This Little Miggy Stayed Home: Fear to Love: Semi-Finalists

Wednesday, January 17, 2018

Fear to Love: Semi-Finalists

This past October I announced a very special giveaway with Alaska Airlines where we would be giving away 4 free round trip vouchers to one amazing special needs family. Well the time has almost come to reveal the Grand Prize winner of the Alaska Airlines Fear to Love essay contest. In addition to a grand prize winner there will be 4 runners-up who will receive some amazing gifts from some of my favorite small brands.

But not yet...

You have no idea how hard it was to choose a winner. Each and every essay could have won. I'm not joking. Let me repeat, I AM NOT JOKING! You guys. They were all so good. I read every single entry that was sent in, twice. The first time just to read them and get a feel for them, and the second time to narrow down the field. I didn't even manage to narrow it down to half of the essays that first round! But I sent those remaining essays on to 4 more judges who each selected a handful of favorites, which eventually got us to our top 20, and then our top 10. I asked everyone who participated in the judging that if they knew someone--either in real life or had a significant online connection to them--to please not include them in their top choices, myself included. As I continued to read and re-read the essays that would make up our top 20, then top 10 and eventually the top 5 there were certain themes or phrases that would jump out at me as being especially profound or beautiful. So that's it. I went with my heart, as did the other judges.

Other than a word limit (give or take--I wasn't super strict) and the question "How have you conquered fear and landed in love?" there were no rigid judging parameters. Some essays were very well written with beautiful imagery and metaphors. Some essays were more straightforward and candid. Most essays focused on their children, but some were written about spouses or even themselves. A lot of essays made me cry, and a few made me laugh. Every single essay came straight from the heart. It was an honor and a privilege to read them.

Thank you to every single person who entered.

On Friday I will be posting the Grand Prize winning essay, as well as the 4 runners-up. But today, in no particular order, are the other 5 essays that made it into the top 10. You might want to grab a tissue or two.

*****

I met Lisa randomly through a mutual friend when she was road tripping across the United States. I thought she was stunning. Our paths barely crossed, but there was instant attraction. At the time, I still had two teenage daughters living at home, and she was in graduate school in Iowa and I lived in Utah. I sensed that I was engineered to join on her journey but couldn’t see how that would work logistically.

1.5 years later we started texting a lot, and realized what I think we knew from the start. We fell in love, and 2.5 years of excruciating long distance later we married under a tree in a field in Iowa. My now wife is a perfectionist from Sweden and our wedding was one of epic pinterest proportions in which people from multiple states and countries met at a decorated campground to witness our promises to each other! After the wedding Lisa moved to Salt Lake City, and we finally got to land together in the same house, the same city, the same state. The long distance was our first fear, then blending our family together, as my girls tend to be possessive. Fear is like that, always on the move, and changing forms.

My wife’s disability, spina bifida, has always just kind of been there, sometimes in the shape of fear. I know for Lisa that fear has accompanied both singledom and our marriage. Big insecurities about worth are reflected in the small anxieties, like the physical balancing act involved in walking down the wedding aisle in white new shoes. For me, there was the time when TSA required Lisa to take her pants down during a routine security screening at the airport because of her braces and none of my objections worked. And countless other times of feeling helpless when the woman I love would tell me the perverted thing of the day that some douche bag had said to her because she uses a wheelchair (apparently disability and pretty = asshole magnet). But fear is almost always the thing surrounding disability, not the disability itself.

I have been afraid, wondering how we will accomplish certain things, like when Lisa fell in love with our inaccessible 1920s house, or when Lisa longingly looks at the mountains and says “I want to be in nature! Let’s go!” I have had to learn to be fearlessly creative. As an able-bodied man, I have seen more mountains, rivers, national parks, and countries, than in all my years before Lisa. We learned to sit ski, to row a drift boat so we could fly fish together, to go camping, and we adopted an emotionally damaged shelter dog, God help us. In a million ways, when invited into a situation, love has lifted us out of fear. We hope that by choosing adventure over fear, we will demonstrate to the world a way out of the fear that fuels the prejudices and limiting ableist systems that surround us.
--Jamin Jackson


*****

My wife didn’t take ibuprofen for headaches, didn’t drink coffee, avoided lunch meats, and stayed far away from sushi. We were “low-risk”, active, organic-fed, prenatal vitamin-consuming, genetic counselling-approved first-time parents. Pregnancy was smooth and uneventful, filled with whimsical daydreaming and gentle belly rubbing. However, when our firstborn son Ori arrived, we realized a critical and merciless Truth about life: shit happens.

