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I recall now

how I bent over you, a swan neck curled around your fresh life

clucking mother sounds.

The brothers had come under fluorescent lights,

welcomed into the world by rubber gloves and hospital smells

but you,

you went from waters to water

your slippery self first touched by your father’s hands

in the middle of a Mexican August

in a suburb of a city

in the warm deep.

The drums and the dancing outside the building, a background song to our long work,

it was the celebration of the patron saint of that city

and you came amidst the noise and din

in that quiet pocket of our love.

When he handed you to me

the pearl blue cord curled around my leg and we were still attached

for a little while longer.

You practiced breathing air and I inspected your pink hands,

tiny fingernails

rose bud lips.

My “amen” a long and satisfied sigh…

Fifty months I would have you.

Fifty months to pack in a lifetime of love

To memorize you

and how you tilted your head back when you giggled

and told me Happy Birthday even when it wasn’t my birthday.

Twenty months of blonde curls and then that sweet bald head

and your little walk/run

and how you loved everyone you met as if you’d always loved them.

Oh to jump into one of your videos and just live that moment with you again.

This missing you is messy

and I am not brave like they say.

What else have I to do but face each day because He wills it.

But you my love, you are the brave one

You handled yourself so beautifully through it all.

Your bright illuminated light

still helps me see

in the dark

Image

 

 

~

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.

43 responses »

  1. My heart is always touched with your words and Phoebe will always live on through your beautiful words as well. She’s a beautiful angel whose light shines down on us each and every day!! God Bless you and your precious family and I’m praying for you all!!

  2. Beautiful. Water now tears here. Your words are so touching, know that you are embraced in prayers. Thank you for allowing so many to walk with you through your grief. You are loved.

  3. What a beautiful tribute to your daughter, so eloquently expressed. My heart aches for yours. May God comfort you and give you peace.

  4. Absolutely perfect, your words and sharing of your tender memories. Praying for you, Nathan, and your sweet boys as Phoebe gazes down with love and her bright smile from heaven on you.

  5. Your words are always so beautiful. I miss little Phoebe too and seeing new pictures of her. She is definitely my hero and so are you. You are still in my prayers, always. Love and hugs to you and your family.

  6. Oh my dear Amey…there is a river runing in both sides of my face. I miss Phoebe so so so much. The little one changed our lives. My family in Brazil are sending blessings and crying with you tonight. They called in tears and we cried together. The little one, the precious one, oh how much we loved you even though many in my family and here and around the world never met you.

    Thank you Amey for sharing. You writing keep us here, united as one, the same way that Phoebe left us and the only way our Father wanted us. UNITED AS ONE.
    We love you and your family,

    Priscilla Harle

  7. Beautiful. Heartbreaking. Full of life. Sorrow filled. Together. Apart. Beginning. Ending. Beginning. Forever. God’s promise. Never broken.

    I cry over your words, Amey, even as I cannot really KNOW how it feels. We continue to pray for you, Nathan, the boys, and the entire “Phoebe family of love.”
    Carol & Tom

  8. My heart leaps as I see your post! This time of year is filled with sweet sorrow. I am so drawn to your words because I have realized they help to heal my heart from the loss I have known. This is probably because I have never had the words or someone to share it with but now I have you. God has given you a great gift of expressing your feelings and I thank you for regifting it to me – one of the many purposes God has for all you have gone through.

  9. Dearest Amey, Your words go so deep. They allow us to see into you, see your pain, your anguish and your forever love for dear, sweet Phoebe. We can feel you trying, and coming so close to succeeding, to be able to feel your baby Phoebe’s amazing and peaceful birth. To feel her once again in your arms, feel her precious lips on yours, her sweet arms around your neck, her sweet little voice talking with you. My throat is so tight right now I can hardly breathe and I know what I’m feeling is a tiny fraction of what you feel constantly from your loss. Thank you for letting us walk with you during this time. But all we can do is walk with you and love you and pray with you and your family. Knowing our Father in Heaven and our Savior, Jesus Christ are with you all the time and understand your grief is an amazing gift but the pain, loss and your missing Phoebe’s presence with you on earth is something none of us can truly feel,unless we’ve walked in your shoes. Never let go of the strength and your faith that keeps you hanging on. It’s the only thing that can sustain you right now. I send my love and constant thoughts and prayers for you and your family.

  10. Simple tears. Tears from someone who only hears the depths of your sorrow…but cannot fully know it without personally experiencing it. Somehow, the grieving for a family we’ve never met still comes. There are so many that hurt for your family, but yet their grieving cannot provide the relief sought for. Praying for the God of grace to fill your lives with the ability to remember the happy memories without the great sorrow. And when the sorrow does come…it is bearable.

  11. What a beautiful love song in words that transcend straight to the heart.
    I feel I was there with you experiencing that moment (eternity) in time and space.
    How precious her little life to everyone and even the ones that never even met her.
    She is always in my heart as an example of God’s love, grace and mercy.
    I await my turn to meet her in glory on that soon coming day.
    All praise to our heavenly Father!

  12. We are still praying for you and your family. Thank you for sharing your pain. My sister-in-law just lost her husband in a freak motorcycle accident. Your sincere outpouring of grief and pain have resonated with her. Your faith in the midst of an unendurable loss gives her hope. Blessings as you continue to travel your rocky and painful road.

  13. So sweet Amey. I’m so sorry for your pain. I am praying for you & your family. God bless you all with peace & joy this Christmas.

