Day 5

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Rough day. Visited her grave, arranged her flowers a little, blew some bubbles. Came home, cried a lot on her bed. Found her sandals in the basket of her stroller and saw her little peanut shells under the bench on the front porch. Grieving; day 5.

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.

55 responses »

  1. Thinking of you and your family, as I often do. I pray that you find peace in your healing. You have such a special bond with God. I value your strength and courage as you continue to grieve. Your family has been through so much, yet you have such a strong faith in God! Your story is one of such love and I believe that Phoebe has surely left her mark in this world! She touched so many lives in just the short few that she was here.

  2. Grieving with you and the family. I have had friends that have followed Phoebe’s story from the beginning, call me crying. Hurting for you and your family. Be strong. May God carry and comfort you through this time.
    Much love,
    Cruz Family ❤

  3. Amey, I never met Phoebe but she is in my heart as you and Nathan and the boys are in my heart. When I heard the news of her death I fell to the floor and cried my eyes out for you guys. I still cry. My heart aches with yours even as I am so far away. I am praying for you guys contantly. HUGS!

  4. Prayers for rest for you as you go through these days. May Jesus wrap each of you in extra layers of love, as He sends down Phoebe’s love to you in the daily, small reminders.

  5. We grieve with you and yours. Are continuing to pray for all of your family and support group. Much aloha, keever ohana

  6. Oh it is so sad, but please take comfort that Phoebe is with your Maker and there is no more pain. Big prayers and Hugs to you. Tell Aunt Jen prayers for her and all the family.
    Melonie

  7. God bless you all… YOU are not alone … I have cried and cried..and I have friends that have cried and cried… but then we KNOW that Phoebe is a happy little angel in Heaven! God bless you all!

  8. Oh how my heart aches for you all. I pray you will find rest and comfort in Him – our Jehovah Shalom. He is ever present with you just as He was with Phoebe. Hugs and prayers from McKinney, TX.

  9. My heart hurts for you and your family. Thank you for your transparency and for your heart for Christ. I pray daily that He will ease your pain. Phoebe made more of an impact on me & my family than you’ll ever know. Thank you for sharing her.

  10. Oh how I feel your pain!! My heart breaks for you. Prayers for Jesus to wrap His loving arms around you and give you comfort. I think of Phoebe a lot!! Her sweet little face … But find some comfort in Knowing she is not having anymore pain. I send you much love..🙏💕💕

  11. I am keeping you and your family in my prayers. I am so very sorry and can not even begin to fathom the ache you have in your heart. I know you will find your strength in his word to look ahead to the time you will be united with your sweet baby girl,

  12. Thinking of you all and praying for the Fair family. Love and comfort to you as you grieve and fondly remember this beautiful girl.

  13. Praying for you and your family. No mother should have to feel this much pain:( I cry everyday thinking about you, your husband and those beautiful boys. Phoebe is in our prayers everyday as well as a cure for childhood cancer. God bless Meredith

  14. Bless you sweet daughter of destiny, I pray God’s spirit sweeps over you as you continue your journey. We love you and are praying for you, Nathan and your boys.

    Jerri

  15. Grief is so painful, so relentless and so vital. Its course is unpredictable; it will appear when you least expect it, leaving you breathless and drained. But despite the black valleys, the trajectory is always up toward the light. That bright illuminated light. Bless you, dear Fairs. Love and support each other and know that you’re loved by so many and that you possess abundant faith and strength to sustain you.

    • Dear Fairs, Melissa has expressed it so clearly, that I will only tell you how grateful I am that you are continuing to allow us to support you, with God’s love, through this season, too

  16. May the sweet memories over flow as you walk through this difficult time Amey- grieving is such a necessary and healthy part of your journey- take your time Mommy! Your Grandpa wrote an incredible book that gave me great solace when we lost our child! You know the one- Confessions of a Grieving Christian.

    Sweet Dreams!

    Cheri Perry (from my iPad) 1-888-249-9919 http://www.TotalMerchantConcepts.com

    You can have everything you want in life, if you just help enough other people get what they want. ~Zig Ziglar

  17. We are grieving with you! I have followed Your story since the beginning and I feel like I personally know all of you. We are all so broken for your loss but are rejoicing that we will see her beautiful face one day in heaven. I pray daily for Jesus to scoop up your loving family in HIs arms And comfort you in a way that no one else can. You are such a faithful woman Amey and your words and strength have challenged me to be a better mother in so many ways.

  18. I’m sorry Amey. I wish I could have made it to the funeral & met your family. I would like to give you a great big hug. I know the pain of loss & I know that God grieves with your broken heart. Hold on to your memories & just think of her lighting up all of heaven with her presence. Phoebe was such an inspiration to us all. The rough days will pass, just hold on to Jesus’ love. Thanks for sharing. I will continue to pray for peace & comfort for you, Nathan & your boys. Love & hugs, Elaine

  19. Please know that so many others are thinking and praying for you and your family at this very difficult time. My heart aches for you and your family. I will always keep you and your sweet girl in my heart and in my prayers.

