Phoebe’s Boys

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Tonight, these boys sit around my table. They laugh, chew with their mouths open despite reminders, forget to use their napkins. They are louder than they ought to be and chanting and banging on the table is also not uncommon. I roll my eyes at their antics. I refrain from fussing, inwardly step back, adjust the lens.

The thirteen year old; he will have his father’s nose. In five years he can legally marry, but sometimes still he holds onto me in the kitchen and cries. He dreams of flying airplanes and foreign countries, and maybe he’ll write a book he says. He looks out for me, this one.

The eleven year old, overcoming his Dyslexia and surprising himself with a newfound addiction to a chapter book series as of late. He tells me about the dragon tribes and his eyes are ablaze with the love of a good story. My hearts swells and I exhale, satisfied. He is stubborn like his mother, but his heart is tender and always on his sleeve.

The eight year old smiles tonight and laughs at the one year old who is putting on a show for everyone. I can almost see the healing as the laughter bubbles out. A second chance to love and be loved by a younger sibling. The hurt recedes for a moment and he is just a normal boy without a wound.

Not a meal goes by at this table that I do not think of her. I know she would help me manage this crew of wild ones, contribute her joy, giggle at the sillies, say “eeew, that’s gross.” at all the right moments…

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Oh Phoebes…

Phoebe’s boys are a lot of work, and sometimes a boy-mom just needs a quiet space away from all the action. But tonight, these boys are at my table, and in the days that stretch out but fly by, they will change shape. They will shed the round edges of boyhood, become disenchanted with their Legos and light sabers.  They will leave my table, just as Phoebe has, and these flash-frame moments will be the hidden treasures of my heart.

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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.

16 responses »

  1. While your posts bring back such sad memories, at the same time they warm my heart seeing your four boys adjusting to their new life. Phoebe’s journey changed my life to where I have become a more compassionate and caring person. I know she is watching down on your family and that one day you will all be reunited. Prayers continue!

  2. Dear Amey I can’t beleive how much they have grown. I was thinking of you and Phoebe and your boys today. I put on my team Phoebe tshirt and wore it. I met a lady from the hunger farm yesterday and we talked about you. Y’all are loved by many. Love, Patty Klein

    Sent from my iPhone

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  3. Awe Amey… You have such a beautiful way with words…smiling through tears as I read…again I Thank you for sharing your treasured moments in time. Prayers~ LoVe~ and (((HUGS)))

  4. Amey – Thank you for sharing your heart. Your vulnerability is encouraging and despite the time difference in losing a daughter, these issues for me remain. Thank you for stretching me beyond my comfort zone into dealing, coping, and facing my grief many years past due! Rachel

  5. Amey, as I read your words and tears fill my eyes, I think of the days and nights I prayed for Phoebe and pleaded to God for his healing touch. God’s ways are above and beyond anything we can understand but one thing I do know for sure is you will see her again. I can’t wait to meet her and see her big smile and beautiful face! God Bless!

  6. You take your precious Phoebe with you which is all about love. I know you can’t physically hold her but you can embrace her in your heart. So glad Phoebe can comfort you.

  7. How precious to hear your heart, and to see how you are all growing. You add a loving dimension to my life. Thank you, Amey!

  8. Amey, I can’t read any of your beautiful essays without crying. Thank you for sharing with us, the journey of loss and faith and healing. I can’t wait to meet Phoebe in heaven. A special girl, greatly loved by God and her family.

  9. Our dear sister in the Lord, mahalo (thank you) for keeping us close to your ohana (family) with your wonderful descriptions of your boys. Phoebeliscious will always be remembered as a blessing as you are being a blessing to many thru your writing. Who knows how our awesome God will use the talent He has given you to bring restoration, healing and salvation to the many who know and don’t know you personally. Let it be well with your soul. Imua (forward) in Christ Jesus.

  10. It has been good to see you writing again. I thought I may never see it again. Although it is of this next stage of grief, I do love your use of our language. You have such a gift. I haven’t known what to say yet. I cried so much for you and your family and I hold mine a lot closer now. But I smile when I think of Phoebe’s face and her joy in heaven, and no more chemo. I keep you all in thought and prayer.

    Yours in Christ,
    Lisa

  11. You are such a gifted writer! I think of you often and my heart aches for you because you do not have your Phoebe with you any longer! When my own spirited Phoebe is causing me aggravation I try hard to be always thankful for the moments I have with her. I think of you and realize every moment is precious because at any moment she could be gone! Thank you for sharing your beautiful heart and your beautiful family with us!

  12. I hope and pray you are all doing good. I check in often to see if there is any new posts. Many prayers. I have now lost my 28 year old daughter and unborn grandchild since your last post. So now I understand, and oh how I wish I hadn’t. Prayers.

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