Day 6

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A couple of weeks ago Phoebe and Deacon were in my room playing. She took my favorite lip balm off my bedside table and asked if she could have it. I hesitated, after all Phoebe has about 26 tubes of sparkly Hello-kitty chapstick. I knew she would set it down somewhere and I wouldn’t see it again, but I couldn’t tell her no, so she toddled out of the room happily on her way with my lip balm in her clutches. I haven’t seen it since then, but I know one of these days I’m going to come across it and cry like a baby. For now, it’s a mystery where my little Phoebelicious put it and I like it that it’s here somewhere, out of sight right where she left it. Grieving; Day 6

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.

35 responses »

  1. Love and prayers coming your way…Day 6 means you’re six days closer to seeing Phoebe again…all in God’s perfect time…six days closer to understanding it all.

  2. Continuing to pray for you. I saw a little girl toddling across the park today and thought of you and Phoebe. I can not imagine the pain of letting her go to Jesus so early in life

  3. I hope you are writing Amey. Although these little things are Breaking your heart today, they Will bring you warmth and smile Sometime in the future.

    Sent from my iPhone

  4. Amey, everyday will become easier and easier but if I am grieving for Phoebe this way,, I can’t possibly comprehend how you are feeling and Nathan and the boys. But God comforting us, you better believe. And will help us find that lip balm and when you do, we will celebrate again. For I know Phoebe is watching you and smiling down, and saying to Jesus…. I hide it really well, mommy is so close but still can’t find it. Haha.
    We miss her too.

  5. She left you a treasure hunt! Left some games to play with her!
    Live and prayers to you and your family. Missing Phoebe
    Melonir

  6. Amey, you know that children are so amazing in I bet Miss Phoebe knew that you would one day find the lipgloss she hide so well:) I know when you find it you will cry and we will cry with you. I have only been following your journey since Phoebes relapse but I feel so close to you and your family through this blog. I respect your family so much for letting us in and know that you are amazing. I can’t say that it is going to get easier but know that we are all here with you. Much love and Aloha Meredith

  7. Oh Amey, I feel for your entire family and friends. Words just can’t begin to express what kinds of feelings I have for your loss. I just know God brought Phoebe to be an Angel. I imagine you will never “get.over” this…you will learn a new.way.of.living. do.what you need.to individually, as a couple and a family…everyone will process differemtly. Take care.

  8. God bless your sweet heart heart Amey and Nathan’s and the boys. There is no way through it except right through the painful middle. My love and prayers to all of you. Marilyn from TN

  9. We r praying for you n your family every day. I love that u r sharing n cherishing every memory for telling these stories n sharing the depths of your heart I know will bring comfort n cont peace. Not just to you all but the many lives you all have touched on this journey. I can see her in my minds eye heallthy happy and basking in the presence of our Lord. Blessings to you n your family. Love Frank n Pam.

  10. Dear Amey,
    We’ve never met , but a group of us in Houston started praying and following your journey and of course, fell in love with Phoebe, like everyone else.
    I am so glad that you are continuing to write. I hold you close to my heart and I just believe that you are going to have a future that will have many children and books written that will heal many broken people. You have such a gift and so much wisdom and even in the midst of your darkest days, you reach out to others. You are much loved by a lot of people and we are praying for you. You are strong and courageous, even though you may not feel that way. Keep writing…

  11. Thank you for continuing to write Amey. I hope it helps you! Seeing your posts lets me know how to pray for you and your family as you walk through your journey of grief. The Bible encourages us to bear one another’s burdens but I think all too often we crawl in a shell and don’t know how to allow others in so that they can help us. Your writing is helping us to be there through some of your pain so we can cry with you and pray with you. Thank you for your example. I’m praying that you’ll daily see little bits, if not huge mounds, of the perfect plan of our loving Father in all this!

  12. Thank you for sharing your story. Please know that you have deeply influenced our lives by your faith and drawn us closer to Our Lord! You are doing his will in the midst of your grief!

  13. What a sweet memory. I imagine Phoebe will be giggling when you find it, saying “Yay, Mommy!” I will echo others and say thank you for sharing your heart with us. We do pray and want to help bear this burden, even though we don’t know you. So many of us have come to love you and your family – and sweet Phoebe. It is an honor and blessing to intercede for you all, because in so doing, we grow stronger in our faith. I believe God will use Phoebe’s life and legacy to draw others to know Him. Keep holding on to His hand, keep moving forward, even in this valley. When God pours out his blessings like rain, the valleys fill first.

