When It Rains….

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Tonight, as I write this, I am at Parkland hospital watching Deacon sleep. When I look out the window I can see Phoebe’s room across the street at Children’s Medical Center.

Some days are too unreal to be real. This was one of those days. Ben (9) woke me up at 6 am complaining that his “chigger bites” (as we suspected yesterday) were really bothering him and that his head hurt. I took his temp, gave him some Tylenol, applied Chigger-X and went back to sleep. Half way through our school morning I found him on the couch crying and complaining that he was feeling worse. Since Ben has an underlying blood disorder called Auto-immune Hemolytic Anemia, I didn’t waste any time taking him to the ER. He’d had a break out like this when he was four that ended up being a systemic staph infection that had to be treated with antibiotics and I knew that if his hemoglobin level was too low he would need a blood transfusion.

Just after getting checked in to the ER at Children’s (where Phoebe was just a few floors above) I got a phone call from Jocelyn, our friend who is helping us out right now. She had been doing math with Averic and heating up some water for mac n cheese when the microwave beeped. We have had to pre-heat our water in the microwave lately since our stove isn’t working, and when it beeped Deacon said “Jocelyn, the water is ready.” To which Jocelyn replied ” Okay Deacon, don’t touch it, I’ll be there in a second.” But Deacon, wanting to be helpful, scooted his little stool up to the microwave and grabbed the glass bowl of boiling water and pulled it out, spilling it all down his cheek, neck, chest and arms. She called me, then called an ambulance and as I was being taken to an ER room with Ben, Deacon was being taken to the ER at Parkland Hospital, right next door to Children’s where we were. It felt like a bad dream. Too unreal to be real.

We made a switch around of people and family members,  and I met Nathan and my Mom in the ER at Parkland right next door after my neighbor Tessa took me over. This is what I saw when I walked in….

He had Morphine and was being sweet, I held back my tears so I wouldn’t scare him. Later he was taken to the scrub tank and Nathan went with him. They said it would be rough, that the first time is the worst, that they would make him as comfortable as possible. I knew I wouldn’t be able to make it through without crying. I am spent with hurting for my children..

Nathan lovingly spared me details, and when I saw Deacon next an hour later, this is what I saw…

He will go to the scrub tank tomorrow and maybe the next day as they see how his burns are doing. Then we will be given wound care instruction and sent home. He will have clinic visits for a while until he is completely healed.

Meanwhile, Phoebelicious was getting fitted for her new boots…

These  little casts will help her foot drop and stretch out those muscles so she can learn how to walk again! Yay for walking!

And here is the Phoebster doing her Occupational therapy in her super-she-ro outfit. She had a great day. Phoebe being the child I was least worried about today was a new experience!

I wish I had a picture of Benjamin to share, but I left him in such urgency to get to the ER for Deacon, I felt so bad leaving him. He does not appear to have Staph, but does have a bacterial infection on his skin and is being treated with antibiotics. If it doesn’t improve in 48 hours he will go back. His blood labs were drawn and his hemoglobin looks great, so I am thankful for that. I told Nathan we need to put Averic in a padded room just in case….I can’t believe 3 out of 4 of our children were in the hospital today. What a day.

Thank you to all of you who have been praying for us. Apparently we need it A LOT.

~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.

62 responses »

  1. I know you don’t know me, but I pray for your little angels every night, that they are surrounded by the angels and jesus’s loving embrace. I cannot imagine the horror of having one child critically ill must less all of them. I am sending you my love, my prayers and support….my sister lives in Texas and I will have her and all her friends pray for you all of you as well. Peace and love…a concerned mom from California

  2. Oh, Amey…I just can’t imagine going through all that you and your family are having to endure right now…I think even Job might wince at the challenges you had today! Please know that you all continue to have our prayers from here in Managua.

