Gust

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Days when the wind rolls in fierce, and leaves twirl sideways carried on air, and huge gusts knock you back; this is what grief feels like.

You know how hard winds blow against you on those days, making every step laborious..yes, that feeling. It’s not that she’s always at the forefront of my thoughts, though often she is. It’s more that some invisible heavy blanket has been laid over my every thought and action. Every other feeling is tempered by loss in some deep recess of my heart.

I can laugh, yes. I find such joy in my boys, and am even a little lost when away from them, without them there is no one to mother and I find that I need that most of all. For so long, my attention was zeroed in on Phoebe’s many needs, and life is too simple now without a round-the-clock med schedule and shots and water pumps to be turned on. I have a restless energy that begs for a task, coupled with the inability to focus on any one thing or give my full attention to it. It’s much like going in circles or walking into a room several times a day only to forget what you came looking for.

But sometimes I’m brave. Sometimes I go into her room when the boys have gone to bed.

And I rail..

And hurt..

And if I’m really brave I look at her monkey slippers that still have leaves stuck to them from the last time she wore them.  I look through her drawers and hold her clothes, and I see those socks still in her laundry basket that she wore the night she died. And her pajama top, with the pink strawberries, I remember slipping her sweet little arms out of it after she’d gone. It still hangs on her closet door-knob.

I hate these times. But it feels necessary.

And then, at least for a little while, I can go on about life.

I am so proud of our boys. I feel like they are doing well and doing what they’re supposed to. We talk about Phoebe all the time, we wonder what she’s doing today, or Deacon supposes that she’s probably taking a bubble bath (one of her favorite things) or eating peanuts. We share memories or “Phoebe-isms” and we laugh together.  They ask good questions about God and we talk. And some days one or the other seems a little down, more quiet than usual, needing extra space to just feel.

We are easy in the mornings, rather than sticking to our usual “alarm-clock wake up for school” routine. We drink hot cocoa and I read to the boys before we start our schoolwork. We take breaks, I cry randomly, and then we move to the next subject.

So, it ebbs and flows and some days are more productive than others. We are trying to be gentle with ourselves and with each other, which isn’t always easy. It would be nice if there were a set “end date” to grief, but I don’t think it works that way. So for now, we take it one day at a time.

God is near, and grace is real. We feel very cared for by the Father, even in the midst of our sadness.

Thank you for loving us and praying us through,    ~Amey

 

 

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.

38 responses »

  1. O phoebe fair!!! you never failed to touch my soul..i will always pray for your family’s healing and recovery as well…They are very lucky to have you…Evry post..every picture..a tear never fails to fall..I somehow is hurt for your loss…but I cannot imagine what more is the feeling of your own family..How I wish that one day that pain will be gone…

  2. Oh Amey, I love how you speak straight from your heart. You have such a wonderful way with words. I still pray for your whole family every single day. Prayers, love and hugs to each and every one of you.

  3. I hate that you are hurting. No words tonight. Just prayers for comfort in each other and grace that is sufficient. Love you.

  4. Oh the memories you have. Your words are beautiful in writing about your feelings. I feel your sadness. God bless you and your family. May the good Lord continue to comfort you. 🙏💕💕

  5. I my Heart of Hearts, Phoebe is looking down saying Mommy, look up, look what I can do now. Look, no tubes, no pain, guess who I saw today …………. Mommy everything is so beautiful here, mommy, Daddy, just look up it is so wonderful……….. I guess that is what I want for you. I want your tears to be tears of joy, not sorrow and I know that you are not there yet, but that is my prayer for you and your family. When I look at the picture of Phoebe as I post, I don’t see the tube, I see the beautiful eyes of such a special little girl that people all over the world loved! How wonderful is that. It reminds me of the verse, “You have a friend in Jesus” . So many people loved her and even tho we never met her, we loved her too! Praying for your family to heal. I know it is such a hard journey but you still have all the people that Prayed for Phoebe, Praying for you!

    • I love this..I wanted to share words but this post is exactly what I was thinking. Hold onto your memories and her things’ it’s all part of the healing process! I love your little Phoebe, she has showed me so much in such a short time and has exposed the amazing truth of our god and his promises. Strange because you are grieving and I often think of you and her, but at the same time I am reminded of his amazing promise to his children..it all the sudden feels so real! Thank you for sharing your heart Amey!

  6. Always thinking about you and your family. I can’t say losing a precious loved one gets easier. Our family continues to pray for you all. Love Meredith

  7. Have never heard grief so aptly described, Amey! Thank you for putting words to such a heavy feeling…and may God lift more and more of that blanket, letting the light stream in, ’til you know~ finally~light has overcome the darkness.

  8. Ditto to every comment here. No other words to express the way we all feel. Beautiful post and beautiful comments. Praying daily for you and your sweet family. Missing a little girl I didn’t even know.

  9. Sweet Amey, I’m so sorry for the hurt. I too wish for a magic cure & ending to grief. I am mourning my best friend of 35 years. She recently died & there will always be a piece of me the left when she did. But God is merciful & I feel His presence with me everyday. I’m sure she has met your Phoebe & they are close friends now. I think they had similar personalities, as they never met a stranger. lol
    I pray for the grief to end soon & for only sweet memories to replace it with joy & smiles, no more tears. Until then God will hold our tears in His bottle & hold us close. God bless you, Nathan & your wonderful boys. Love & hugs, Elaine

  10. Well said. No. Beautifully said. You have woven a tapestry of emotion laced with grim reality by simply using words. Amazing. Until a person has personally experienced the dark depths of grief, they cannot know how you feel. Sadly, I, too, have been down there. Know that I am praying you and yours through this bleak territory. Drink the hot cocoa and hug those precious boys. It’s the small, seemingly insignificant creature comforts that are the baby steps towards brighter days.