  20. Amey and Nathan,
    My entire family, their friends, their church member, their family members and many many, many people in Brazil has followed Phoebe. My cousin called in tears and told me that many are crying and many are grieving and many learned to love Phoebe through the messages posted in your site or by the fowarding emails I sent many times and those without computer would go to the homes of those with computer to read the news of Phoebe. And those that didn’t understand English bought dictionary to translate the messages in your site. And my cousin, who started posting the pictures and the messages in facebook Brazil would translate the messages to Portugues for everyone to be able to understand and to make easier for others that didn’t read English.
    They are all grieving with you, I am too and they continue praying for you and your family. Phoebe was so so so special. And you taught many of us to be better and to do better. You are a strong women of God.

  21. Praying for you. There are no words…We lift you and your family up to God and pray for comfort.

    We will all see her again.

  22. Praying for you and your family, Amey. Praying that God will heal your broken heart. “We are just a breath away from where she is.”

  23. Amey, so many hearts broken all over the world. Thinking of sweet Phoebe and your family constantly. Simply no words big enough to express the grief and sorrow – the words just don’t exist.

    “Don’t cry because it’s over, but smile because it happened.” Little comfort I know, but one day the smiles will come again.

  24. I lost a son in 1987. I know your intense grief. I wish I could help you through it, it is devastating. I cried many times away from my other children and husband. It will get better. I remember saying how will there ever be a moment I don’t think of him. There is and your family and faith will help you. For today it is today only. Smell her clothes, go to her resting place I did, I sat there with my husband at times I was afraid I was going crazy I wanted to dig. Please know God will help you and Phoebe will let you know she is ok .

  25. Oh how I wish I could be there with you all. My hear is torn with grief for your family. I keep telling myself that Phoebe is with Jesus and her Heavenly Father now, no pain, just unimaginable joy. She is waiting for you to come home. I continue to pray for God to wrap you all in His arms and carry you through this time of mourning.
    Psalms 36:7 – How precious is Your steadfast love, Oh God! The children of mankind take refuge in the shadow of your wings.

  26. How can a human mind assume that your little baby is with you, at home, and then the following day is no longer on this earth? it is so difficult !! i don´t think our human capabilities allows us to understand…We can just trust..and let time show its sweets prints in everything she left here before leaving..and then one day when God allows you to go with her, then you will understand, and everything would make sense..

  27. Amey and family. I can’t comprehend your loss of precious Phoebe.. the only thing I can offer is prayers to our LORD to wrap you and your family in His loving arms and give you prace. GOD bless all of you

  28. Amey, my heart aches with yours. I’m praying from valley of tears with you. Praying for His comfort to surround you and hold you close. Rest your head in His lap, Amey, and let Him have all your grieve. . .all your tears. . .and emotions. Praying God’s comfort and grace over you. Sending you a strong hug from one momma to another. Love you — Jeannie

  29. Dearest Amey, you are not alone in your grieving, but no one is grieving like you are. Praying for you so, so much. I cannot even begin to imagine the depth of your pain, but our hearts are broken for you and your beautiful family. Keeping you in constant prayer hoping you feel His undeniable presence and love for you.

  30. Dearest Amey, As I read your thoughts from yesterday and your unbearable grief for your sweet baby Phoebe, I could clearly envision our Heavenly Father and his Beloved Son, Jesus Christ, tenderly holding you as we hold our loved ones when they are hurting. Heavenly Father and Jesus are holding you as you cry your heart out and they understand your incredible pain. Gently holding you and caressing you and enfolding you with their love while you go through this difficult grieving process that will never quite go away. I, like so many others, have been touched by your willingness to share your family’s journey and letting all of us bear witness to your amazing Faith and trust. Loving thoughts and prayers will remain with your family forever. God Bless You, Amey

  31. As I read all of the messaged Your family its loved by the world
    many different parts of different
    Countries.
    I hope you feel the love of all people and All the Prayers.

  32. We are still praying for your family that God will comfort you in your grief and will give you his piece. We love you….

  33. We too lost our only girl (we have two other sons) this past April and I call those things you mentioned “Grief Bombs.” You didn’t expect to see something that could trigger such an avalanche of grief and emotion and an unrelenting feeling of loss. I have cried with you guys and my heart aches so deeply for you, I can’t hardly handle it. I lift you up to our sufficient Jesus who is sometimes our only light in the darkness. Psalm 139 reminds us that even the darkness is not dark to him. Praying for you.

  34. oh Amey I’m so sorry. May God give you some peace and comfort. I only wish I could say something to help. sending thoughts and pprayers your way.

  35. Whether you want to or not, God will allow you to keep taking in air and breathing one day more. There is nothing that can remove you from this deep well of sadness except to look up to the cross. Our faith allows us to see her again, but it does not remove missing her so bad. Hang on. Each day is another day closer to next year. A year from now you should be able to think of her and smile, not cry so much. Until then, God bless you. You hurt because you love her so much (love doesn’t end with death, you still love her, and she still exists). Been there. Never want to be there again.

  36. Amey, I have no words except how good it is to know you know the One Who does have the words.Along wih so many others I have prayed and cried and loved Phoebe and you and your family for nearly two years. Oh God she is so precious as are you. I am so sorry. I am 77 years old and have known a lot of grief as well as joy and want so much to comfort somehow…all I know to do is to pray and I won’t stop doing that. God is not a meanie…..say it Amey and we are not afraid.

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