YEAR-IN-REVIEW: Junior 2017-2018

What a year. I say this every year, but where do I begin??? To say that this was one of the most trying years I have experienced would be an understatement. 2017-2018 has brought me some of the most joyful times along with some of the most heartbreaking.

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I hate to begin a reflection with mourning, but this year, I dedicate everyday to my precious Goddaughter and niece, Elizabeth "Zelie" Clare Doyle. If you are reading this and are already aware of her story, I apologize for being repetitive. I typically do not share such intimate details, but as I reflect on my year, I truly do not know how to remove this story from the forefront of my memory.

The night of Sunday, August 20, 2017, every student at UC was preparing for their first day of fall semester the next day, packing their bookbag, organizing notebooks, reading syllabi, planning a full night's sleep before the start of a new school year. I, on the other hand, spent the night on the couch, praying harder than ever before, after hearing that my sister, who was 7 months pregnant and lives in Virginia, was in the ER, with an unknown status of her unborn child. That morning, around 6am, my Goddaughter Elizabeth experienced a very traumatic entrance to the world. She did not have a heart rate or breathe for 25 minutes. 25 minutes of no oxygen. 25 minutes of intense compressions on her fragile underdeveloped chest. 25 minutes of nurses running, doctors yelling, and Elizabeth floating somewhere between Heaven and Earth. Four Apgar Tests all with a result of 1, only because a 0 would mean death. She survived. She breathed, and her heart rate rose. That morning, while all my friends were walking to our 8am studio class, I ran to my car and drove across the country.

That first week of classes, I spent living in the NICU at Inova Fairfax Hospital in Falls Church, VA. We sat through test after test, watching every one return with miraculous results. I will never forget the moment of pure joy when the doctors announced that her EEG and brain scan results all returned normal. No oxygen for 25 minutes and somehow she managed to have perfectly normal test results. Doctors told us that if she did not show movement, then her brain was dead. All 12 of her cranial nerves were damaged, and it is common knowledge that if 3 or 4 are damaged, then a person would be dead. How can all 12 of hers be damaged but yet she still have normal brain functions? We prayed and prayed for her to show signs of movement, and I saw her kick her leg for the first time. I witnessed her crinkle her fingers and squirm when we talked and toucher her. I eventually returned to UC, trying to assimilate into my classes while also visiting my family in Virginia as much as possible.

Zelie seemed to improve slightly over the next several weeks. I visited as often as I could, and we remained hopeful that she would overcome her struggles. She was still unable to swallow and had a large excess of fluid swelling under her skin, but she was moving and even began to open one eye.

Flash forward to mid-October, the genetic testing results that were sent to labs two months earlier returned. You could never have prepared us for the news we were about to receive. It was like a semi truck, a plane, and a train all crashed on top of me suddenly at once. It turns out that both my sister and her husband are recessive carriers for a gene mutation that only 1 in 31 million people carry. Baby Zelie is the result of the combination of these recessive genes. She has a genetic condition called Lethal Congenital Contracture Syndrome-7, which occurs in less than 1 in 400 million births. There are only 9 recorded cases in the history of the world (presumably there are more cases, but most do not survive to know the cause), and she is the first case ever recorded in the United States and the western hemisphere. Not only did she carry this genetic condition, but she also has another genetic mutation that has never before been seen. She is truly an anomaly. The effects of this condition cause a person's nerves to become increasingly more damaged, eventually leading them to lose all their senses. Zelie seemed to have normal sensory functions the first few weeks of life, but because of the condition, her sensory functions would decrease into nothing. Despite her responding to our touch, voice, and lights in September, at the time of diagnosis in October, it was found that she had since become deaf, blind, unable to feel touch, unable to swallow, and unable to move any part of her body above her arms (shoulders, head, jaw, etc). I do not know a better way to explain this whole scenario other than that it is one that you only see in movies. "Quite Rooms" in hospitals, comfortable rooms where they tell you that your loved one will die, really do exist, and it is not a place you ever want to go. I watched my sister and brother-in-law weigh the options. Do they bring their newborn daughter home so that their other two daughters may see her? Do they allow her to be transferred to the National Children's Hospital so that she may be studied for science? Do they prolong her suffering, knowing that she will only live in a vegetative state? Do they continue to live at the hospital and spend time away from the rest of their family? Do they let her slip away? I don't know a lot about my future, but I hope I never have to make this decision.