  14. Precious story of your sweet Phoebe. Yes, it will make you sad when you find the lip balm, but the happiness will be much greater. She will be right beside you in spirit laughing that you found it. Praying for you all daily.

  15. Oh how I cry like rain through sunshine, Dear Amey. Thank you for sharing such a sweet memory. I could just SEE her toddling out of the room. “Thought I saw her walking/Up over the hill…”

  16. Just put a note out with your name on it to remind me to keep praying for you and your husband and for your marriage during this difficult time. No words of wisdom here, just lots of praying.

  17. Oh Amey! what a sweet memory now and a connection with her when you find it. I lost my parents over the last 6 months and it is so wonderful when I find items that bring back SOOOO much!!! The memories NEVER die!!!

  18. John 11:33-35
    33 When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. 34 “Where have you laid him?” he asked.

    “Come and see, Lord,” they replied.

    35 Jesus wept.

    Jesus is weeping with you Amey and Nathan. He mourns along side of you and knows your pain.

    Praying and praying.

  19. I cannot offer you anything in your grief but Jesus. He knows what grief is and will comfort you.
    I pray that you both allow Him to come in and fill that empty place in your heart.

    If I was there I would give you a big hug.

  20. Hello Amey, I know that you’ll cry, I really do.
    Today my grandson Colin wanted to play with Maddie’s toys and I cried too.
    Sending Mad Love to all of you!!

  21. Awwww…so many memories, so any tears… So wonderful our Lord will comfort all of you. It hurts so badly, I know. How does life go on? I know you have the boys and hubby to care for, so be strong in the Lord…as I know you are.

    Sent from my iPhone

  22. Dear sweet family all of you are in my thoughts and prayers. No words can ease your pain yet your memories bring a peace and happiness God bless all of you always never forgetting<3

  23. Amey – thank you for your vulnerability and deep sharing. You have a gift of writing as you have offered Phoebe and your familiy’s story to each of us. Your words are inspiring through the depths of grief and daily life. You, Nathan, Benjamin, Averic, and Deacon remain in our prayers. Phoebe’s life comes up in our conversations as we talk about our Hannah in heaven and Phoebe. We thank you for continuing to share your story as life changes daily for you in the depths of sorrow and putting one foot in front of the other. Sending you love, encouragement and prayers for endurance. Love to you – Rachel and family

  24. Sending loving and comforting prayers your way from Breckenridge, CO.

    Father, please surround Amey, Nathan, and the boys with supernatural comfort and peace tonight. I lift them up to you in faith that you can and will ease their pain. Please help them to feel your love and guidance as they try to find a new normal. Fill their minds with happy memories of Miss Phoebe that will lift their spirits. In Jesus’ name I pray. Amen

  25. Oh how all of you are loved by so many who’ve only met you through your sharing Phoebe’s journey, and how you’ve impacted our lives in ways God only knows right now!

    What a sweet treasure hunt searching for your chapstick…

    Meanwhile, there’s breath and life and love to sustain each of you (and we who love and pray for you, too)!

  26. I never met Phoebe, never even knew about her before a week ago, but I weep with you. In three days my husband and I will visit a tiny grave of our little boy on what would have been his first birthday.
    My greatest consolation is the sure hope that we will all meet some glorious day in Heaven.
    I pray that God will carry you through the waves of grief that come, and that He will use this tragedy to strengthen you, and let you see how your daughter’s life has blessed the lives of thousands.

  27. It’s been ten years since my daughter’s passing, and I still find little things that she’s left behind for me. They are sometimes such a mixed blessing. They bring such joy to my heart but can leave a sting of emptiness, as well. The most precious that she’s left me are love letters. I pray that I never stop finding these little precious gifts of love, and I pray that you are filled with joy and sweetness when the lip balm surfaces. I pray it finds you when you need it most.

  28. Sorry for your loss. Phoebe was beautiful and seemed so bright. I have three as well and our last baby was born with brain abnormalities. It’s so emotionally hard I wish I could make everything just perfect for her. While pregnant the doctors told me she was going to be a vegetable and may not make it she is doing good and has made our life worth living to the fullest. I think of the pain your in and I just can’t stop crying. My good friend lost her son and said All Children are Gods Gift from him so we need to cherish each day because we don’t know how long we have that gift. Only time will heal. I will for you and your family to stay strong and united and for our newest angel Phoebe to come please come watch over my baby as well.

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