  3. Oh my goodness, wow – i’m at a loss for words. Am glad that everyone is ok and will pray that the boys heal quickly with no further complications. How quickly life takes another turn. How wonderful that this didn’t happen over the weekend and that you were all there together to deal. Sweet Phoebe looks as precious as ever and it looks as though she keeps fighting and rolling with the procedures. Praying she learns how to walk again so she can feel right at home when she returns. Will pray for you all and continue fighting. May you all rest in peace and have a very uneventful rest of the week.

  4. Oh, little punkin’. :(. That looks so painful. He will heal though. That is the good news. And Ben will be ok. That’s a relief as well. And I love Miss Phoebe’s new boots. :). I long for the day when the Fair household is back their silly, healthy, goofy, carefree selves. Until then, prayers and love and hugs all the way around.

  5. This is absoultely unbelievable! Poor poor babies! OUCH! You are so strong and my heart hurts for you. Too much tears for one day I am sure. Praying for you! LOVE your family!

  6. Oh my sweet dear Amey! I am just aching for you!! Your mother’s heart is being pushed. I am so very thankful you have a strong relationship with Jesus. Keep your focus on Him. I am praying and praying for you all.

    <

  7. Oh Amey….I can’t even begin to imagine how overwhelmed you must have felt. Your poor kids!!! Poor you!!!!

    I am praying that our Heavenly Father will shower you with His strength and His patience and His grace, to cover you as you cope with these new setbacks. I am praying for healing for the kids and for each of them to be strengthened as well as they deal with pain and discomfort and fear. Mostly, I am asking the Lord to “give you a break”…to do something that will allow you to stop the clock and just breathe.

    Amey, I admire you immensely for how you rely on God to see you through the challenging times. You’ve had a lot thrown at you and it would be easy to crumble, but you are still standing firm with His help and that’s a cool thing for the rest of us to aspire to. Hang in there Sister…and I will continue to pray!

    Hugs,
    Pamela in Calgary, AB

  8. Amey and Nathan, your unimaginable trials have led many to the Word searching for understanding and to their knees tonight beseeching our Lord to protect your entire family from further attacks and to provide comfort and peace. God, please help my faith and forgive me for needing any motivation to come to You. Lord, please heal these innocent children and keep them in your loving care. Father, please smooth the path for Amey and Nathan and restore them. In Jesus name, Amen.

  9. I don’t know if you are familiar with Neil Simon’s play, God’s Favorite, but it’s a contemporary telling of the story of Job, in a comedic tone. There is a monologue by the leading character, Joe Benjamin, where he recounts all the horrible maladies that gave affected him and his family, but he rails and screams heavenward, ‘… but I will not denounce you’. Not a one of us would blame you a bit if you did a bit of railing, Amey. I am so humbled by your steadfast faith. Blessed Be. Mwah!

  10. This is so unreal! Had to read it twice last night before the words sank to my brain and then to the heart! We are praying and keeping the fire wall up! Poor Deacon and poor Ben! The burns are bad -but I imagined it worse. I worked on a burn unit and think they should heal o.k. But it is mega painful and will take some time. The super, super important thing for Deacon is to get no infection in his wounds and that his body can manage the fluid household. We are praying and sad! Fair family -we hope that our prayers can comfort your souls a bit and especially for you Amey we pray peace and strength! Hugs
    Chris

  11. We will be praying for u and your family. I always read your post through shares on fb by jesci boatright. U cease to amaze me. God is the only way u could be making it through these triumphs. I am a Rn and if there is ever any way I could help u or your family please let me know. Godbless

  12. Praying hard for ALL of you for health, strength and a sense of “normal” as life was pre-2012, I hope everyone gets rest and that today proves to be an easier day. GOD bless each and every one of you!

  13. Bless your hearts! You, Amey and Nathan, are doing something great for the Lord in the witness of your lives, otherwise, the devil would not give you such a hard time! We will continue to bombard heaven on your behalf….not just us, of course, but all the prayer warriors all over the world that the Lord is calling out on your behalf! Our love and prayers for you and your family!

