about your lifestyle, your habits, your hobbies. But a casual inspection cannot determine who you are; it cannot reveal your identity.

When a child is born in the hospital, the physician doesn’t merely make a note of the infant’s physical characteristics and have a nurse jot them down on a crib card. Before that baby ever leaves the delivery room, a nurse takes a footprint to document the identity of the child.

When a criminal is apprehended, he is logged into a system, not only by his physical characteristics, but by a record of a one key trait that is uniquely his: by his fingerprints. Every handprint and foot print is as unique as the DNA that courses through our bodies. While we can get a vague impression of our “identity” by peering at the whorls and grooves etched by the very hands of God onto our fingertips, we don’t see every detail until we apply those prints to ink and then to paper. Once we have a concrete, visual record of that, we really get to see our defining characteristics.

Last year, during a time of prayer and introspection, I felt a gentle nudge from the Spirit guiding me to look at my hands. To examine what stands out, what makes them uniquely mine.  As I studied the wrinkles and patterns that were ingrained in my palms  the words, “Apply yourself and you will see who I have created you to be,” began to flow and repeat in my mind. Over and over again, “Apply yourself, apply yourself… I have created you.”

I realized that I have been hiding away my talents for far too long. I have been hiding in the shadows of others’ greatness. Waiting, perhaps not wanting, to be discovered. I know that God has crafted my heart, my mind, my hands… for a special purpose. Until I began to actively apply myself to this broad canvas called life, I had never seen my mark made. I couldn’t recognize all of the potential that was locked up and stored inside of me. By closing my hands, I had refused to let myself see what I was capable of. Really, I had refused to let myself see who I really was. I had bottled up so much compassion and inspiration. I have such an overwhelming desire to help and to bless those around me. I had kept that hidden away for so long that I had actually hidden it from myself.

I have begun, slowly, to embrace who I am. And I have been thrilled. And terrified. I am quite literally in a constant state of awe and wonder and confusion. And it has been incredible. No, it has been Divine. This Fall, I began to meet weekly with a group of women and craft and cook, eat and pray together. I have laughed and cried. I have been blessed and humbled. I have felt insignificant and conversely wholly necessary. And by applying myself to the great Canvas of Life, I have seen others begin to break out the fingerpaints and begin to discover who they are. And this Canvas… it is beautiful.

Anyhow, more on all of this later. I just wanted to give you a heads up that more personal reflection and introspection is on the way. My life is changing and my thoughts are being transformed on this great journey of discovery. It’s a wild ride, and I want to share it.

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So Much Left Unsaid

My last post went in a completely different direction than I had initially intended. It seems that is often the case in creative endeavors, or at least in the creative endeavors that *I* undertake. I sometimes joke that I have crafter’s ADHD. Typically when I make the joke I hesitate and fall just short of adding the parenthetical “No. Really.” I sometimes hope that people assume I made the joke because there is some form of truth to it, other times I hope they un-hear what I just said.

In reality, while I predominantly am a very grounded person with both feet firmly planted on terra firma and a rather steady grasp on reality, I am also more flighty than a bird. In a constant pattern of migration. Or perhaps I am like a crow in the respect that if I see something glinting in my periphery I’m thrown completely off course, “Oooh, shiny!”

Being the bearer of such knowledge, you will understand me when I tell you that my thought patterns float along like an amoeba carried by the ebb and flow of the natural tide, a prisoner caught between the pull of the moon and the gravity of earth. My very clear intentions may be to bake cupcakes when I enter the kitchen but my family might end up eating fleur de sel caramels instead. I want to write about my day but I end up writing about the beauty that comes from fragmented sorrows. My attentions are diverted more frequently than not.

