Friday, January 19, 2018

Alaska Air + This Little Miggy Contest Winner

This Little Miggy || Fear to Love Contest winner
Thanks to Alaska Airlines for partnering with me this year on a discussion about fear, love and traveling as a special needs family. Thank you so much for supporting sponsors here on TLM, as it allows me to keep creating content I care about. 

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. The time has come to finally announce the GRAND PRIZE winner as well as the 4 runners-up winners.

First, a big, huge thank you to Alaska Airlines for sponsoring this post and this amazing giveaway. Traveling as a special needs family can be a daunting task. I'm so happy to know that Alaska Airlines cares about the special needs and disability communities. You can read about their special needs guidelines here, wheelchair assistance here and their involvement in the Wings for Autism program here.

Also a huge shout out to the following sponsors for providing such amazing gifts for our runners-up. A BIG thank you to:

The 4 runners-up will receive a Big City bundle from Tubby Todd, a Cashmere Poncho from Pepper Place Designs, a handmade shibori apron and cutting board from Live Free Creative Co and a gift certificate from Fawn Design good for one FD bag of their choice! You guys these are such wonderful gifts! You are going to love them.  

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Once again I want to say THANK YOU to everyone who sent an essay. It was an honor to read your stories. These were very personal essays about your lives and your loved ones and I don't for one second take that lightly. There is nothing left to say but thank you, thank you, thank you. 

Without further ado the Grand Prize Winner of 4 round trip vouchers to anywhere Alaska Airlines flies (excluding Cuba) is.....

After Finn was born and ferried through an increasingly worried flotilla of nurses, we arrived in the recovery room where a crow was meanwhile pecking at the plate-glass window. The Children’s Hospital was within view across the way and I remarked that—thankfully—our time wouldn’t have to be spent there despite the nurses having expressed some untold concern in the delivery room; the crow, meanwhile, was bothersome. He hammered at the plate glass, bustling his feathers and attempting to enter into our space while Finn slept in the bassinet. When the pediatrician finally arrived, the crow flew away leaving one black and errant feather on the sill.

“It’s my professional opinion—and what the nurses were concerned about—is that Finn has Down Syndrome.” 

The crow suddenly made sense. Despite not having physically winged its way into the room, its spectral something had nevertheless found sentry at the headboard: an embodiment of fear, a harbinger of misfortune. This happened to us. We were left mourning the child we’d been expecting and given instead a sleeping confusion of excess chromosome; I remembered all the children I’d thought imprisoned by their 21st chromosome, their almond eyes and seemingly perpetual simplicity. I was scared of the 'now what?,' even more scared of the future not understanding anything Down Syndrome had to offer.

A nurse scared away the crow come two in the morning, exploding into the room with pink scrubs and a winning smile.

“You are going to have So. Much. Fun! My daughter has Down Syndrome and it’s the best thing in the world! When I heard the news, I couldn’t wait to come tell you!” 

And at 2 a.m., which is said to be the darkest and most fear-inducing time of night, when morning seems still forever away and the night still palpable, my wife and I looked to each other, then to Finn sound asleep in his incubator. We believed the nurse, knew there were a few hours left till morning, but suddenly saw promise in that extra chromosome; that crows needn’t haunt the room blackly, or our house be weighted with specter. Finn was cause for celebration. His extra genes, his soon to develop smile, would bring with them an extra helping of joy. It would just take the night to extinguish itself and the morning to arrive, the light to fall on his face and his almond eyes to open—our eyes to equally open—and all feathers from the sill to have fluttered away, gone from view.

In some cases you accept and move on. In other cases you accept the exceptional, the exception you at first were blind to. Finn is our unicorn, having been declared a horse upon birth, no one privy at first to the horn he sports, a perfect spiral, ivory, grown from an imperfect number of chromosomes. 

--Thom Hoffman

Congratulations Thom! Your essay is amazing. Your writing is exquisite. But more than that, the way you expressed your fear to love journey, perfectly encapsulates the collective experience of so many of us. In a word, magical. I appreciate the honest feelings you shared in regards to people with Down syndrome before your son was born, "I remembered all the children I’d thought imprisoned by their 21st chromosome, their almond eyes and seemingly perpetual simplicity." I love your analogies, especially your description of Finn as your unicorn, "a perfect spiral, ivory, grown from an imperfect number of chromosomes." And lastly, it is my sincere wish that every parent of a child born with Down syndrome would receive the happy news with a nurse exploding into the room with pink scrubs and a winning smile. God bless the good nurses. Thank you so much for your essay and congrats again! I'll be in touch. 

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And the 4 runners-up, in no particular order, are:

Our daughter was six weeks old when my husband noticed the bow in her leg. I was sure it was nothing. Newborns have bendy legs, I thought; everything will be fine. But X-rays don't lie and the diagnosis was bad: a rare bone defect that no one is sure how to repair. This diagnosis led to testing for a related genetic tumor disorder. The geneticist called with the results on Saturday afternoon. No one calls with good news on Saturday afternoon. 

