Monday, October 24, 2016

Not Your Typical Quinceañera

For as long as I can remember I have been astounded by God's beauty. I am often overcome with the most joy in my heart when I am able to witness the facets of nature, His artistry, and all of the splendor and magic of it. I strive to live a disciplined life so I am afforded the chance to stand present, at least once a day, and take pause to stop and stand in awe and wonder at the intricate details of all the creations and masterpieces right in front of my very eye. I am particularly aware of the color that surrounds us in the plants rooted into the soil of the ground, the thousands of different kinds of ivy that curl up on tiny tendrils-framing a trellis, much similar to the curls that frame the innocence of a young girl's expectant face as she attends her first prom. I stand in amazement at the extension of the branched trees and their ever present posture upwards, a challenge I myself struggle with.

There is a famous quote by Anne of Green Gables where she exclaims, "I'm so glad I live in a world where there are Octobers." I love fall, I love when the air changes from hot to just a tad brisk and where there is a slight crisp beneath my feet as I crunch leaves with every step. However, while my wardrobe repertoire can now include cardigans, flannels, and I can don close-toed shoes, Octobers have been my nemesis, my breaking point for a very long time.

The curse of October and more specifically surrounding around 7-14 days in the middle of the month began in 1995---when I had to have my appendix taken out in an emergency surgery. I was in 6th grade at the time, my first year of middle school, and missing anything seemed earth shattering. Then of course there was the October they discovered my inclination towards kidney stones and my bodies inability to process protein. After a failed attempt at surgery, a doctor telling my mom I was just histrionic, I ended up back in the hospital with a 103 degree fever and the discovery of 8 uric acid stones at once, causing a total of three surgeries and a 10 day hospital stay- all while trying to remain Junior Class President, build the Homecoming Float in our front yard everyday after school, and trying out for the Varsity Basketball Team.

I was also diagnosed with endometriosis, the great nemesis of my life, in the middle of October, my junior year of college- which quickly led to my boyfriend breaking up with me because my life was a bit too “complicated.” I wonder what his life looks like now with children. And of course the October where days after I celebrated the wedding of my life long best friend, my husband and i buried the dream of us ever having children of our own flesh and blood and scheduled "our" hysterectomy.

Well, this October is a rare one of sorts. It is the fifteen year anniversary since my parents made the bold decision to spend all the money they had to save me from the awful chains of anorexia. My senior year of high school, during homecoming weekend, my parents intervened and in an attempt to save my life, they spent everything they owned, refinanced our home, made a decision that we would not have gifts at Christmas, and sent me to Remuda Ranch, in Wickenburg, Arizona. Here I would fight for my life, against an awful disease, both physically and emotionally. A disease, that constantly told me I would never be enough. A disease that ridicules and frazzles me because it is all about control and something that can never be obtained.

My saving grace, in the desert, were two girls named Linze(with a "-ze" back then) and Elizabeth. The three of us forged a bond that no one else will ever be able to understand. We were all admitted within three days of each other so our treatment schedule coincided with one other and when Family Week approached, we all spent it together, navigating through hurt, speaking truth in love, and seeking reconciliation so that upon our return home, we would be better equipped to face life outside the confines of an Intensive Care Prison disguised as a Dude Ranch. Since our timer together, 15 years ago, in that desert place, a lot has happened for all of us. We have all seen each other again, our families have reunited on certain occasions, and while we all aren't the same age-the three of us girls all got married the same summer in 2010.

As with most things- time, distance, life and growing up kept us from being in contact on a super regular basis but when one of us was going through anything at all, there was no question that we would band together. I remember distinctively returning home from Remuda and although I should have been elated as a Senior in High School with tons and tons of friends at my house to welcome me home, all i wanted to do was go to my room, pick up the phone and make phone calls to Tennessee and Maine.

While those girls were my saving grace, I stand by the fact that other than my husband, the Great Saint Nate and Spring Training in Scottsdale with the San Francisco Giants, Arizona's most redeeming quality can be found in her sunsets. Every evening, as we either walked to the building to eat dinner or were walking back to the main house for our next scheduled activity, the sky would literally overcome me with promise. It was there, in those cotton candy skies that God reminded me that He was still with me. In the purple puffs and water-colored arrangements above, He wrote to me messages of Hope. Saying, “daughter, you did it today. you can do it again, tomorrow. And I am with you.”