  14. My heart is pounded with tears for you and your family. You guys are my heroes, you are awesome and I know our Father is looking after you even when sometimes it doesn’t seem like. Remember that the night is the darkest just before the dawn. You are loved and your kids and you are being covered in prayers from Guatemala. We admire everything you have done, and I want to hear of the miracles that happened in your kid’s life as well as yours. We love you. Be encouraged and may the peace of the Lord will be with you. May the Lord fill you with joy and His hand of healing be upon your kids and peace of mind for you Amey and Nathan.

  15. Oh my goodness, you guys. Shedding tears and praying prayers on your behalf today… sending our love to Deacon, and to all of you.

  16. I cried for you all as I looked at the pictures of Deacon. I have had family members get burned and it is so hard to watch them go through the treatments. My thoughts and prayers your way.

  17. Sweet Fair Family…I am overwhelmed with what you went through today. I can only think that it seems like a spiritual attack for sure. I am praying earnestly for you guys and for Deacon, Ben and Phoebe. It’s actually amazing to me that Averic is the one not hurt! I love you so much. If there is anything I can do to help you during this time let me know. I will be there in a second…well, really two hours. Matt and Josiah are praying for you in Nepal as well.

  18. Oh MY AMEY!!!! Praying for your whole family! I pray for your grip on God as you go through this time with your children… He has NOT left you! You are an amazing STRONG woman and I KNOW you will get through this– Remembering JOB at this time- Cling to him and you will persevere!!!Love to you all!

  19. Oh, Amey! How I hurt when I looked at those pictures of Deacon! I shared your post with my children, and we looked at the pictures together. My sweet four year old girl dropped to her knees saying, “We have to PRAY!” and prayed the sweetest prayer for each child. Then she said, “And please help their mommy not to be too sad, and not to have tears in her eyes.” We all hurt for your family this morning, and are praying fervently for healing – for all of you.

  20. Praise the Lord! In good times and in these times Praise the Lord! His ways are higher than our ways. Let everything that has breath Praise the Lord. Praise the LORD!
    I am Praying Psalm 150 over you.
    Praying for your family,
    Mary M

  21. Amey, we have never met, but I am one of the countless people who is praying for your family. My cousin Cally Finney posted all your links, and now I come on here regularly to see how a family I’ve never met is doing so I can pray better. I’m a mom of 4 kids too, and I’m sure I would be spent on seeing my children hurt if I were in your shoes. I’m so sorry all this is happening to you and your family. I pray for protection over your household and that God will bring beauty and joy from your trials and tears.

  22. Oh my goodness! When it rains it really does pour! Lord Jesus, lift up this little family to you and touch each and every hurting part of it. Thank you for them, and for their trust and love for you. Give them strength, and rest and peace. In your precious name we pray, amen.

  23. Oh Amy girl I am in tears for your sweet children. I love their little hearts! I will pray. Hang on to Him lovely. May your children be quickly Healed in Jesus name

  24. Brother Bob said, “Averic is the only one who’s NOT having trouble? I can understand why she wants to put him in a padded room.” We love you a ton and are praying for all of you. Sweet Ben, we think you are so special and strong. Averic, BE VERY CAREFUL for awhile, ok? Deacon Baby, we are so sorry you got hurt. Phoebe Girl, pray for your brothers. Nathan and Amey, one foot in front of the other. Heaven awaits, but until then, grace abounds.

  25. Your comment was “filed under: uncategorized”…I think I would re-file it under “OHMIGOSH!” 🙂
    I have been praying for your entire family, and now will up those prayers a notch. God still has it ALL under control, but I imagine that it sometimes doesn’t feel like that at all. However, the truth is that he DOES have it ALL under control. And ain’t that grand!!
    Praying for quick healing for burns and skin infections…and an easy chemo…will pray whenever I see my Phoebe bracelet.
    Love,
    Suzy (Amey, hope to meet you at the Ziglar Women conference…if you’re not there, we’ll totally understand.)

