Even when I knew she was dying it was impossible to soak her up fully. Impossible to save her up for a lifetime of love to draw on.

There came a deep desperation to memorize her smell, record her mannerisms-
Every head tilt, dimple, her shuffle-gait-the heavy weight of her in my arms-the small hand that curled around mine.

I would squeeze my eyes shut as she lay tucked in my embrace and plead with my senses “DON’T FORGET THIS!”

It was something close to panic
g r a s p i n g
for what was slipping away

And the terrible knowing that this would be it
for a lifetime

On days like this I am haunted by loss~

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.

33 responses »

  1. prayers for phoebe and all our little angels that have left us too too soon. Blessings for all our families who will forever mourn the loss of their children and struggle with each passing day. Tears of joy in the the thought of seeing them again one day in another place and another time.

  2. Our hearts break for you. Cannot even begin to know the pain you must feel. BUT I do know that our Heavenly Father knows and understands and I pray that He comforts you as we would all like to, but only as He CAN. We love you Amey Fair and our arms are around you as we pray for you!

    Sent from my iPhone


  3. My prayers are with you always. I cannot imagine losing a child……my children and grandchildren are my life even though we live so far apart. I love looking at the pictures you post when you are all smiles, but you can be comforted knowing she is looking down at you constantly smiling knowing she is in safe place with her true Father in Heaven and that one day you will all be together again, never to be separated. She is your personal guardian angel.

  4. I remember how my heart broke when my husband said he couldn’t remember how it felt to hold our son after he died at 11 months old…fifteen years ago…so, so sorry

  5. i think about you and her often when I hold my 3 year old daughter. I endured cancer during my daughter’s birth and many, many times thought my hugs might be the last…think about the day you will be reunited and you will hold her in your arms eternally…

  6. You made me stop and remember my Carri’s last big, bear hug. It was last time I saw her – two week before she died.
    I remember telling myself to cherish that moment because I was afraid she would return to the self-destructive ways of the past, she did and it killed her. I have that precious hug and my earnest, sincere love for her to sustain me until I get to enfold her again in eternity. The tears and the lump right now are real and painful, and I’m glad to have them because they remind me how much I cared then and do today. Her lifetime here is over and I would not beg her to come back from the beautiful, warm, loving place she shares now with my other loved ones. At 66 years, I look forward to sharing that NEW experience with her as I shared her old earthly life.
    Thanks giving me a moment to pause . . . .
    Cindy Moore

  7. Amey, My heart aches with yours. Wishing we could take the pain away but sadly knowing that’s not possible. Praying for God’s comfort and endurance as you walk through the grief. Remembering your Phoebe girl’s bright sparkle. Sending you a strong embrace. . . wishing I could deliver it in person. — Jeannie

  8. On a day like today when I am supposed to celebrate my birthday, I would gladly give you one of mine to keep!. I am a mom too.

  9. Amie, my heart breaks to see the two of you in the picture knowing your pain. My prayers go up for you and my thoughts are with you. God give you strength and peace.

  10. Just remember that you did everything you could for her. You loved her, you hugged her, you cried with her, you comforted her, you sat there day and night making her your top priority, taking care of her every need and honoring her wishes. This is all she wanted of you, just think of how she must have felt every time you or Nathan held her, knowing that she was in her mom and dad’s arms is the best feeling in the world and she must have loved it…and with everything you did for her and with her, just think of the memories you will have forever. You will never forget her scent or her little actions, there will always be something to remind you of her everyday. Your family will forever have my thoughts and prayers. Love to you all and God Bless.

  11. Dearest Amey, Seeing the beautiful, treasured picture of you holding baby Phoebe in your arms, your kisses in Phoebe’s sweet hair, and actually feeling your words – the knowledge you had that these moments you and Nathan & your precious sons had with Phoebe would, as you so sadly stated, have to last a lifetime. I am overwhelmed by what you and your family have had to face – the shock of little Phoebe’s diagnosis, the desperation of doing everything possible to help Phoebe feel better, get well and be back to her old self, the helplessness, when that time came, of knowing there was nothing else that could be done. The pain, both physical and emotional you express so well with your beautiful words but most of all, your words of undying faith that you will be with your sweet, sweet baby again – what a gift you have and you are, dear Amey.

  12. My heart breaks for you and all of us who have little ones awaiting us in Eternity. Praising our God for Eternity… With love, Debby

    Sent from my iPad

  13. I’m sorry sweetheart. Crawl up in God’s lap & let Him hold you the way that you held Phoebe. Praying for you. Love & blessings, Elaine


  15. Oh this picture just made me break down into tears. I could feel your love for Phoebe. That sweet baby face snuggled into your chest. I feel a sadness that is almost unbearable. I cannot even begin to imagine the sadness you and your family feels. I know as believers we all say we will see those we love again one day, that they are in a better place. But, I know in my heart that any of us would still rather have our loved ones with us. I wish I had some words of comfort, but I just don’t after seeing this sweet/loving picture. I don’t think there are any words of comfort………………

  16. Deep prayers that the Holy Spirit who will keep those memories intact in all your senses for your lifetime washes you in peace as you move through this time now. Love and hugs.

  17. My heart hurts for you. Such a precious child! I’m so very sorry. There are no words…..

    Brenda Rhodes-Sent from my iPad


  18. Still praying. Still crying. Lord,please, as much pain as it may bring right now, do not let Phoebes family forget just how precious a gift you gave them.

  19. Praying and loving you from Breckenridge, Colorado sweet Amey Fair. I pray that today in your grasping you find comfort, peace, love, and precious memories. May your sweet mommy heart be filled today.

  20. I love you sweet Amey and my heart aches for your great pain. I am 77 and a great grandmother. I don’t know how God arranges for us to meet those who are with Him in heaven ahead of us but oh how I hope I get to meet Phoebe Fair, right away when I get there. I know no one can really ease the deep loss and pain but Him…but do know there are so many of your sisters and brothers…me for one…who wish with all our hearts that we could. God bless you. Barbara Booker

  21. Wishing your family all the blessings… and I keep you in my prayers daily. Thank you Heavenly Father and I pray for strength and hope, because I trust in you and your Son Yeshua ..

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