This is How it Goes

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I haven’t known what to write lately. My thoughts don’t feel cohesive and I’ve been distracted by life. We seem to be finding a new rhythm; something I’m thankful for and hate all at the same time. I don’t want a rhythm without Phoebe/ I need a new rhythm to fill up her absence. It’s a sad limbo.

Our days have been filled with school, gymnastics, Bible club and church on Wednesdays, and counseling for the boys. I think we are doing what we are ‘supposed’ to be doing; we do life and then we stop to cry when the longing for her overwhelms us. We share memories of Phoebe’s silly antics or phrases around the dinner table and laugh with eyes brimming with tears and it is good. I sit on her bed and let the hurt come when it’s obvious I can’t move forward until I do.

It’s strange as an adult, to cry like I did when I was a child; that heaving, weeping that leaves you spent and almost hiccupping at the end. I am often surprised by it, by the intensity of it. But I always feel better afterward. Grief demands it’s own way and at times I am powerless to do anything else but let it come.
We are all moving through this time in our own way. Nathan has found a lot of comfort lately in serving others; he has spent time with the men’s the group at our church doing various projects for widows or those in need, last week he shared at a local Spanish-speaking church who has partnered with us in ministry in Mexico, and now he is working to promote missions-awareness in our church. He has also started back attending staff meetings at YWAM and has a meeting this week to pray about future ministry goals. He and Benjamin (11) are coaching an Upwards Basketball team of 1st and 2nd graders and really enjoying that as well. It has been good for him, and for us, to focus outward.

The boys have started counseling on Thursdays and have enjoyed it so far. They each grieve of course, in their own way. Deacon lamented not playing with her more the other night and wished Phoebe was here to take a bath with him. “Oh why didn’t I play with her more while she was here?” he said..poor little guy. He had so many conflicting emotions throughout Phoebe’s illness and I imagine he’ll be working through those memories for years as he matures. Averic spends time in her room thinking about her; he spent the most time cuddling her to sleep in the evenings or spending the mornings in her bed with her since he is my early riser. He has so many sweet memories of those times to draw from. Benjamin’s grief works itself out through tears, random tears here and there and sometimes when he least expects it. He gets frustrated with that, but I encourage him to let it happen because it needs to happen. He understands the most and as the oldest has always taken on a responsibility for his younger siblings, so he has a road to walk. We all do of course.

We have enjoyed spending time with friends, new and old alike, and we feel blessed to have the support system we do. I have been focusing on home school and trying to get back up to full speed in my motivation while still giving myself permission to not be super-Mom right now. I have also been praying about some writing projects and mustering up the courage to step out in that area. In the evenings I have been mentally planning our spring planting efforts and dog-earing my seed catalogues. So, this is life and grief and learning how to forge ahead. Some days are better than others, some are full of hope and possibility and others are just for surviving.
I do love to talk about Phoebe, and I love to hear her name spoken, we all do. I appreciate it when people feel comfortable talking to me about her, a special memory, or some way she has impacted their life. It just feels good to talk about my daughter, who is still alive, just not here. I fear the day no one talks about her anymore. The thought that brings me the most comfort is imagining what she is doing today or what Christmas in heaven will be like for her this year. I know she would not want to leave His presence if given the choice, and that gives me peace.
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Thank you for loving our family, 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.

35 responses »

  1. Phoebes life and your family have majorly impacted my life. I remember you sharing how you had 2 miscarriages in 2011. I can’t help but think Phoebe is happily playing with those 2 siblings in heaven, all together in His presence.

  2. Love you all. Thanks for sharing. I miss her sweet self. When my dad died, when I was 23, I remember knowing that with time the pain would lessen and I remember not wanting that to happen. The pain was a tangible reminder of my Daddy. It seemed to be all I had and I resented the fact that that would lessen. I have been praying specifically for the boys that God would heal any perceived guilt they might have and it sounds like He is doing that for Deacon especially. Continuing to pray for all of you. I still have on my Phoebe bracelet. Love you all and am thankful that that sweet little girl is dancing with her Savior.

