Emily's Journal: What Defines Your Life? ✍️

Font image that reads, “The following is a journal entry from Emily that is being shared with permission from her parents. This is a look into her unfiltered thoughts about her outlook on life and how she wanted to be defined... “

Thursday, June 19, 2003

I read an article about a girl with CF (Cystic Fibrosis), and here are my comments:

I don’t want this to define me. If someone wrote an article about me, I want it to be about my voice or work or something awesome I’ve done - not my CF. It would be like writing an article on my blonde hair. I want my legacy to be my library, my wit, my work, my music, my laughter, my friends, my pictures, my relationships, my loves. I want to be remembered for my fortitude, my talents, my love of God, children, self, my self-reliance, my respect of others, my love of life and not the fact that it may end too soon. Defeats and circumstances are not a legacy. The life ones lives IN SPITE OF THEM is my legacy. That is what I want to live forever - these words, not the fact of my life. My spirit. My heart. My life, defined on my own terms and lived my way. Free. Without apologies. Passionate. In love with life. And with no excuses or borders…just my free, passionate, gifted, willful, personal self. Just me.

Emily Michele DeArdo.

That’s me. A daughter, sister, niece, cousin, granddaughter, best friend, friend, writer, musician, confident, EAI member, Catholic, devout, actress, lobbyist, politician, collector, debater, singer, lover of all the life that God above gives me to live. God is so good to me! I am defined on my own terms and by my own words.

I am so much more than this page (her journal) can contain. I am a daughter of God and I live to do His will. I am loved and happy and unique and passionately in love with life. I want to drink it, absorb it, eat it! All of it! Even the “bad parts.” Nothing is bad - all of it is part of the mosaic of life. Life is to be lived as richly as possible until we go to live with God forever. How happy that will be! Life beautiful, wonderful, fabulous…and I don’t ever want to be told otherwise. My life is mine and I love it! CF is part of it, to be sure, but it doesn’t define me. I define me! And, oh, how I love life!

“You have to live the
life you’re given,
and never close your eyes
you hold on, and stare into
the skies, and burn against the cold!
For any moment
you might find the gold!”
- “Gold” by Linda Eder

How true! How true!
I LOVE LIFE!

Font image that reads, “While you read, did you think about how you’ve been defining your own life? Have you been limiting yourself or letting others label you and your potential? In the wise words of Jane (aka Nightbirde)...”

Quote from Jane Marczewski (aka Nightbirde): “You can’t wait until life isn’t hard anymore…before you decide to be happy.”

What You do with Your Years (Anniversary Edition)?

Battling Your Circumstances with Joy and Gratitude

Emily always said she was grateful for every additional day of her life that her double lung transplant back on July 11,2005 gave her. She wrote about it constantly, in fact, she wrote a whole book about it that was published in 2020.

Today would have been her 19th lung transplant anniversary, but since she has passed on from this life (and is completely healed praise the Lord!), we wanted to inspire you as a reader to think of how powerful her story really was and continues to be. She was not supposed to live to see 24 years old, but with her lung transplant, she far outlived her prognosis. And boy, did she live and love life! This blog entry from 2015 tells of all the moments Emily was so grateful to experience and witness with her extended lease on life. It’s important to also note that Emily’s donor Suzanne was very dear to her because she knew for one to live it meant one had to die and she never forgot to thank her and her family.

An image of Emily on the day she was being released to come home from the hospital post surgery.

If you’ve never seen this 5-minute video from Nationwide Children’s Hospital that covers and overview of her journey from diagnosis to receiving her double lungs transplant surgery, please take a moment to watch and hear about how pivotal this moment that brought hope was in her life.

Emily’s outlook on her diagnosis did not relegate her to living her life in a lesser way. In fact, it propelled her into pursuing things she was more passionate for (like writing her books and blogs) and enabled her to grow deeper in her relationship with Christ. She even wrote this article a little over a year ago talking about the blessings and hardships of transplant patients that is a transparent look through her perspective and the facts.

Text image that reads: We spend out. We don’t hoard our time or resources. We invest them in people, in loving others, and in community.

So the real question is, knowing we all have breath in our lungs today and the precious gift of life, how does God want you to live your years? Not many of us will go through a transplant like Emily did in our lifetime, but if you’ve accepted the gift of Salvation, then you’ve gotten a spiritual transplant.
Consider Romans 6:8-11 below:

8 Now if we died with Christ, we believe that we will also live with him. 9 For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him. 10 The death he died, he died to sin once for all; but the life he lives, he lives to God. 11 In the same way, count yourselves dead to sin but alive to God in Christ Jesus.

So what should we do with this renewed life on earth that extends into eternity? Maybe love our families and friends well and making the most of our time with them? Give generously of our time, talents, and treasures to others? Live each day like it’s our last on this earth and tell someone about His amazing gift of salvation? Or maybe all of the above? Everyone’s journey through life looks different, but the focus should always be on Christ and furthering His Kingdom through gratitude and love - something Emily did well.