here we go!

A lot has happened in the last 24 hours, and it’s only now that this whole process is starting to feel real, like it might actually happen instead of being this obscure event that may take place in the future at some point. First and foremost, my mom and stepfather did come over last night and I was able to finally come out with my big secret. To say it went badly would be a gross understatement. My mom would barely look at or talk to me when she came in, and things quickly went from bad to worse.

While my mom commends what I want to do, she doesn’t understand why I would voluntarily have an organ removed from my body. She’s worried and frustrated and angry that of all the ways I could help people, this is what I chose. She threw an endless list of hypotheticals my way, none of which could be quelled with any sort of realistic explanation. At first, I was aggravated with the whole reaction. I felt like it was dramatic, overly emotional, and totally irrational, and that no one can live their life according to a bunch of what-ifs.

But the more I thought about it, the more I understood her perspective. My mom comes from a generation of people who avoid surgery at all costs, who do not willingly undergo it with no personal health benefit. Science has come a long way from my mom’s day, and where I see minimal risk, she sees endless opportunities for trouble.

I also began to more clearly see where her over-the-top reaction was coming from: love. Something I got from my mother is my all-or-nothing attitude. When we do something, we do it big and we do it all the way. My mom loves her family, especially her children, in an all-consuming, every-fiber-of-her-being way, and while that often leads her to needlessly fret over every little thing, it also makes her the amazing mother she is. To my mom, worry equals love, and if we use that standard of measurement, my mom loves like no other.

Ultimately, my mom made one thing clear: she does not give me her blessing, nor will she be happy about this process. Not now, not during, and not after. She does, however, lend me her full support and will be there for me and with me every step of the way. My mom may frustrate me with her worrying, but no matter what her opinion, she has always stood by her family. And while I would love her approval, I know I couldn’t do it without her support, so I’m happy to have that at the very least.

Also within the last 24 hours, I received confirmation of my appointment at New York-Presbyterian/Weill Cornell for this upcoming Monday! I am so excited I can barely focus on anything else! And, to make it even better, both my mom and stepfather have agreed to accompany me on my big day of tests, both to show their solidarity and to keep me sane during the hours of sitting around being poked and prodded.

The day before my testing, Sunday, I have to do yet another 24-hour urine collection (I’m a real pro at this point) and then keep that sucker on ice right up until my first appointment Monday morning. I also have to fast from midnight Sunday until only-God-knows when on Monday (I love food and I love lots and lots of water, so fasting is never fun). Here’s what my day will look like:

  1. Arrive 9am – meet with Julie (my coordinator) and turn in urine sample to someone named Jackie
  2. M.D. visit
  3. Blood tests
  4. Meet with social worker Ilana Silver
  5. EKG
  6. Chest X-ray
  7. CT of pelvis and CTA of abdomen
  8. Finally eat everything in sight (should be around 1:30pm – more than 13 hours of no food or drink!)
  9. Long break – catch up on work, blog, sleep, etc.
  10. Head back at 6:45pm to meet with Dr. Todd Loftus for a psychiatric evaluation (I bet a lot of people, including me, would like to know the results of this one.)

All in all, my testing should end around 7:30pm. Talk about a long day! But I’m super excited and extremely anxious and cannot wait to get there and get my results shortly thereafter. I’ve heard that things happen pretty quickly from this point on, so I’m trying my very best to enjoy every second of the journey. I feel as though yesterday marked the day it truly began, the day it all became real, and it’ll be over before I know it, I’m sure. Until then, I’ll focus on my upcoming 26th birthday (January 23rd) and vacation to St. Lucia (woo hoo!) and be thankful every single day that I’ve been granted this amazing opportunity – and an even more amazing support system to share it with.

 

‘Children in a family are like flowers in a bouquet: there’s always one determined to face in an opposite direction from the way the arranger desires.’  [Marcelene Cox]


4 responses to “here we go!

  • Teri Navickas

    I remember that day like it was yesterday, it was like a strange treasure hunt and I had to get all of these things checked off on my paper- a bit surreal. My family history was similar, but the older I got, the more I learned to rely on my instincts for my decisions and have grown exponentially with each decision. Yes, you are making a big one, but my feeling was that the risk to my own health was minimal, and in retrospect, I still believe that to be true. Follow your heart, organ donation is a process that oddly gives as much if not more to the donor as the recipient. P.S. St. Lucia is beautiful!

    • melissaarlio

      Thanks, Teri! It’s nice to hear that other people went through what I’m going through with my family and still didn’t regret their decision. The whole time I was talking with my mom, I kept thinking, ‘Am I supposed to say I won’t do it if this is how it makes her feel?’ but I just couldn’t bring myself to say it – I want to do this too badly. I truly feel like it’s what I’m supposed to do. Anyway, I’m really looking forward to the testing, weird as it sounds, and of course I’ll keep you posted!!! Oh, and St. Lucia – cannot wait!!!!!

  • Gary Arlio

    I pray for your good health in this journey. I also wish the same for the lucky recipient. I know I told you this before but I wish I had just a small percentage of your courage.I could not be more proud of you. I love you with all my heart. G Unit

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