  3. Please find comfort in knowing that Phoebe will always be remembered and talked about. My daughter has been gone for 12 years now, yet – she lives on – through memories and conversations about her, to this day. When I run into someone whom I haven’t seen in awhile, my daughter is always brought up…and not by me. She, and Phoebe, have left an ever lasting footprint on the hearts of those they’ve left behind.

    Merry Christmas, Fair family.

  4. I am so happy to hear of your beautiful thoughts and how your family is doing! I thought this may be difficult holiday. Oh to be with Phoebe in the presence of Jesus!

  5. I think about Phoebe everyday and will make a vow to continue to let her little light shine!!! I pray for comfort for your sweet boys and you and your husband!! And just like “Tracy” said…”Oh to be in the presence of Jesus” How sweet and fabulous it must be 🙂

  6. Amey. Thank you for continuing to share and be so transparent with all of us. Phoebe will never be forgotten. Sending you love from Calgary Canada.

  7. Love hearing about “LIFE”, with the Fair’s! THANK YOU, Amey! I can not think of a day that we don’t think or talk about Phoebelicious!! Her CHRISTmas will be perfect this year with Great Grandpa and all the others who love her in Heaven 🙂 You take care of yourself and your very special family!

  8. Just yesterday I was going through my blog and saw Phoebe’s picture and thought about your family. Just looking at Phoebe made my heart ache and my eyes well up with tears. The tears are for your family and knowing this is just so tough on you. Thanks for sharing your healing/grieving journey. I am praying for you as often as the Holy Spirit reminds me and that is often.

    Blessings.

  9. Merry Christmas May God comfort you in the loss of Phoebe and give you joy amongst the tears. You are so loved by many many people. I hope you can feel our love during this season.

  10. this blessed me so much, Amey, and oh, how the tears flowed. thank you for sharing this. we recently returned from respite care at a children’s hospice in our province, and there is so much grief, and yet joy there. I understand those animal wails and hiccups, those childlike bawls…I so get that. My girl is still alive, and yet the grief of the diagnosis weighs so heavy. Thanks again for sharing.
    xo

  11. We should thank you for sharing your family with us…people you don’t know, but have allowed us into your hearts and home, to get to know your precious family, to grieve with you when your sweet Phoebe is called home. It has been an honor to get to know you and your family through you writings. I strive for a closed walk with my God so that I may have the strength and peace you sphalerite shown us…thus could only come from The Lord. I continue to pray for your family. God Bless you! P.S. I hope when you mentioned writing that it could somehow be a book on your life in your service to Him.

    With love from Arkansas Brenda Rhodes-Sent from my iPad

    >

  12. Dear Amey,

    I had the gift of hearing about dear Phoebe through Susan Schoppa, my dear friend from college. I teach at an all-girls’ Catholic school in Phoenix, AZ. Every class hour begins with a prayer, and since hearing of Phoebe’s illness, her path to recovery, and her final journey to Jesus, my students and I have prayed faithfully for Phoebe every day, five times a day in each of my classes. I have shared with them your blog and have followed it faithfully on Facebook. Not a day goes by that we do not pray for you, Nathan, the boys and for Phoebe too–still! She remains in our hearts and in our minds. We will not forget her. Her life and your witness has touched us all and continues to model to us what it means to truly love and have faith. We remember Phoebe and we celebrate the wonderful gift of your daughter.

    Peace and blessings,
    Michelle Enciso

  13. I feel exactly the same way as everyone who wrote previous replies. Like Brenda Rhodes said, “We should thank you for sharing your family with us…” Thank you, also, for including your beautiful photographs. It feels as though I’m receiving precious pictures of my own dear family. The love your family has actually emanates from the photographs. I cannot even imagine the journey you and your family have been, and still are, going through. You write so eloquently, that I sometimes forget that I don’t really know you and your family “in person.” I’ll be speaking of dear, sweet little Phoebe and her loving family and have to make myself remember that I never actually physically “met” any of you. It’s kind of a surprised sort of feeling. I think I know all of you spiritually and that’s very dear to my heart. My little great-granddaughter (Evye) reminds me so much of the way Phoebe looks and the funny, sweet things she says. I am fortunate to have Evye living with me at the present time and Evye looks at Phoebe’s pictures and says, “Phoebe is my best fwend.” My love to you, Amey, and your dear, dear family.