Our lesson began with a double nuchal cord scare. No big deal, these things happen, just call in the emergency crew of five medical professionals, unwrap the umbilical, resuscitate with pure oxygen, and Bob’s your uncle. This was only a taste of the Truth. Some time near birth, Ori suffered a massive ischemic stroke. The nature of his stroke would have been fatal for an adult, we were told. As our son was rushed down the hall on a baby gurney I witnessed my wife, four hours post-natal and wearing post-partum mesh underwear, hobble after in hot pursuit. We waited helplessly as our son was literally put on ice as an emergency measure to prevent horrible possibilities like “secondary brain injury." Our neonatologist, angelic and uber-competent though she was, cried as she informed us our son would likely suffer lifelong consequences of this unlucky roll of the dice. At the time, I didn’t know what cerebral palsy or hemiplegia meant, but I had an idea of what “cognitive and motor deficits” meant, and all of it sounded terrifying.

In the months that followed, equipped with our new found grasp of the Truth, we lurched from one perceived imminent disaster to another. He wasn’t pausing before sneezing, he was having a partial seizure. He wasn’t tossing and turning to get comfortable in bed, he was surely having another brain bleed. Nevermind our previous grand dreams for our son’s future, we lived in constant fear of him suddenly ceasing to breathe again. Yet, in reality, none of these moments were the disasters we dreaded. They were the innocuous everyday moments that before Ori was born, in another life, wouldn’t have stirred so much as a double take in either of us. We were proudly “easy-going”.

It has been a slow process, an ongoing process, of gradually loosening the tension. This process has been fed by consistent wonderful surprises. Despite fearing he might never roll over or be able to speak, Ori now not only walks and talks, but pedals a scooter! Despite fearing our spirit might be irreparably damaged, our family has grown only more resilient and compassionate through dealing with Ori’s special needs. He charges through the exhibits at his favorite aquarium squealing with excitement and greeting the “octo-puh” and the “biiig shark”. My wife and I find ourselves grinning at one another and repeating “can you believe this kid?” Not so long ago, I could have imagined no greater a vision of happiness than simply to hear Ori’s steady breathing. But now, uplifted by Ori’s determination and positivity, and filled with love forged in fire, I can’t imagine a limit.

--Nate Spindel

*****

Some moments you never forget. Like the phone call from foster care placement asking us to add two little ones, ages 2 and 1, to our family. He asked, “Are you comfortable with special needs? The two-year-old tantrums a lot and autism is suspected.” No problem, I thought. This was not our first placement through foster care so I knew what tantrums looked like -- or so I imagined.

I’ll, also, never forget the moment I first laid my eyes on that blue-eyed, blond-haired little boy. We walked into the office and there he was strapped into a stroller and rocking his whole body back and forth, back and forth. And he was humming to himself. I will always remember his sweet voice humming. He was absolutely precious. As we drove that beautiful boy home, I

felt confident. I had hours of parenting and trauma training, a past career in early childhood education, and my experience parenting two boys. I often gave parenting advice, solicited and unsolicited, to friends and family. I had it together. I jumped into the water with both feet.

As the weeks passed, it became clear that the water was much colder and deeper than I expected. His delays were significant and his behaviors extremely challenging.

Autism quickly taught me I knew nothing. And other people were going to see that. That was the terrifying part—They were going to see we were struggling. I quickly realized I was trying to swim wearing a winter coat of judgement, pride, and expectations. I needed to shed

that coat to move forward. The diagnosis of autism with developmental delays officially came 9 months after he joined our home. Some days I felt I was swimming through calm water and becoming stronger. My love for this special little boy deepened daily. The more I served him, the more I loved him. And each day I found joy in his approach to the world.

But some days, when I was exhausted from treading in the waters of challenging behaviors day after day, those waves of fear would wash over my head. Were we the right family for him? Could we meet his needs? Could we embrace the challenges? Would our lives change? Would I let those fears anchor us down and tether us back?! I decided absolutely not. I love this boy. And I love what autism teaches me. Now four years after our adoption was finalized, we are swimming strong. I have learned to make adjustments and let some things go. Instead of hiking, we got a tandem bike and go on family bike rides. Instead of worrying about stares during a meltdown at the museum, we focus on the smile and kind words of a stranger. Instead of judging another mom with an “out of control” child, I ask how I can help. Swimming through these often scary waters has ultimately made me stronger, happier, and more filled with love for my son, for myself, and for others.

