My names Rene, 28, from Detroit Michigan. I was adopted from Seoul, South Korea at 3 months, to a wonderful, loving family.
I grew up in suburbia, on a circle street with 15 houses, 5,000 sq ft, cookie cutter homes. By no means am I complaining, very grateful actually. To be surrounded by kids my age. There is a lost intimacy now with technology, and laziness! I loved running across the street, knocking on the door, asking if they could come out and play. Kick the can was the stable. I could not have asked for a better childhood.
Everyone has grown up and most have moved away. Off to college, some married. My friends I graduated with from high school also, moved away, out of state, married, kids, all settled down, and on to the next chapter.
Well here I am. On and off serious relationships my entire life, yet I am one of the last to be married, move away, and really “settle down.” The fact of the matter is, I’m OK with this. Why settle, let alone, let it be down? That sounds depressing. I know there are people who share this mindset with me.
In my lifetime, I feel I have dealt with more life changing, unexpected, uncontrolled events than some people experience in their lifetime. But hey, what doesn’t kill you makes you stronger, right?
At age 2, doctors informed my family I had migraines. They were awful as a child. Then I had an MRI. They diagnosed me with a rare brain disease at 17, called Moyamoya. It was so rare at this time, odds were one in two million. I guess I’m pretty lucky then huh? My carotid arteries narrowed from birth, resulting in my left completely shutting, and the right very narrowed. I did not have efficient blood flow to my brain. The MRI showed multiple minor strokes. No one would ever know. The room was silent when doctors reviewed the test results. Everyone was speechless. The doctor said this was urgent, and “lucky” me, seemed to be an extra rare for being older. Most diagnosed with the disease at this time were infants, who had found the disease from a serious stroke, which in some cases resulting in death.
Right before summer, my family and I flew out to Stanford to have a week long of testing, then two bypass surgeries. They bypassed the middle cerebral artery to the superficial temporal artery. Yes, that sucked, but happy to be alive.
After 5 years, the bypasses should have been stable enough to increase the accurate amount of blood flow to the brain. Well, beating the odds again, 6 years later, I had an additional bypass on my left side. “I am lucky, I am lucky, I AM LUCKY..!”
Moyamoya has had a huge impact on me. But I am grateful to have support from my Moyamoya family, who are some of the strongest people I have had the pleasure to meet. Moyamoya reminds me every day, that in a blink of an eye, life could be change. You only have control of so much. Life is full of surprises.
10 years later today. I am healthy-ish. I still have chronic head pain, but it is more of a nuisance than impeding on my life. I have graduated college with a BBA in Business management, work full time as an account manager for an OEM supplier to the big 3 in Detroit, ran three marathons, rock climb, kayak, partial owner to 16 ft Hobie Cat catamaran, own a crazy Egyptian Abysinnean cat (named Hobie duh), and rent a little White House by myself owned by my church. Life is good.
I want to experience more. The world is huge. There are so many different cultures, and different ways to appreciate the little things life offers. I have been given the gift of life to fly, sail, swim, run, drive, hike, and climb it all.
Please join me on my journey across the world. First stop- Phuket, Thailand. Setting sail ETA T-7 hours.
Thank you for sharing your story! I have two children with this disease. We were told at the time their father couldn’t pass it to our kids. Well, not so lucky them they have it. My daughter just went through her third brain surgery in august. So please believe me when I say I understand. This disease isn’t easy, but it has made you stronger than most anyone around you, in ways you may not even realize. Thank you.
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Thank you for sharing this. My daughter is also adopted from Korea (6 months old) and was diagnosed with Moya Moya at the age of 11. We had some awareness of the disease because we were informed that her biological brother in Korea was diagnosed at 2 years of age. We had our daughter tested as an infant but the doctors told us she was all clear so we pushed it out of our minds until her mini stroke last December. She has recovered well (surgery in march) and continues on with no health issues. The reason I decided to write is that I am a counselor (mental health) and I have worked,in great detail, with adoptees. My daughter has had her own challenges along the way and until I spoke with, and read the book of Robert Hafetz, I struggled to understand some of her actions/behaviors. I have recommended his book to many of my adoptees and their parents “Not Remembered, Never Forgotten”. You can even see him on YouTube. The reason I give out this information is because it’s been so helpful for many of my adoptees and for myself as a parent of an adoptee. There is something about your story that reminds me of my own daughter and her tenacity in life. Thanks again for sharing.
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I worked with your mom when these surgeries were being scheduled. I am so happy to read ur blog and love your writing. Thank you for sharing and I feel like you are an inspiration to many. Be safe! Keep writing!
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Thank you for your inspiring story. I think it will help more people than you realize to accept what is and to stay up beat and carry on with your life.
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