Props

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I still haven’t found that chap-stick. The one that Phoebe ran off with just a few weeks before her passing. Knowing Phoebe, she probably tucked it inside a little coin purse she had, or in with her nail-polish stash. All of those things still sit on the shelves in her closet. I visit them from time to time, holding her little shoes and thumbing the wear-patterns on the soles of them or looking through her pink backpack that held all of her everyday treasures: My Little Pony Band-Aids, a flip-open mirror, the last few Beads of Courage she earned at the clinic.

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A couple of days after the 2 year anniversary of her death, I painted her room. The other bereaved parents said I would know when I was ready, and they were right. I had dreaded it; just the thought of it made my stomach churn for 2 years. And then one day, I needed to do it. It became urgent almost, and I made plans to move two of the boys into her room. We listed her bedroom set on Craigslist and discussed what our response would be if someone were to ask why we were getting rid of it. “Our daughter doesn’t need it anymore.” was decided on, and it was true. A few days later when the buyers came to load it on to their trailer, I watched from the kitchen window but didn’t cry. “Just props.” I said under my breath, recalling a sermon I heard years ago about God’s intention for our material possessions. Just props that enable us to serve Him better. The thought that Phoebe had “outgrown” her furniture comforted me somehow.

She goes on, but moth and rust will eventually destroy her props. They will not last. She is the treasure stored in heaven, the furniture can go. It is not her.

These were the thoughts that enabled me to let go. Eternal perspective is fundamental in these moments. It informs every thought I have about my history with Phoebe, and my future with her. I can not imagine the extent of my undoing without a biblical framework for this pain, without an understanding of the nature and character of God.

Shortly after that trailer drove away, I set to work painting. Making space for the boys to spread out a bit, giving Thatcher a room without pink curtains and yellow walls. The brush strokes do not erase her, they simply create room for life as it is here, now. She is safe, and whole, and held, and she goes on…and that is my hope for my life.

 

 

 

 

 

About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th. A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle". We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms. We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated. Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope. Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

30 responses »

  1. Amy, your faith and strength is an inspiration. My hearts crys for your loss of your sweet girl and I keep you and your family in my prayers. Sending hugs!

  2. The term eternal perspective keeps popping up for me this year and when I saw it in your message today, I am beginning to realize God must need me to focus on that. Thank you for inspiring me today, Amy.

  3. Your words make so much sense your strength is so inspiring…. Letting go of props is painful and so beautiful all in the same breath. Truth be told knowing we will be together someday is what keeps me going….Glad you are back I have missed your writing and pray for all of you often

  4. Hi Amey, welcome back. You have been missed by me and my family. And we are here to support you, read your stories, love you even further, pray for you all as we always done and srill do to this day and be empowered by your words and the words of God that He himself speaks to us through you every time. You are on amazing godly woman.
    Much blessings and love. We deeply love you and your family.

  5. Thank you for sharing. She holds a piece of all of our hearts. Can’t wait to meet you all when we meet our glorious Savior:)

  6. “Just props.”
    How powerful. I’m so encouraged by your ability and choice to see heaven, to see wholeness, to see the Spirit through the fog.

  7. Very touching and I’m glad you are able to seperate her ,who you will always hold in your heart , and her stuff that is just that, stuff. Hugs to you as you miss your precious baby every minute of your life.

  8. Amey your words struck a chord for me & while I cannot imagine the death of my flesh & blood reading this has me rethinking the props of my fiancé gone 11 years just little things & those of Gabby my first precious baby I lost here in Africa . Your sharing and reassurance about phoebe not being forgotten or erased in the letting go of props has me feeling a little braver in my decisions yet to come . Hope am one day as brave as u.Thank u for your openness and honesty u r all never far from my thoughts be blessed jules

  9. ohhhh, Amey, thank you for the reminder that material things are just that things. . . props. No heavenly, eternalness in them. I so appreciate these words you write. And this sharing of the journey. Thinking of your sweet Phoebe waiting to greet you with hugs and to tell you where she tucked that chap stick away for safe keeping! love to you

  10. Your words. Such a talent given by God. Thank you for being brave enough to use this talent. Thank you for being vulnerable enough to share it. Love you — Jennifer

  11. Sweet Amey, I was just recounting days ago about how this story of this beautiful little one had captured my heart and my prayers. I was in a very dark season of my own life … navigating loss and chaos …. and you have NO IDEA how grieving with your family helped me to complete my grieving process. I am forever grateful you have shared her story and the continued chapters of LIFE MORE ABUNDANT that you are living out one day at a time. We truly love your family and with these tears that came so easily down my face today … I am remembering her sweet easy smile and the chapters you shared. God is so completely graceful in our human condition … I am blessed and changed to know that your courage, your brokenness, your weakness, your strength and your faithfulness … all of the facets of a beautiful epic tale …
    continue …. all our love from Ohio …. the Bitts

  12. It was lovely to hear. from you.I often think about your Pheobe,and wonder how youu and your lovely family are getting on.Your writing is beautiful and I can see the bedroom as you describe it.Thank you for sharing. Your llife with us. Love. to you all. Pauline xx

  13. Sweet Phoebe will always be in my heart and thoughts. Prayers for you and your beautiful family. God Blessings always. ❤ Danette

  14. Your words are so beautiful! What a great way to look at our earthly possessions…as props for us while we are here on earth. I like that perspective! I think of your precious Phoebe often and pray for comfort and strength for your sweet family! Thanks for giving us a glimpse into your heart. Lots of love to all of you!

  15. Dear Amey, I still think of and pray for you and your family. I cherish the plant that I bought on the way home from her memorial. I call it my Phoebe plant. Phoebe has inspired me to diligently visit the cancer clinic in Waco with my therapy dog every Friday. I have recently been elected as president of the auxiliary board. My husband is a cancer survivor and he also volunteers at the clinic. Phoebe touched our lives in a powerful way and because of that we are reaching out to help others. We have seen some patients win the battle and some lose but all have the common bond of brave warriors. I can’t even imagine the pain of your loss. Just know how much of a difference that precious girl made in the lives of so many. You will continue to be in my heart and prayers. Love, Patty Klein

    Sent from my iPhone

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  16. You’re such an inspiration. Your faith helps my faith. I never read any of your posts dry eyed, but they are tears of gratitude to God for how much strength He’s put in you. Keep being a strong and woman of faith.

  17. Thank you for sharing your beautiful heart in such a painful season. Our son passed in september 2014, just a week shy of his due date. Currently I am 3 months pregnant with our rainbow baby and had struggled to attach or even open our nursery room doors. It felt like betrayal to him. That is until I read your post, thank you for shifting the shadows in my heart & and for the beautiful truth that these objects are props, not my son.

  18. Wisdom… so much wisdom in your words! And so much love to change the sorrow of letting the best of you (your little Phoebe) go to the Lord, into strengthening faith and love and to see it not as an ending, but as a continuation of your life with her… just differently!

    I wish I had a drop of your faith and love…

    Thank you for sharing!

    Hope you’ll post pics of the new room!?!

    Love xx
    a friend in the Lord

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