  14. For all of you that are new to our SS class, this family in Texas came to our attention over a year ago when their little girl was diagnosed with brain cancer. We have had her on our prayer list since we first found out about her and after a long difficult fight she passed away a few months ago. Her mother and father continue to send emails occasionally, letting everyone who spent so many hours praying for them how they are doing. These are difficult to read but at the same time they are encouraging to see a family who can share their grief so openly.

    Since everyone handles grief differently, if youwould prefer that I not forward theseto you, feel free to tell me and I will understand.

    ________________________________

  15. I enjoy your thoughts and feelings because they remind me of when my brother died. I understand your children’s feelings but I can not imagine yours. You seem so strong but I know you also have “those” moments when it seems your knees will buckle under you. I’m not going to tell you it will get better, it may, but it may not. There’s not a day go by that I don’t think of my brother, mother and dad that have already passed. I don’t want you to feel depressed as you read this, please feel at peace, knowing that normalcy comes in a billion different ways. You’re going to make your own way through this. God can help like nothing else can. May God bless you as your walk continues.

  16. When you write your book about sweet Phoebe’s life on earth, I want to be the first in line. You write beautifully. You say things I only feel in my spirit. Words are hard sometimes to even think of. You need to share your wonderful gift. I love reading our blog, it always touches me. I’m so glad I got to “meet” Phoebe through your words & through you sweet mom. She brought me great joy & gave me strength. I hope you all have a wonderful Christmas & celebrate how blessed you were in being chosen to be Phoebe’s mom, dad & brothers. Love & hugs, Elaine

  17. You are a gifted writer, Amey. I hope you pursue writing projects. I know your family only through your writing and pictures, and my eyes continue to fill with tears every time you mention your dear Phoebe. Thanks for sharing your heart. May God continue to comfort you in your loss.

  18. 12 years ago today, we buried my baby brother. Days shy of 11½yrs later, we buried my 21yo sister after complications from routine surgery. My heart aches with and for the Fair family. Reading about sweet Pheobe reminds me so much of my siblings that have gone to be with our Father in Heaven. Reading about your sons reminds me of what my other siblings and I went and continue to go through.
    Amey, as a fellow homeschooling mommy, I admire you greatly. Your perseverance through the valleys of life is amazing. Not only has Pheobe inspired and encouraged us, you have as well. I can only pray that I exemplify a love for our Lord well as well as you, your beautiful Pheobe, and all 4 of your men.
    May God’s eternal grace be with you as we enter this most Holy Holiday Season.
    Much love and many prayers for the Fair 6.
    XOXOXO

  19. There won’t be a day that passes by (EVER) that someone does not talk about Phoebe. She has touched so many lives! Your family is loved. Hugs to all of you!

  20. Thank you for letting us all hear from you. Sounds like time marches on as it is suppose to do even when you marvel how the sun can still shine without Phoebe here.
    Nathan is a man, and as such, he feels the need to drown himself in helping others. How wonderful for him, but he too must take the time to grieve. Don’t let it slip up on him. I know he feels he needs to be strong for the family, but keep him grounded, Amey. Take nothing for granted and stay strong together in the Lord.
    I have Phoebe here at my computer and in my heart; with her sweet family ever in my prayers for boundless mercies from our Lord.
    LaNell

  21. Oh, Amey, I’m so glad to know you’re so grounded in the knowledge that ‘Phoebe is still alive, just not here’. She lives on in so many others’ lives who’ve followed your writings and marvel at the words God has given you to express what many of us feel but are not gifted with the ability to express!