Fifteen years since that October in the desert and you better believe my body didn’t let me pass that by without one heck of a Quinceañera Celebration. While my parents were off in the homeland of Ireland, celebrating 40 years of marriage, my pale, red-haired, little dysfunctional disaster of a body, threw one heck of a party.

In a traditional quinceañera, a girl is often bestowed with beautiful jewelry and make no mistake I was admitted to the hospital and received a beautiful hospital ID band. Yet even with a luxurious 6 day/5 night stay I never received a second gift of an allergy alert bracelet. Also, in this celebration a young girl chooses special friends to be in her Court of Honor. These are normally her closest friends, siblings, cousins, and the special people in her life with whom she wants to share the spotlight. And while the Quinceañera wears a ball gown, her Court of Honor wears gowns and tuxedos.

But, around here we did things a little differently. I wore pajamas and sometimes had to be in a hospital gown and my Court of Honor, it was really small, because very few people knew I was hospitalized, and I really just wanted them to wear their cozies. Moving forward, I know my Court of Honor will still be very small. If you want to join in, I warn you the waters aren’t always pleasant, the journey is often long and enduring, but that is why we wear only the comfiest of clothes, the coziest of socks, and we huddle together under blankets-with memory foam pillows, tissues for tears, ice chips for the unbearable nausea, graham cracker sticks and applesauce for when we think we can eat, hand lotion for our dry and brittle skin, worship music to calm our aching souls, candles to slow down our rapid beating hearts, and we mostly beg my brothers, Aunt Karen, Somerlyn, and Pastor Dale for comedic relief so the fear does not overwhelm us.

With the Quinceañera, comes the changing of the shoes. Traditionally, this is when the father of the girl gives his daughter high heels in exchange for her flat shoes. Well, sure enough…we are in the process of getting rid of all my shoes in exchange for only brands that are “comfort” brands, ergonomic, fit my custom insoles, and I can wear when my feet have swollen to two to three times their size. The arches of my feet have collapsed and many tendons have come undone but we can’t have a surgery to reconstruct anything because EDS will just undo whatever we try and fix. I must wear slippers at all times inside because being barefoot is just not safe or comfortable. So here, at this 15 year celebration, EDS has us throwing out the high heels in exchange for shoes that age me an easy 50 years more than my birth certificate really states that I am. Yet, still my shoes look younger than my whole body feels, so it’s a win!

Finally, there is the brindis, or the toast with champagne glasses of well wishes. I will typically be drinking water or juice, lemonade if I can get away with it——but you guys keep drinking whatever it is that suits you and let’s toast to the fact that we know each other. That our stories include one another, even the bad days, hard days, downright disappointing and derailing, dreadful, decades (I know, I said decades…but that just may be my story). But also, that we have each other to send pictures of each others babies to, to watch our favorite teams with, to squeeze hands with during times of worship when all we can do is cry, who we can indulge with over cookies and french fries, and give our favorite clothes to when they no longer fit us or we perhaps are cleared for early departure. God, Himself is our greatest gift in that He gave us His son, and then He gave us each other so that we did not have to do this alone. I, myself, need that reminder more than most.

Nate and I, we are hurting, we are scared. But we are not alone. We just have to ask. And although we are burdened we are still available to offer ourselves to others because giving is so much better than receiving. Fifteen years have passed since those days in the desert and I would do anything for Lindsey or Elizabeth. Unfortunately, Lindsey and I sit in similar places right now, both in uncertainty, fighting again for the very life God gave us.

Like myself, this past year Lindsey was diagnosed with a very rare disease. Unfortunately, hers is a type of cancer and they have given her 6-12 months to live. While my timeline is a bit more vague, I ask that you pray for my dear friend, Lindsey in Maine and as she travels to NYC to receive treatment for her vipoma tumor. Pray for her husband, her brothers, her mom, her step dad, and her father. But above all pray for her faith. She has asked me that she would find it. That God would find her and she would have faith and certainty. I pray that I am given an opportunity for the three of us to have one last reunion. Three sisters who fought together to make it out of that desert place and by the grace of God were given second chances and each other.

This Quinceañera marks fifteen years of being a literal chaser of sunsets. I am keenly aware of the sky and the way the sun filters through it. I know God writes to me in the clouds, in the storms, when it is raining, when there are stars, lightening, blue skies, fog, smog, all of it. I worship God because I see Him all around me in nature. His promises meet me there. I hope you see Him there too. Amen.

*This picture is from the second night of my hospital stay….the view from my hospital room. He was there, even when I thought I was sinking.