For months, every time I looked at my beautiful infant daughter, I saw risk. Limb loss. Blindness. Malignant brain tumors. Disfigurement. Epilepsy. I watched dark spots emerge on her abdomen. I saw her leg bones bend, and bend, and then break, and then bend some more. The process of learning about her conditions felt like waking up from a good dream to realize that everything was terrible. The uncertainty of her genetic condition made this harder; no one can predict how severely her mutation will manifest. I am an academic by training and my husband is a physician, so our instinct was to turn to the scientific literature. But as we read study after study, I fell deeper and deeper into fear; every journal article revealed something else that might go wrong. The X-rays kept getting worse. All of the hopes we had for our daughter--the same hopes we had for her older brother--had to be reconfigured, ripped apart at the seams and sewn back together around the shape her life would actually take. 

But something else happened. Our daughter grew. She laughed; she clapped; she said "Mama" for the first time. We turned our attention from the medical journals to the human being in front of us, and we learned that she is amazing. We learned that she thinks offering you a bite of her food and then snatching it out of your mouth at the last moment is hilarious. We learned that she will clap and dance and babble along with "The Wheels On The Bus" for as long as we can bear to sing it. We learned that she is very determined, which is our euphemism for stubborn as all get out. 

And as we got to know our daughter, something shifted in my heart. Her diagnoses receded--not entirely, but to the right size, so that they no longer dominated my perception of her. I began to understand her as a person who happens to have special needs, not as a list of risk factors with a baby underneath them. And through that lens, while the risks are the same, the fear has become less crippling. We are able to make decisions for her based on our knowledge of who she is rather than anxiety about what might happen to her. She has loved us out of our fear.  

--Miriel Reneau

Thank you for your submission and for sharing your beautiful journey from fear to love. There is real fear when you have diagnosis upon diagnosis stacking up on your child, seemingly hiding who they are and taking over their identity. BUT, as you said, "We turned our attention from the medical journals to the human being in front of us, and we learned that she is amazing... She has loved us out of fear." Perfectly and beautifully said. 

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Turning fear to love began, for me, in a doctor’s office surrounded by 8 specialists. We were week 2 into being told that our son, Archie, had the most severe form of Spina Bifida. I listened to each doctor explain the issues my child would have. When they had finished painting a picture of his life we got to the Psychiatrist. She looked at me and said, “Your son's condition gives him an increased risk of suicide as a teenager.” My jaw dropped to the floor and didn’t leave that floor for the next 3 years.

I can’t say that I magically replaced love with fear. It wasn’t a conscious choice. It was after many years of feeling sorry for my son and myself. Grieving all the things he wouldn’t do. How his life was bound to be “less-than” compared to others.

When Archie was 3 we were at a doctors appointment for his feet. They had been deformed in utero. Most of the time his physical deformities were met with many sighs or “poor thing” with nurses and medical staff. I would usually try and change the subject or get defensive. On this particular day the nurse held his tiny, red, deformed feet in her hands, looked into his little blue eyes and said, “What a darling boy. Isn’t it so fun to have these boys and imagine their future?” (I had 2 boys at the time) The way she said it was so matter of fact. Was she really lumping my two boys together? As if their quality of life was on par with each other? How was that possible? I had been told differently for so long that I really believed it.

That same nurse proceeded to have a discussion with my 5 and 3 year old about all the things they wanted to be when they grew up. The list was endless as you can imagine. It was a moment in time that I will always hold dear. It didn’t transform me in that moment. But it unlocked the door for me to step out of the tiny house of fear I had been stuck in, into the mansion of love that was waiting for me. My view was expanded and I knew that life could be full and wonderful for my son. I knew it. I still know it.

I see the power behind attitude in life. In fact, I learned that it really is the only thing that matters. I wish I could tell myself 5 years ago to pray my heart out, not that he would walk or be “normal,” but that I would see that his potential was just as grand as any other kid. My fear for his future was wrapped up in my own insecurities and the lens with which I viewed the world. Archie has taught me that love can and does replace fear. The same way light replaces darkness. For that I am forever grateful.

--Shannon Davis

Thank you Shannon. Thank you for your honesty--some of us can get stuck in fear for years. After your encounter with the nurse (again with the amazing nurses!) I loved it when you said, ".. it unlocked the door for me to step out of the tiny house of fear I had been stuck in, into the mansion of love that was waiting for me. My view was expanded and I knew that life could be full and wonderful for my son. I knew it. I still know it." YES! I too believe that love can and does replace fear. 

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It would be two years before I’d hear him say “mama” again.

It started when he stopped clapping. He still said his words and smiled his sweet smile… he just wouldn’t clap. A few weeks later, he forgot how to say "go." Soon, he stopped playing peek-a-boo. It took four doctors, three therapists, and two terrified parents before we got an answer to something that deep in my heart, I already knew. Henry had regressive Autism, and there was no telling where his regression would end and whether he’d ever speak again. It wasn't long before he lost his last word. Over the next two years I would replay that breathy, sing-song voice saying "mama," compounded with a grief so fierce and a reminder so necessary of what there was to fight for. Henry had dimmed to a shadow of himself, and I was determined to find that light inside him, and maybe even inside me, and bring it back. Uncertain, we grew.