  14. Amey, If you ever write a book…please let me have the honor and privilege to own a copy…I will pay top dollar, adding extras for you, your husband and your three handsome sons…I cling to every word and just look back at your beautifully and wonderfully created miracle, created in His image and with those bouncy curls…SO precious and precocious…she really touched my life. I know I miss her, so I can just try to imagine how much you do…may God bless all of you ‘special’~~~elizabeth

    Sent via the Samsung Galaxy Note® II, an AT&T 4G LTE smartphone

  15. These words are so beautiful Amey! I think about you and the family so very often. Praying for you all! You are such an amazing woman of God and your story is bringing people closer to God.

  16. Amey – Your writing is beautiful, but at the same time your pain comes through so intense that it brings me to tears. Thank you for sharing these intimate emotions with us and allowing us to share in your grief. I cannot begin to imagine what you deal with daily, nightly, weekly, monthly. Even though I do not know you, I sense you are an amazing mother. What a lucky Phoebe girl was to have such a beautiful spirit as her mom. Those boys are truly lucky to have you as well. Your words keep me wanting to read more, even though the topic is so painful. Phoebe’s story has left me heartbroken. Your wisdom in your words shows strength, even if you don’t feel it yourself; you are strong. Some day you will see that. In the meantime, give yourself the time you need, do what you need to take care of you. Sending you and your family the very best.

    Silvia

  17. Amy, you are a beautiful mother and we all feel the pain of your heart. You are BRAVE…you are…praying that you hear God’s song over you in these moments. Thank you for writing and allowing us to journey with you through the valley. Praying comfort and peace over you…love you, Jeannie

  18. Amey, I often write that you are never out of my thoughts. And it’s true. I think of you in the smallest moments, and your words are constant reminders to cherish the now. I’m bad at that, and yet I know you re-live a million ‘nows’. And I know you re-live those moments – those seconds – of ‘before’ and ‘while’. And it doesn’t matter what I think, or how your words bless me, encourage me, inflame me, impassion me, spur me on. It isn’t your concern or your priority, or even anywhere in your intention in these moments when your thoughts strike the keyboard to consider how your experience is impacting other mothers’ hearts. And why should it? Why should your grief, your pain, your empty arms be so selfishly owned by others? But Amey, one of my prayers for you is that one day you will KNOW and you will see the enormous impressions you have made on the hearts of others. You will know the signature you have left on my mothering. And hopefully you will feel, one day, the sisterhood of mothers in prayer who are lifting you up in their small moments when God so faithfully brings you to mind every.single.day. without fail. Every day. Clearly, with no mistaking. And some of us secretly long for that intimacy with God that you so clearly communicate in your voice and tone. But equally, we all pray – we beg – that God will somehow let your cup pass from us on our journey to that rapport with Him. Oh, Amey. To say that you are lovingly and passionately brought before the Father by mothers who audaciously, ferociously ask for the Spirit’s interceding for you, for we are simply not able to find sufficient words, is such an understatement. Peace and peace and peace.

  19. Beautiful verse for such a beautiful and brave little girl. You know she is looking down upon you and holding you close in her heart. May God bless your family and the work you continue to do in so many hearts. Hugs and love to you always, Lois

  20. Amey – thank you again for sharing your heart, your grief, and your precious Phoebe with us. You are lifted daily in prayer. Your words have inspired us to love with abandon. Your steadfast faith has challenged us. And your illuminated light, your precious Phoebe, has moved us away from darkness and pushed us toward hope. Hope for the future that is infinitely wider, deeper, brighter than all of our good days combined. Hope in a future that conquers everything that is wrong here, and promises beauty, joy, peace, celebration. What comfort to know that Phoebe is there, shining, and healed to perfection.

  21. Your words flow so beautifully..as if some way, we were all with you at the birth of Phoebe Fair. She was so precious..everything I have read of her reminds me of my one year old. She loves everyone as if she had always loved them, too. I feel the intensity and pure love of those words because I see it in my Giuliet. Please know, I think of each of you so often and then I pray. I wish I could hug you..

    Phoebe is probably dancing in snowflakes with her blonde curls..right next to Jesus. Thinking of this makes me happy for you.

    I am sorry to ramble on. You do not know me (obviously) but I know you have so many people praying for you all.

    In Him,
    Cheryl Rayo

  22. Amey – I have been following your blog for sometime, but life somehow interrupted and I’m just now catching up after months of inactivity on my part. I am so sorry. I understand your grief. I, too, lost a child – a newborn. I understand the heart-wrenching sobs, the grief that engulfs your heart and mind and tears at your empty arms. I longed to hold my sweet Emma for a long time following her death. Nothing but the love of Christ and time will heal your broken hearts. It takes time and tears and the faith to know that there is hope of seeing her again in heaven. I look forward to the day I can hold Emma when I get there. We’ll be together for eternity then. You, too, will see Phoebe again and when you do, you’ll be together for eternity. That in itself is something to treasure in your heart. It doesn’t stop the pain right now, but the promise of what’s to come is a light in the darkness. Hold on tight to your other children and your husband. Grieve together and love one another dearly in the meantime.

  23. You all were at the forefront of my thoughts on Christmas Eve and Christmas Day. I said many, many prayers for you and even shed some tears. I hope they were felt. God Bless!

  24. I came across your beautiful writing as I incessantly search for more information about this most horrible cancer. Your Phoebe was beautiful. My youngest grandson, Otto, was diagnosed with at/rt Nov. 3, 2013 and went to his heavenly home Dec. 26 – 8 weeks later. He was 18 months old. I was blessed to have been his “Granny-Nanny” for most of his life. Your beautiful expressions about your love and grief have helped me today. I wanted you to know. Thank you. May God bless you and your beautiful family.

  25. Your so inspiring..your insight palpable. Thank you for sharing and teaching through your grief and healing. Bless u all.

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