EN’s Beat no. 16

EN’s Beat no. 16

Hello family,

I have so much to be thankful for! Right now I am fifteen years old and back in school. That’s my Savory Chicken Divan Birthday Cake, all caps because it’s a proper noun. Six months ago, we didn’t think I’d make it to fifteen! Now look at me!

Thank you for supporting us again. We reached our COTA goal! Did any of you ever think that we could do this? I didn’t. Again you guys have astounded me with your willingness to serve. You made it possible to go though our journey with friendship and without the financial barrier. But you also are making it possible for kids all over the USA. Did you know that’s how COTA started? In the small town of Bloomington, Indiana,  a young boy desperately needed a life saving transplant. Transplant was new and experimental back then and the hospital required a huge amount of money up front. Of course the family didn’t have that, and once the extended family, the churches, the city found out about it, the funds gradually came in! Unfortunately, it was too late. As their family grieved their losses they decided no child should be denied a transplant due to finances. And that seed money grew into the Children’s Organ Transplant Association! That’s beauty from ashes!

For those of you who were able to come out to our big Thank You Dinner, THANK YOU! From the littles, to the bigs, we are so thankful to you! Please check out our COTA FB page to see the videos Uncle Mark made to inform and thank our donors!

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Meet our campaign Spokesperson, Kyle!
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Look what Kyle bought with the funds! FANCY!!

Thanks, Kyle. You’re the best spokesperson I ever had!! Thank you Uncle Mark Chang. You have a beautiful mind.

Okay, I know it has been a super long time since I have written to y’all. I hope you all forgive me. Getting back into school and living the aftermath is a little challenging to manage.  I asked for more rigorous academics, and I’m getting it!  World Literature and World History from Auntie Yoko the Hahn! Does your teacher spend 4 hours, 1:1 with you, going over every sentence until it’s perfected? Mine does. But does your teacher feed you high quality lunch every week and keep everyone in the house on task for 6 hours? Mine does. She even tells my mom where to sit! I do every single question in my Biology book and am ready to debate when I get the answer wrong. Yes, I still get wrong answers. I dissected a fetal pig and a fish. I sit in on Micah’s Physical Science class and know all those answers too. I taught Raynie the alimentary canal in scientific terms. Ask her to tell you about it! Twice a week appointments are now just twice a month. 17 medications are down to 13. I’ve been sick once and missed a trip to Texas… but I made it to Hawaii! I carry hand sanitizer in my pocket everywhere I go. Need some? Just ask!

The picture of Micah is the doctor telling him to stop eating spicy cheetos and takis.

This blog is our 6 MONTH ANNIVERSARY with this new heart, and it seems to beat and beat. We have been running like a bobcat with a burr under our tails. I get to drum again on the worship teams and that makes me so happy. I get to LIVE! I get to feel the rain on my face! I get to hang with friends outside the hospital! Making the most of our moments, we’ve taken opportunities to share what we have learned, and publicly thank God for all He has done. Wintersburg, Crossroads, CBS, AACF @ UCLA! We got to go personally and thank them! We will keep on doing it, as God allows! At six months we have already talked to a couple thousand people, 3 million if you count the radio show in the Philippines!

Now that amazes me. Who woulda thunk that I would do that? Not me! Most of my life I have stayed away from the spotlight, but being close to death, as I said in my very first blog, alerted me to the fact that we are all dying. I don’t want to have any regrets. God helps me get my thoughts out into the world. I need Him. I blogged. I blogged until I had to stop and be still, then when all hope seemed lost, God provided a perfect heart. I was close, so close to dying, yet God let me stay. He saved me. Here is a funny joke;

So Satan and Jesus are typing up essays and spreadsheets when all of a sudden lightning flashed and thunder rumbled and the power went out. When it came back on the prince of darkness hung his for he had lost everything. But Jesus smiled and opened his word processor right where he left off. He didn’t lose anything, because JESUS SAVES.


Because, I am still here, I get to enjoy church like never before, with a new understanding of what God is for. His covenant, telling us He will never leave us, makes so much sense. He is always there. Even in school, which can be a nasty terrible place,  God is watching over us. Even through months of painful hospital stays, God is watching over us. And I have felt him. I will never be able to explain in simple words the greatness of God. I will never be able to say how terrible heart failure is, how everyday you begin with nausea and end with pain. I can never begin to describe how terrible it is to go through a super long surgery. My dad couldn’t get me to explain. I couldn’t, so he had to try it for himself. After he came to, he would never be able to describe the pounding headache in his brain, or the lopsided cheekiness of his face. I rarely hear him complain how he spent so many nights in a sad hospital, strangled by monitors, IVs and strings all over his gown. Don’t ask him to tell you about being catheterized over and over, because he would be too shaken to talk about it. In fact many of these things, no one can tell you. They are just too jarring to explain. But maybe BECAUSE  it got so bad, God’s presence was made so clear! I felt Him.

It is always best to be flexible so when you must bend, you will not break.              

-Electro Negativity

I love that quote. Whenever I read it I remember how my whole life I prepared for such a catastrophe. I sleep with my clothes on and my back pack ready by my bed. And, if you don’t think you are flexible enough, become flexible. Electro Negativity is a great man and one day I actually got to meet him, we became great friends after that. I am pretty sure I know everything about him.

As I re-live the events of the 6 months, I know that God was watching out for me. The studies count a successful transplant at 1 year of survival.  Now that I am halfway to being a positive piece of data, I am ready to move forward. Nothing, not even high school can stop me, except perhaps puberty.

Everyone is dying, no need to be sad.


Happy St. Patricks Day! Happy Half Birthday to my Heart!

Please excuse the typos from Mom… Little Miss Spelled. She’s my editor. She’ll get one of her own soon.


9 thoughts on “EN’s Beat no. 16

  1. Ian,
    I am so proud of you! Thank you for sharing your journey with us! It has been a privilege to walk alongside of you through all of this. I am so amazed to see your heart shine for Jesus! Last night, when we were at The Rock Church, worshipping together, it was so beautiful to be able to see you jumping up and raising your hands in worship to our great God! Joshy had a wonderful time sitting right next to you. Thank you for your life and testimony!


    1. Hey auntie, thank you for commenting and showing me some encouragement, really great to know that you noticed. Most of the time people don’t want to worship because they are scared of what people think about them. I remember that Tiny Tim in A Christmas Carol, wanted people to see him and be encouraged and right now that is my goal. Thank you for letting me know.


  2. Ian, love you, love to study Gods Word with you at CBS, love to hear you share your answers, love to hear your prayer requests and love to pray for you, loved your willingness to pray for us during our earthquake drill, love your faith in our Creator, love that you live to honor our LORD, love that you trust in Him, love that you love so much, may God continue to grow His love through you and may His love always be your strength, joy, and everlasting peace, grace to you from God above, kelly and family. “Steadfast love and faithfulness meet; righteousness and peace kiss each other.”. Psalm 85:10


    1. Oh my goodness yes, I am fully in love with God. Someday we will have rightousness and true peace. I like being taught be you. You are an encouragement; you govern your household and you stay strong all the time.


  3. WOW!!!!! What words….what faith!!!! I’m blown away!! Be still my soul…..WHAT A GIFT to read the goodness of God penned/printed/typed by you!!!!


  4. This is Jill… just reading Ian’s replies to you all! Thank you for commenting and for enjoying him. I am always amazed at the things that come out of his mouth… or fingertips. I can’t wait for his next post! What do you want him to write about next?


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