Fearful, I searched for a magic pill, something to make this better, to make it fair. But there was no magic pill, and Henry remained in his world. Unwilling to be in ours, we joined his. When he flapped his arms, we flapped ours. If he was spinning in circles, we did too. Running on tippy toes? Squealing? Stacking cans? Spinning Wheels? Check. Check. Check. Double check. I stayed there with him for months, reminding him that the world outside his mind, though scary in his unregulated state, was safe. Gradually his eyes lifted, a look so joyful and reminiscent of his pre-regression self. And we grew. In joining him, I learned more of his fears, his discomfort, and his crippling inability to do anything about it. As I focused more on what it was like to be Henry, I forgot about how much it hurt to be me. I pushed my own fears aside to assuage his. And we grew.

As he became more comfortable, we increasingly challenged him, and to our surprise, found that he sought to be challenged. Atypically, Henry thrived in extremely stimulating environments and travel seemed to bring on intense learning spurts each and every time. So we threw him into the unpredictability and chaos only travel can bring. We played in Central Park, drove through Havana, biked Amsterdam and floated on the Mediterranean Sea. And we grew. His language, though rigid, returned. His eye contact, though reluctant, improved. He evolved into the Henry, only he could be. Alongside him, I evolved too. I learned to not only accept, but celebrate Henry, Autism and all. His repetitive phrases and flapping arms. His determination to wear as much red as possible, and intense dissatisfaction with sadness, so much so that when badly hurt his first response is to say “I wanna be all better.” I decided that like Henry in our travels, I would embrace the unpredictability and chaos of our special needs journey. I followed Henry’s example of bravery, and we grew.

--Isabel Harris

Thank you Isabel. What struck me so much about your essay was when you said, "But there was no magic pill, and Henry remained in his world. Unwilling to be in ours, we joined his." And then, "In joining him, I learned more of his fears, his discomfort, and his crippling inability to do anything about it. As I focused more on what it was like to be Henry, I forgot about how much it hurt to be me. I pushed my own fears aside to assuage his. And we grew." Oh mama... I love this all so much. So beautiful and poignant. 

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The ultrasound technician announced it's a boy. Tears. All the tears.

A boy. Again. That's where the fear started. That beautiful black and white image showed us an allegedly healthy baby boy.

That little boy is the youngest of eight. Five big sisters and two big brothers came before him.

Three years prior to that ultrasound, we laid to rest our middle son, Jake, who fought against his body every day of his seven years. Jake's birth resulted in life long disability; with his biggest battle being failure to thrive. A battle that was lost despite every possible intervention. Jake had four different feeding tubes; three j-tube revisions alone in the last year of his life. To not be able to keep your child thriving in the most basic sense of the word, that is fear.

To have another sweet boy to raise, that is love.

And the cycle continued. Despite a healthy full term delivery, our youngest son, Jude, did not thrive. For years, we added diagnosis upon diagnosis, each playing a part in keeping Jude from growing. My biggest fear was another feeding tube. I could not watch another child suffer in this way. Feeding tubes are the way of life for so many families; but for ours, it represented failure and deep loss. The nightmares associated with having watched Jake's multiple feeding tubes fail plagued us. No matter how different our sons’ needs were, that one shared diagnosis was breath taking.

One boy ambulatory and verbal; blond haired and blue-eyed, our Jude. The other boy, non-ambulatory, vocal with sounds only; dark haired and brown eyed, our Jake. These brothers could not be more different, and yet, both boys shared this one struggle; failure to thrive.

This fall, after five years on oral elemental formula, therapy upon therapy, 13 various medical procedures and surgeries (failure to thrive is just one piece of his needs), Jude received a feeding tube and we, we faced our fears. Jude is now positively thriving, in the most basic sense of the word.

This December will mark ten years since Jake passed away and the memories are quite literally in my face each and every day as I care for Jude and his needs that are different, yet similar to his brother's. Being able to meet those same needs that once brought us total devastation, that is conquering fear and landing in love.
--Katie Apple

Thank you Katie. To face such a devastating loss once is unimaginable. To face it a second time, and to push through the memories and the pain, for the sake of your son each and every day is super human. Or in other words, it is love. Your story is the encapsulation of love that enables us to do more than we ever thought we could. 
*****

Have a fantastic weekend. 
XO, 
Miggy

5 comments:

  1. Wow. Just wow. Such powerful stories!!!!

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  2. thank thank you thank you for this blog and everyone that contributes! and fo helping us feel like we are not alone in our own fear to love journeys.

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  3. Anonymous5:15 PM

    Thanks for sharing your stories about not only the tough times but also the glimpses of sun shining through it all.

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  4. laura1:03 PM

    thank you for sharing these stories that say what i wish i could say!

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