--Laura Allred

*****

My name is Shaun Fehr from Alberta, Canada. I am a father of two beautiful girls, one who has a 21q microdeletion. Thank you for reading my submission. Our journey through this life has led to some amazing experiences. There has been so much fear in our journey. But with fear also comes an incredible love like I have never known. I was a completely different person prior to having our two girls. I would only think about superficial things and had no real grasp on life was really about. My perspective was very narrow minded. When our first daughter Hayden was born, however, I started to see things differently. Her diagnosis, her struggles, and the struggles I face as her father has constantly made me think differently. I beam with pride every time Hayden makes it through another poke, or walks one more step, or smiles or pretty much anything she does. She has already accomplished so much. I brag about how tough she is and how she is my own superhero.

I have fear, however, for the uncertainty of the future. As she is nonverbal, I would think about the possibility that she won’t ever talk. Would I ever get to hear “I love you daddy”? What if she never talks? My answer came to me one day from Hayden herself. I was holding her and we were dancing to Garth Brooks. She was giggling and smiling and having a good time. Halfway through the song for no reason she buried her head against my shoulder and held it there, as if to tell me, “I love you daddy”. I immediately burst into tears and I knew in that moment it didn’t matter whether she would speak those words or not. She told me she loved me in her own way. It was a profound experience that I am thankful for. She does communicate, it is just in her own way that she expresses how she feels. She has shown me that communication is more that words spoken. Through this experience, she has shown me another perspective. Sometimes, perspective is all that is needed to bring change. I now try and see things from a few perspectives. It can be incredibly tough, and sometimes it seems impossible. Choosing to see Hayden’s abilities rather than dreading about what she doesn’t or may not do, has helped me overcome fear of the uncertain and embrace a beautiful future. The change in perspective has helped me see the beauty in her condition and look forward to the incredible things I will get to experience as her dad. It has helped me see who she is and everything she has already accomplished in her life. It allows me to be strong for her in dark times and gives me hope. She is my teacher, and she has already taught me more than I could ever wish as a father.

--Shaun Fehr

*****

The Unknowns: The ultimate fear of my family since the beginning. I was born with scoliosis, hydrocephalus, and a new (only about a year ago!) genetic condition called FKBP14 Ehlers Danlos Syndrome. I have had three spinal fusions and Hydrocephalus’ only treatment is brain surgery; I have had ~12 so far. I was the 10th in the world to be diagnosed in 2016 with FKBP14 EDS, and therefore we’re not always sure how to manage everything even 26 years in to my crazy wonderful life. I am at risk for many complications, and every single system in my body is affected. My sister passed away when she was five, likely from causes of FKBP14 EDS that were (and still are) not known at the time. The fear of what could happen tomorrow has been a huge part of my life. I studied relentlessly in school to stay about a week ahead of schedule, just because I was afraid I’d get sick and get behind, and I always have

a hospital bag packed “just in case.”

Here’s the thing though, something I realized just this year… I spent 25 years afraid for the future, without ever looking back at all those things I (or my parents) previously had been afraid of. They were told I’d never walk or talk, and I haven’t stopped talking since (sorry, mom). I was afraid to go away for school and to be so far away from my medical team, and even when the worst case scenario did come to play two years in to my college career, I made it through. I got back to campus, made it to a bar crawl a week after my 6th brain surgery I’d have in college (don’t tell my surgeon please), and finished my degree having made some of the best friends I’ll ever have. While I hate that phrase “everything happens for a reason.” I’m starting to believe some of that is true. If I hadn’t of had the surgeries in college, I wouldn’t have had to skip a year in school, met my wonderful boyfriend of almost three years, and so much more. When I realized this, I got brave enough to try traveling out of the country for the first time despite some major fears. The “what ifs” were big enough to almost stop my plans in their tracks, but I planned for what I could, and then remembered how much time I’ve wasted being afraid of something that turned out to be amazing. Spain changed me, made me hungry for adventure, and gave me the confidence to travel more knowing I successfully can manage my health while abroad. Literally, I went from being afraid of so much to finding love in a person, in traveling, and in life. I landed in love realizing that while I know I will face many more challenges in my life, I can now be excited for the unknown and everything that it will hold outside of hospital walls.

--Melissa Bruebach

2 comments:

  1. BAWLING. Beautiful writing, beautiful people, beautiful stories. What an amazing opportunity to read these words.

    ReplyDelete
  2. Wow. All of these are amazing. I can see how you had a hard time!!!!!

    ReplyDelete