With that “disclaimer” (?) in place, I’d like to share with you what I had initially intended when I talked about embracing a circumstance in entirety. I wanted to make clear my feelings on my daughter’s recent diagnosis of Asperger’s Syndrome. I don’t know that someone who has not walked in my shoes can fully appreciate the scope of what I am feeling so perhaps it is futile to attempt to explain it to you. I shall soldier on, in any event, because it is my stubborn nature to do what I choose, no matter how unreasonable or how inconsequential the results may seem. You see, we are all complex creatures with unique life circumstances that have shaped our perspectives and natural thought processes but there is a chance that there is someone else out there who has faced situations and feelings similar enough to mine that maybe, just maybe, they feel a hint of what I feel. And it is comforting to know that there is someone else in this sea of humanity that can identify with you. It makes you feel strangely connected, as if by some invisible thread, and that tiny little scrap of invisible means that you’re not alone. And not being alone makes silence more tolerable. Not feared. Sometimes welcomed even. Because… well… you aren’t alone. Never completely alone.

So. Back to it. I’ve been contacted by several people in person, through the phone, email, social media, etc. regarding my daughter. I can only surmise that a desire to be supportive is their motivation but their actions land squarely in the comfort arena. I don’t really know how to explain it. It almost feels like people are trying to comfort me as if I should be in mourning. I’m not insulted by any means, but I find myself reciprocating comfort to them more than anything. I don’t feel the need for a shoulder to cry on.

Let me be implicitly clear on this: My daughter is perfect. She was fearfully and wonderfully crafted in the hand of the Creator and is beautiful in every way. There is not a single nuance of hers that I do not fully embrace. She is exactly what my family needs and God gave her to us because we are exactly what she needs. She is strong, bright, creative. She is an exceptional child, uniquely gifted. Her gifts are accompanied by challenges. Overcoming those challenges is not only strengthening her, it is making us a stronger family. It is making me a better parent and a better person. What others view as imperfections are the dimples and dangly parts that make her fit perfectly in the puzzle of our family.

Who is to say that my daughter is “different”? Like snowflakes, no two people are exactly alike. We are quick to acknowledge the differences in our genetic composition but even though we quip that “Oh, every child is different!” we hope that our own are as “normal” as possible. If every child is unique than doesn’t that mean that being different is being normal? The very essence of our differences is what makes us normal. They make us believable and genuine and… human. (The Stepford Wives, anyone?)

My red hair lumps me in with the ginger crowd. Your infinity scarf and Uggs lump you in with the trendy crowd. My neighbor’s oversized glasses and siphon-brewed Valhalla coffee served by a man wearing pants so tight you can easily observe that he has no testicles puts her, right along with her barista, in with a bunch of coffee-snob hipsters. My daughter shares traits with a group of people that have Asperger’s Syndrome. She can identify with some amazing people. How is that a bad thing?

The drawback comes in failing to recognize and acknowledge her needs. There is a tremendous benefit that I have been afforded by affirming that my daughter has Asperger’s. I understand her better than I ever have before. I am learning to communicate with her in a way that gives her the ability to understand me more than she ever has before. We are developing intimacy in our mother-daughter relationship that we are experiencing for the first time.

So don’t mourn for me. Don’t try to console me or comfort me with well-intentioned, over-used phrases like, “It’s going to be ok.” or “You’ll make it through this.” Everything is ok. And we are making it though this—whatever “this” is.

Embracing my daughter’s diagnosis of Asperger’s Syndrome seems perfectly natural to me. I have been given an incredible gift; a glimpse into her mind. Parents sometimes joke about wishing that children came with an instruction manual; mine didn’t come with a manual but there are some incredible people who have documented the commonalities of individuals with Asperger’s and made their observations available through books and websites and blogs. These resources have afforded me a heightened awareness of my little girl’s psyche. It’s like capturing a glimpse of what’s inside a rose without having to tear the delicate flower apart, petal by petal. What a fantastic opportunity for me. What a tremendous gift for her: Mommy can finally understand.

For those who are joining us on this journey of discovery, I am grateful. Grow and learn with us. But don’t ever look back. Don’t wish for what isn’t and don’t mourn for what is. Take your time and enjoy each rose: its beauty, its fragrance, the mysteries it holds. Embrace each moment and thank God for it. When I fall short, remind me of my words. When you stumble, I hope to be there to help you on your way.

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