  26. Oh girl… I was in the library checking your post and when Deacon’s picture came up I actually cried out loud and the librarian came over to see what was going on. Yikes!!! No words to even say to all this. Insanity. Praying for all your little ones to get healthy and whole again soon. Praying for you and Nathan to hang in there and live one moment at a time in His strength. You need to start wearing a Superwoman cape… never seen anyone who deserved it more. Wowza. Love you and sending a HUGE hug your way today!!!! 😀

  27. Dear Amey and Nathan,
    I am almost speechless and reading the illnesses and hurts of your boys– and that of top of little Phoebe. I am praying for God’s mercy and healing to you ALL, for the pain it causes to see your child hurting is a pain that needs God’s touch just like the burn. I ask the God who “calls things that are not as though they were” to turn things around in a miraculous way for each sick and injured child.
    luv,
    Kay

  28. Amey,
    I am of friend of Angie Burkhalter. My son was diagnosed with a rhabdoid tumor 17 years ago.There were only 3 known survivors at the time. Praise the Lord, he will graduate from high school in 1 week.I will pray for your family as so many prayed for us.HE IS FAITHFUL!

    Lena Sollie

  29. Amey and Nathan, Praying for your both and your children at this moment. Seeing a picture of the game, “Operation” and the Lord directing a hand using that little tweezers to extract the tumor from your daughter’s brain…it’s easy for Him, like child’s play…..and asking God to cure your son’s auto immune disease and that Jesus would pour out His soothing and comforting balm over your son’s burns. May God and His heavenly angels surround you, hover over and under you and walk with you through these trials. In His love, Maureen, LaGrange, IL

  30. Amey, my wife Melinda shared this latest post with me and I found this in my email this morning. May it be encouragement to you. It is from Paul David Tripp, a pastor in Philley.

    The Wrong Address
    Do you ever think that perhaps you’re at the wrong address? Did you ever wonder or wish that the things you deal with everyday weren’t meant for you? Did you ever look at the blessing of someone else and wish that it had landed at your address?

    Do you ever feel lost in the middle of your own story? Do you ever feel as though you don’t have what it takes to deal with what is on your plate? Have you ever felt ill-prepared and ill-equipped to carry the responsibilities that are your daily duty? Does life at times seem too hard? Have you ever wished that you had more control over your own story or a greater ability to deal with all the things that are in your life, but which you did not plan or choose?

    Listen to what Paul (in Acts 17:24-27) says about how each of us landed at the place where we now live, relate, and work.

    “The God who made the world and everything in it is the Lord of heaven and earth and does not live in temples built by hands. And he is not served by human hands, as if he needed anything, because he himself gives all men life and breathe and everything else. From one man he made every nation of men that they should inhabit the whole earth; and he determined the exact times set for them and the exact places where they should live. God did this so that men would seek him and perhaps reach out for him and find him, though he is not far from each one of us.”

    Consider what the Apostle Paul is saying about your life and mine:

    1. When and where you live is never a mistake. Although many of the things that have shaped your story are out of your control, they are under the careful administration of the God who not only created the world, but is the ultimate definition of everything that is wise, good, loving, and true.

    2. Your life has not worked according to your plan because it is part of a bigger plan. There is One who is Lord of heaven and earth. He has written your personal story into his grand redemptive story. He welcomes you out of your own little kingdom of self to be part of his wonderful, big-sky kingdom.

    3. God has you just where he wants you. Sometimes it is hard to face, but God really does determine exactly where you live, who you live with, the exact period of time in which you live, and the exact length of your life.

