I still haven’t found that chap-stick. The one that Phoebe ran off with just a few weeks before her passing. Knowing Phoebe, she probably tucked it inside a little coin purse she had, or in with her nail-polish stash. All of those things still sit on the shelves in her closet. I visit them from time to time, holding her little shoes and thumbing the wear-patterns on the soles of them or looking through her pink backpack that held all of her everyday treasures: My Little Pony Band-Aids, a flip-open mirror, the last few Beads of Courage she earned at the clinic.

A couple of days after the 2 year anniversary of her death, I painted her room. The other bereaved parents said I would know when I was ready, and they were right. I had dreaded it; just the thought of it made my stomach churn for 2 years. And then one day, I needed to do it. It became urgent almost, and I made plans to move two of the boys into her room. We listed her bedroom set on Craigslist and discussed what our response would be if someone were to ask why we were getting rid of it. “Our daughter doesn’t need it anymore.” was decided on, and it was true. A few days later when the buyers came to load it on to their trailer, I watched from the kitchen window but didn’t cry. “Just props.” I said under my breath, recalling a sermon I heard years ago about God’s intention for our material possessions. Just props that enable us to serve Him better. The thought that Phoebe had “outgrown” her furniture comforted me somehow.

She goes on, but moth and rust will eventually destroy her props. They will not last. She is the treasure stored in heaven, the furniture can go. It is not her.

These were the thoughts that enabled me to let go. Eternal perspective is fundamental in these moments. It informs every thought I have about my history with Phoebe, and my future with her. I can not imagine the extent of my undoing without a biblical framework for this pain, without an understanding of the nature and character of God.

Shortly after that trailer drove away, I set to work painting. Making space for the boys to spread out a bit, giving Thatcher a room without pink curtains and yellow walls. The brush strokes do not erase her, they simply create room for life as it is here, now. She is safe, and whole, and held, and she goes on…and that is my hope for my life.

It’s been more than a year since I have typed a word on this blog. I always assumed that writing through the aftermath of Phoebe’s and our family’s tragedy would be cathartic, but it has not proven so. What I didn’t anticipate was the all-encompassing fog that grief wraps around the mind. Cohesive thought becomes a luxury, and the ability to remember dates, appointments, or conversations might as well be a super-power.

Articulating the roller-coaster ride without flying off the rails into raw, unbridled emotion has also been difficult to master. It has been more simple and less dangerous to just be quiet. Trying to assign words to my pain requires that I give focused attention to it, which is difficult when so much of one’s energy is spent trying to avoid that very thing. So, I come back today, hoping that you’ll forgive my silence as it pertains to grief. I don’t yet know what I want to say about it, but I imagine that what I need to say will soon make it’s way to front of my heart and spill out here.

I don’t want to wait until all these messy feelings are neatly packaged and wrapped up in a tidy little bow to then present them as some type of accomplishment. I don’t even think that’s possible this side of heaven. My goal is to be authentic without being disturbing! Ha! I have been so encouraged by friends these past few months that I need to write again, so I place full blame on them if the writing here is found to be something more akin to the rantings of a mad-woman than the musings of my former self.

We are two years and 3 months past the loss of our Phoebe. Thatcher is now 15 months old and walking and screeching and cutting four molars all at once. I had forgotten about molars and the total upheaval of life they present for the parent of the unlucky toddler. His usual disposition is sunny and bright and extremely affectionate, just like his big sister. It’s in those moments of being hugged so hard by him, that I feel him living up to his name “Yahweh has comforted.” He is such a gift.

Benjamin is now 13 and in 8th grade. He loves to read, play soccer, hang out with friends, play board games with his dad and brothers and bake with me. He is so helpful to me. Averic is 11 and in 5th grade, he also loves to read, play football, and is a Star Wars fanatic. He is the out-doorsy, animal lover of the bunch and wears his heart on his sleeve. Deacon is 8 and in 2nd grade this year; he loves math, exploring, playing in his tree-house and board-games. His heart still hurts as the fullness of his understanding of our loss comes to him. He was only 3 when Phoebe was diagnosed and it was all very confusing for him.

Nathan continues with the Agriculture and Appropriate Technologies ministry through YWAM Tyler. The last year has been focused primarily on building training systems at the YWAM Twin Oaks ranch, appropriate for training missionaries and for replication in third world settings. I will post pictures soon that will give a better overview of their work.

I am gearing up to speak at the first Ziglar Women conference since 2012, and since losing Phoebe. It will be held in Odessa, Texas at the end of February. I am still home schooling the boys and taking opportunities to speak at local MOPS or Moms 2 Moms groups when I can. On Monday night I attended my first-ever writers group. I left feeling so welcomed and encouraged and I look forward to continuing. The first few chapters of my long-neglected book have remained untouched for over a year as I have navigated some treacherous waters. Sometimes feelings are TOO raw and unchecked, and they don’t help anyone except the author in some type of purging mode. But this is not the stuff for books, it is the stuff for diaries with little key holes on them.

Mostly, I need to practice giving shape to my thoughts again through written words. Kate DiCamillo said “Writing is seeing. It is paying attention.” And that’s what I long to do again…I long to see through the fog, to pay attention again, and to write.