  11. Tears are flowing…I know what your loss is like…I don’t the days/nights of medications…watching over one the way you and Nathan did… caring for her round the clock..my boys were older… they were on their own…but the loss is there..constantly… some days better than others…
    My daughter went with me for the echo last week… I have to go back today to have another one..because the first one didn’t “look right” to the doctor…and I have to go alone for this one…as she is working. But God will get me through it… and HE will give you peace… ONE DAY AT A TIME… I love that song… I have been singing it for so many years now!
    Take care of yourselves…and your boys, too… When my first one passed away all I wanted to do was laundry…. my oldest son apologized for his messy home, but his wife was not the best housekeeper… I started washing load after load after load… he told me .. mom sit down… nope.. just let me do what I have to do… you take care of your sister… However, when HE died 8 years later, there was no laundry to do.. just a motel for a few days until he was buried… but I had a baby grandson (2 years old) that helped me through it… and now I have 2 more grandchildren… I don’t get to see the 3 children that my son had…1 is already old enough to be out on his own…the other 2 live with other relatives. GOD will get you through anything…. I know… HE has ME..and he surely will all of you! You are in my thoughts and prayers! Love, Cecile

  12. Praying you continue to feel God’s grace. You write so beautifully it feels like I’m right there with you, breathless.

    Loving your family from afar,
    Rayleen

  13. Oh my. Oh my. So blindingly accurate, so painfully memorable of our grief over long-dead Maggie Grace. I do love you guys, and I cry as I read your posts, which cut like a surgical knife and yet make God so real, so intense. Keep doing what you are doing, Amey. And keep all you write. Make it a book, even though so many on grief have been written. You are channeling God.

  14. Thank you Amey for your God given gift, your “Gust” has blessed me. We love you Faire family, you are always in our prayers. Remember, “it will be well with your soul”. Your ohana in Hawaii

  15. I can’t imagine… God is so gracious and compassionate. A God of hope full of loving-kindness. Close to the broken-hearted. Praying for you and your family.

  16. No words…just love. My heart hurts so much for you. I know and I know you know Phoebe is so well and happy with Jesus but the sheer pain and grief for the loss in your lives is just made bearable.. by that knowledge….I’m so sorry. God bless you precious Fair family. You will see her again and it will all be good. We, your family in Christ love you too, so much.

  17. Grief never needs to end, but life does someday and the joy will be worth it when we join our loved ones in the presence of Jesus… Know that you are loved!

    Sent from my iPad

  18. Still praying for y’all every day! Thank you for sharing your life with us. Love y’all SO much! Sending hugs from Alabama.

  19. Amey, You are so precious to unknown numbers as you graciously allow us into your life as you share your sorrow all the while weaving into our lives and hearts your sweet memories that are laced with hope and bravery. Your love and trust in Jesus inspires me daily.

  20. We are all praying for God to keep blessing you with strength, and comfort, and memories big and small as you make this part of your journey. You and Nathan are giving your boys a faithful example which is helping them do well. So much love surrounds you from all your family and friends! Peace to you all.

  21. Amey- Sometimes, like tonight, I sit alone and read your post…I feel your words deep within my soul. It’s as if, allowing myself these moments somehow helps me share in your grief. If only I could help carry your burden. Knowing that I can not, I go to “The One” on your behalf, sure that He hears my meager prayer and that He is carrying you.

    Your words penetrate deep within me, touching unhealed fragments of my heart. Seven years have past and somehow there remain little wounds. For so long I was numb…unable to experience emotion. Now, I allow myself this luxury of experiencing the pain. It reminds me that I am alive. Then after being exposed, your words cover my hurts like a salve.

    You have weathered the impact of the gust. And because of your openness, the storm that knocks you back blows gently over me. God is using you to touch me…to heal me. I know that I am not the only one. God is using your deepest hurt to minister to countless others, my friend. Thank you for allowing Him to do so! With admiration- Kina

    >

  22. Oh Amey, thank you so much for continuing these blogs. I look for them every day, now more than ever. I just lost my father last week, without warning, and it hurts so very much! You lend us your family’s faith and strength through your words, and I am so grateful for that. I know that my dad is in Heaven where he wanted to be, and I hope he and Phoebe find each other. (I told my parents about Phoebe, and they prayed for you all.) God has surely blessed us all because of Phoebe and her entire family. I continue to pray for you, Nathan, the boys and extended family. I share in your grief and also remember the happy stories that you have shared with us. Thank you again!

  23. Pingback: Gust | Under the Shadow

  24. I am from Austria/Europe… sorry for my bad English.

    I read through the story of ur beautiful princess and lovely angel Phoebe… And as I am a mother of a little babyboy… I feel the pain and can’t hold tears back.
    You are so strong and gave her the best time on this world. She’s a real fighter and survivor. But she knew when it’s time for a break… She loves you from heaven! She smiles and enjoys the peaceful time up there, and will wait for you. She is now at a place with no pain and no suffering… She got free!
    God BLESS her and your Family. I wouldn’t have the strength to have gone through this long path of healing, suffering and at least, saying goodbye to such a Beauty!
    We will see her in heaven! would love to give her a hug then, if you allow me that. :’-)

  25. My mother’s heart loves each of you. Still praying for you and searching for your updates. Prayer is an amazing thing that binds us together, though we have not met, it produces such love (No wonder the LORD told us to pray for our enemies). You are in our hearts here in California.

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