    4. God has a wonderful purpose for bringing into your life the things that you now face. Rather than working to deliver to us our personal definition of happiness, satisfaction and contentment, God is working so that so that we would know him in a heart and life transforming way. So he will put us in places that take us beyond the boundaries of our own character, strength, and wisdom. He does this so that in humility and weakness we will reach for the help that only he can give us. He is working to pry open our fingers so that we will let go of the things that we tend to hold to so tightly, not because he wants us to have less, but because he wants us to have so much more. His rule is never separate from his love and grace. It is comforting to know that his rule is an expression of his grace and his grace would not be reliable without his rule.

    5. God does all of this so that he will always be near. Paul’s view of God’s rule is tender and encouraging. He does not picture God as the ultimate, impersonal chess player, moving the pieces according to his whim. No, Paul pictures a God who understands our weaknesses, who sympathizes with our struggles, and who rules his world in a manner that makes him near and available. And he welcomes us to reach out and find him.

    So, even in moments of confusion, you and I can rest; not because we know exactly why God is doing what he is doing, but because we trust him. Real rest of heart is not the result of understanding everything in my life. That will never happen. Real rest is the result of a relationship, just the kind of relationship that God sent his Son to make possible and now invites you to have with him.

    God bless.

    Paul David Tripp

  31. i used to attend redeemer in waco and still receive emails from the church. i now live in california. i am praying for you from here. i am deeply encouraged by the way you and your family are clinging to the cross. i hate to see your family in pain and praise God for your faith.

  32. We aro so sorry to hear all that, Amey will be praying for God’s Almighty protection over you all. Blessings & Peace to you!

  33. I just felt like crying when I read your post and saw the pictures of Deacon. We are praying Vigilantly for all the children.

  34. After I read this I cry You are a very strong woman, and I pray you beautiful children get better. And for you to keep been so strong for them and your family. My god be with you and your family always my prayers are always with you and your family

  35. Amey,

    I can’t believe all of this. No one deserves to have 1 child in the hospital, but 3. I guess He knows you can handle it. Please keep us posted on the status of all of them. Prayers and LOTS of them are going your way.

  36. So now it’s time to cover the boys in prayer. I’ve prayed for an uneventful week for Phoebe but it looks like we need to expand that prayer covering. Hang in there Mama and Daddy.

  37. I cannot even begin to wrap my head around what you all are going through. I’m so sorry. But even now, God is still in control. He is bigger than all this. Praying you and Nathan will be filled with His peace; that He will give you the strength – both emotionally and physically – to walk this road; and of course for healing for your precious crew.

    (also saying a prayer for Jocelyn – I know I would be a mess if I were her. I pray she’ll be blessed the way I know she’s been a blessing to your family.)

  38. First I must say the card that I received in the mail was precious and brought me to tears. Just know that I am continuing to pray for each and everyone one of you.

    ❤ Tricia

  39. May the Lord bless you and keep you, make his face shine upon you and be gracious unto you. May the Lord lift his countenance upon you and grant you peace.

  40. Oh my gosh…God certainly knows how to test you, doesn’t He? I can’t even begin to imagine how stressful your day must have been. I pray each of your children heal completely without too much pain and that you continue to feel His presence blessing you with peace, comfort, strength, and love. God Bless.

    Janet
    COLE’S Prayer Team

  41. Amey, I don’t post comments often, but I do read all posts and pray for you all everyday. I just can’t imagine how utterly exhausted you must be tonight, emotionly and physically. I’m praying for you all. I’m hurting for you and wish I could do more. May God be with you and heal you and bless your family abundantly. With love from Missouri, Chelsea

  42. Lifting your family up to the Lord again tonight, Amey. May God grant you and Nathan the rest you need as you struggle through these latest challenges with your children’s health, and may you be filled with the peace that passes understanding. Our hearts go out to you.

  43. I don’t even know how to pray in a situation like this. I guess I’m just praying that you will all keep throwing yourself at Jesus’ feet and hang on with all your might. Praying also for Deacon’s pain to be as minimal as possible.

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