Friday, November 2, it was clear that breathing was becoming more and more difficult for Elizabeth. Every breath became shorter and farther apart. That night, my mom met me in Cincinnati around midnight, and we sped towards Virginia, hoping that we would get the chance to see Elizabeth again still breathing. After 75 days of life, she let out her final breath. Somewhere between Cincinnati and Columbus, the phone call came, and we listened as my sister and her husband said goodbye to their newborn baby girl. The moment came when she whispered into the phone speaker "She's with God now." They say that there is nothing more heartbreaking than a mother wailing for her child. As much as I hurt, I know that the pain is twofold for a parent. That day and the days following, I have never mourned more. As you can imagine, the following days became filled with funeral and burial plans. I am so grateful that I was able to make a small stuffed dog to bury with her that she can be with forever. Zelie now lives at St Johns Cemetery, where my sister and two nieces visit every Tuesday and Thursday.

As much as I am sad, I am happy. I am happy for Zelie. She is the luckiest one of us all because she is in Heaven. What a glorious thought. How beautiful to think that my Goddaughter has been fully restored and is in the presence of God and all the Saints in Heaven. I have realized how self-centered it is of me to wish that she was still here on earth. She would be suffering in great pain if she were on earth, and she would endure that just so that I could see her. Now, instead, she is in the land of eternal happiness and is free of all suffering. I can only hope that someday I may be granted access to be with her there. I can only imagine what a glorious reunion it will be. I am so joyful to know that she is no longer a slave to the pain of the imperfect earth. How beautiful to imagine.

To my sweet, precious, baby Zelie, I miss you everyday. Thank you for teaching me what it means to be strong and for being an example of a perfect life. I can't wait to see you again.

That fall semester, I was away from Cincinnati for a total of 2 months. How I did that as a DAAP student, I have no idea. I really cannot thank my teachers and friends enough. Everyone has flooded me with support, even my fraternity Alpha Rho Chi donated their semester's community service funds to the NICU at Elizabeth's hospital.

Photos of Elizabeth's life are at the bottom of this page after the other photo gallery.

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This may be a nontraditional year-in-review, but it would be a disgrace to Elizabeth and her earthly life if I did not share her story as much as possible.

Despite this being the hardest couple months of my life, I am so much stronger because of it. I grew in my faith and my trust. I grew in my family. I grew up in my friendships. I grew in myself. Somehow, this period of my life has become the saddest and happiest simultaneously.

In the meantime, I have continued exploring my love of adventuring. In the past 12 months, I have completed my 3rd co-op with Carter's children's clothing company in Atlanta last summer, and I have finished my 4th co-op on the men's product development team at Global Brands Group in NYC, working with men's Kenneth Cole and The Frye Company.

I am also absolutely thrilled to begin working on my senior capstone project. I am collaborating with friends in graphic design and industrial design to create an adolescent children's adaptive clothing brand, specifically for children with Cerebral Palsy and other disabilities. There are many exciting things happening in this collaboration, and although it is overwhelming, it is one of my greatest passion projects. To follow our progress and development, follow @adaptiveclothingcapstone on Instagram! Stay tuned to see our adaptive clothing collection, adaptive shoe collection, and accessible website platform and online network come to succession by spring 2019!

In my photos below, you can see some snippets of my passions:

Children: mainly my nieces and nephews: Isaac (7), Ella (5), and Henry (2) from California, and Lillian (4) and Cecilia (2) from Virginia

Hiking: from Ohio, Kentucky, Georgia, New York, and especially my second favorite place in the world (behind Cork and Kerry, Ireland), Maine.

Design: Fall 2017 project, including a leather tote bag and my draping final evening gown

Baseball: Cubs over everything.

Friendships: Making new friends, reconnecting with old friends, always treasuring time together

Photography: Always on the lookout for mood imagery for my design work

***I have taken 8,993 photos this year, so this a very small snippet of my photography collection****