    Please know that brain researchers know that crying is actually the brain’s way of sorting out ‘stuff’ that’s all balled up and putting it into accessible ‘files’. This makes the various bits available for useful decision-making in the future rather than leaving a frozen, balled up knot in memory that one won’t go near for fear of what feelings will come up. Crying is truly our body’s healthy way of coping, and I suspect you’ve had some surprising revelations as well as the sweet memories of Phoebe which have come – thank you, Lord. I hope this information will comfort Benjamin, and all the rest of the Fair family as needed.

    God Bless you, Amey, Nathan, Benjamin, Averic and Deacon. ~and may this Christmas be even more special knowing you have a closer connection with Jesus through Phoebe.

  22. Hi Amey and Nathan,
    I missed reading your blogs. I am in tears so much tears. I miss Phoebe, the routine we followed with you awhile she was here. How much I miss the daily and weekly blogs.
    We miss Phoebe.

  23. The other day, while driving in the car, the song “held” by Natalie Grant came on. I thought about your family, trying to imagine what you must wouldbe going through. Our prayers continue for your healing.
    I agree with you: with what we know about heaven and how wonderful to be close to our savior, not only would Phoebe not want to leave, but nobody would want to take her away from that!

  24. Continued prayers for comfort and peace for all of you during this holy season. We will never stop talking about Phoebe! As you continue to share with us, we share stories in beautiful oral tradition, friend to friend, within families, with strangers. Phoebe’s light is even brighter and stronger as she stands next to Jesus. Love to y’all.

  25. HI AMEY, SORRY I’VE NOT RESPONDED – NO COMPUTER ACCESS FOR A BRIEF TIME.

    THINKING OF YOU AND YOUR FAMILY AND PHOEBE IS IN MY THOUGHTS AND PRAYERS
    TOO.
    THANK YOU FOR SHARING AND WILL RESPOND IN MOE DETAIL SOON.

    WITH LOVE
    SUZANNE SMYCZYNSKI

  26. Hello Amey & Fam.

    Thank you for continuing to share your journey with us. Thank you also for continuing to share her pictures with us. It’s really nice to still see her from time to time. She continues to help me keep insignificance, as you said, in its place.

    You and your family have a special place in my heart and your names are always whispered in my prayers, now. Sending love and healing prayer from Gainesville, Fl.

    ~Lisa

  27. Always love to hear about you and your family
    Always love to hear memories of Phoebe
    Always love and pray for you and your family
    ALWAYS WILL love Phoebe and all of you and how God shines through all of you,

    God has, is, and will use you and your family in a MIGHTY way–HIS WAY, HIS TIMING!

    Loving u
    Marilyn TN

  28. I just found your blog today. My friend’s daughter was diagnosed with AT/RT the Monday before Thanksgiving. She turned 2 on December 14th and started chemo Dec. 16th. Happy birthday to Alix! I saw a picture of your baby girl and oh what a beautiful little girl!! I am so very, deeply sorry for your loss. I am touched, so deeply touched by your faith and if I were honest, I am drawn to it, because I cannot seem to find mine, for the first time in my life it seems to have left me. Those deep wracking sobs you spoke of are cleansing, they are healing just as you said, but I cannot bring myself to let go. My friend has 2 older children and is such a wonderful mother. She is a single mother and I can’t get there to the hospital as often as I would like. I would be there all the time if I was able. Thank-you so much for sharing something so personal and heartbreaking with the rest of us. Thank-you for your faith. I will continue reading.

  29. Amey, thank you for continuing to share your family with us! I feel as though we got to know not only Pheobe through your writings but also you, Nathan & the boys. Your family still continues to be apart of my thoughts and prayers. I know how easy it can be to shut down and run away but that wouldn’t give glory where it is due in the long run, so know that your strength and even breakdowns are all part of gods glory and he will have victory in the end.
    Love to the Fair family & hope you have a Merry Christmas!

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