I am reaching out to the world for help with medical and living expenses.
Everyone has a story to tell.
My story started 47 years ago in the mountains of South Korea. My parents were poor farmers, already with a 5 year old daughter and expecting a new baby. I'm not certain if my parents knew that the birth of their 2nd child would be anything but normal. Preparations for birth I'm sure was with a midwife in the house. Imagine the shock and confusion when I arrived in the world. As my Parents described it, "the baby had a hole, a black hole where the pelvis should have been, all of the insides were on the outside." Not knowing what to do and the local doctors were mystified; they took me to the "city doctors" who solved the crisis by, "stuffing all the organs back inside and closed me back up."
My memories of early childhood was filled with being loved, my parents selling vegetables and knick knacks, chasing my older sister Im-Soon who became my closest ally and caretaker; especially after my younger sister Bun-Sun was born. I really wasn't aware that there was something wrong with me until I started to realize that fights, crying and yelling between my parents became more frequent. Somewhere in the 4-5 year old girl psych, I realized I was the source of the arguments. I remember becoming more apprehensive, as I slowly realized I was a "freak." Memories of women laughing, the type of uncomfortable snickers, comments that I looked like a freak and what was my poor parents to do...eventually lead me to the realization that I was not normal. I was frequently ill with bladder infections, had no control of my bladder, hence I ran around usually without underwear. Easier to just let myself wet than to constantly change.
When I was 5 years old, my family moved North appropriately 15 minutes from City of Seoul. Being a child, I really didn't think about how different my surroundings were coming from the mountains to the big city. I was still surrounded by a loving family, became very close to my city cousins who I called "brothers." Later, I would tell everyone that I had an older sister, younger sister and 2 older brothers. Close family members in Korea were referred to as siblings; hence my confusion later when asked about my background.
(6 months or so after the move, my life abruptly changed.) "Soon-Im!" "Soon-Im!" My daddy yells for me excitedly. "Would you like to go see the big city with me?" All of the previous apprehension and caution I carried around with me is forgotten as I am caught up in the excitement of heading to the city with Oppa (daddy). I remember the city lights, speed of cars, people, traffic lights, the hustle of everything so different then the mountain calm I was used to. Holding onto Oppa's hand, bewildered, and amazed by Seoul; I vaguely hear Oppa tell me, "now you sit here, don't move, and I will be back for you."
Night arrives, I am still waiting for Oppa to return.
2010 New Years morning at 8:00am, I receive a call from Children's Home Society. My birth family has been looking for me and has found me after 36 years!
My family Robert and JoAnn Fiss from Red Wing Mn adopted me when I was 8-1/2 years old. What an amazing couple to adopt a special needs older child back in 1978 with 3 of their biological kids! They have been through numerous surgeries (age 8 to 13) from the moment they adopted me. (Other corrective surgery as young adult). Which brings me back to the present. I received diagnosis of Omphalocele, bladder exstrophy, pelvic, spinal defect as an Adult. For years I only knew of my condition as "insides were on the outside." In the last year, I have had re-current urinary infections almost every month, which would reflux into my kidneys. Last September, I had enough of putting on a brave face and unceremoniously went to the Apple Valley Urgent care in tears. Both my kidneys were inflamed and my kidneys were literally swimming in urine.
December 19, 2016 admitted to the Methodist hospital for bilateral ureter re-implantation and bi-cornate hysterectomy. Ran into complications with bowel adhesion due to past surgical procedures. Ureter surgery was done originally 40 years ago when I was 9 years old and over the course of time, the ureters had basically closed up. The re-implantation surgery was to "re-open" the valves to prevent urine from backing up into the kidneys. This surgery won't stop my infections, however it will help to further damage my kidneys.
It has been just a week from surgery, I have had very little appetite, only able to eat small amounts of food. It is a celebration when I am able to have a bowel movement! Recovery so far has been very painful with my abdominal sutures, and the small intestine feeling like it's being twisted.
I am deeply concerned about how I will pay for household and medical expenses, especially with being out of work for 6 weeks on short term disability. I am appealing to the good-will of friends and strangers for help. Please, any amount would alleviate the financial burden.
Thank you for taking the time to read my story and I am willing to answer any questions or comments!
Amiee F. Jones
My parents (my Dad got to meet both biological parents) finally got to meet my Korean parents this past June, when they came to visit me in Mn. My Mom met everybody back in Summer of 2010 in New Jersey.
This picture shows:
Myself (Lydia in front of me-grandchild), partner James, my parents, both my Mom's holding hands, my older son Skylar, my Niece Julie (from NJ-came to translate), my older Sister Im-Soon, my daughter Kaiya, and younger brother Jae-Hoon with his daughter Soy-Up.
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