For those of you who haven’t met our little man yet…

Thatcher Nehemiah Fair
10-12-14 12:43pm
7.2lbs 20in

Our beautiful family photos that serve as the headers for our facebook pages were taken by my dear friend at Brandi Burkett Photography. She has organized a wonderful event in Phoebe’s honor to raise money for pediatric cancer research. If you are near to us here in East Texas and are wanting some incredible, professional, beautiful family photos, and want your donation to fund research to cure Phoebe’s type of cancer, ATRT, this is your chance! Hope to see you there.

https://www.facebook.com/TheFairFight

Such sweet months leading up to Phoebe’s birth. I have flashes of memory: relaxing in a chair in our backyard in Mexico while the boys splashed in the water sprinkler on the trampoline, hanging diapers on the clothesline in the sunshine, picking the bananas from our tree. I was reading ‘The Yearling’ for the second time in my life and feasting on the rich ‘coming of age story’ of a boy named Jody. I was waiting expectantly for this unknown baby to make his or her appearance.

July 26th was the due date. But the weeks passed and I was patient. Mom flew down to wait with me and finally, on August 16th (!!!) my precious Phoebe Lucille made her entrance. Her timing was not what I expected, but it was God’s and I was His.

On July 26th of last year (2013) I sat in a small room in the Oncology clinic at Childrens Medical Center Dallas. Nathan sat next to me, then Mom and Dad on the other side of him. We had been in this room many times over the past year for port access, lab checks, antibiotic infusions. We had played with the toys and eaten snacks and walked down the hall to the prize closet when Phoebe had done a good job of allowing them to access her port. Any one of those little rooms in the Bright Building Oncology clinic would have been as familiar, a second home to pediatric oncology patients and their families.

But today was different because we didn’t usually come to this room for MRI results. Dr. Bowers usually met us in the MRI waiting room, gave us the good news of a clear scan, and we headed home relieved. It was a long walk from the imaging area to the Bright Building. Not long by distance, but long with fear and knowing. Even with that, my thoughts turned toward more chemo or a new treatment plan of attack.

The social worker came and took Phoebe to the play area in the waiting room. And then they told us it was back. The cancer was back, and it was already half the size of her original baseball size tumor. And that’s not all; it had spread, two new small areas on her spine showed cancer growth. The room stood still. It had only been two months since her last clear scan. I looked blankly out the window at the care passing by on the street below us. Those people, just driving by, going home from work, going about their lives I thought… and here I am in this room, trapped by this news with nowhere to run from it.

We talked about options and they were unsatisfactory, all of them. There was no good option, nothing that would offer hope, nothing to grasp to even hang on by my fingernails. Nothing that wouldn’t hurt Phoebe more or cause her permanent damage. And then we ask “how long?” and he says “two to eight weeks”. And then some discussion of hospice and it’s all a fuzzy, hazy blur and I’m knowing that I have to keep it together when I see Phoebe so I don’t alarm her. I am numb as I hold her chubby little hand as we walk down to the parking garage. She chatters away with her sweet voice, her pink sandals tapping on the pavement as she walks.

Phone calls are made on the ride home and we soldier through them without crying because Phoebe is awake and happy and asking for extra ketchup on her French-fries. And then we come home to the boys.

The boys…

Phoebe goes inside with Grammy and Grandad and we sit on the front porch with the three best big brothers in the world. These boys give meds, push water, know how to cap off an ng tube. They change diapers and help her onto the potty. They stay and cuddle with her until she falls asleep at night. They bring her extra ketchup and have tea parties with beads.

We form words out of our own pain somehow..”cancer is back, growing fast, nothing left to do that won’t hurt her more”..between sobs we somehow come to the point: “two to eight weeks” Nathan says.

Sobbing, and wailing, and boys don’t cry like this. Utter despair and “how can it be?” and “why?” and “Oh my God…” and deep, guttural cries. Such grief for boys too young. We are a family broken in heart. We will be the unfortunate survivors of Phoebe’s cancer.

It is a scene emblazoned on my mind. Tonight I revisit it to share the details, to get it out in words, to put a book-mark on this one year anniversary. I usually spend my days mustering strength to keep these many memories in check so I may continue on. A year later we are better, I think..still broken, yes. But God has given us tools and helped us draw from deep reserves we didn’t know existed in ourselves. Grace for the moment is real. We are coping, functioning, and we find joy in life, though not the unbridled joy of life before loss. Not yet.

We miss her, we ache for her, we are overcome sometimes by longing. We grieve, we look past each other having a bad attitude or a bad day and try to give grace, because a lot of the time, it’s just hurt bubbling to the surface. We are getting through.

And Phoebe, Oh I feel joy for her, such relief…that she is free from “this body of death” as Paul referred to in the Bible. No more pokes and chemo and C-Diff and hospital stays and being on isolation. No more ng tube insertions and late night fevers and 3 am ER visits, no more neuropathy or pain. I would gladly live that life again if it meant having her here with us. But it’s selfish…she’s done with all that and I am so glad for her. She handled it all so beautifully, like the bright-illuminated light that she was. Glowing and graceful and emboldened by a deep connection with Jesus that was beyond my knowing.

She was born “late”, weeks past her due date, but she was right on time. And she left earth too early, too early for this Mother’s heart. No… her timing was not what I expected, but it was God’s and I am His.

I am 6 months into my pregnancy. Baby Fair #5 is due end of Sept./beginning of October. This time last year we were returning from our family beach trip to Florida with Lighthouse, a ministry to pediatric cancer families. Phoebe was feeling great and life without chemo felt amazing. In just a few weeks I would notice that she had quit climbing up on the kitchen chair and seemed to weaker; we would find out on July 26, 2013 that the original tumor had returned and was already half it’s original size with new tumor metastasis in her spine. I can’t believe she’s been gone almost 9 months. We have learned new coping skills through our grief, but there is always pain just beneath the surface. I’m told it can feel raw for years and that the 2nd year is tougher than the first. I try not to dwell on that thought because I can’t fathom it. In the midst of pain, life continues, and beauty is still beauty and we are still able to recognize it. Benjamin and Averic both had birthdays this month turning 12 and 10; their first birthdays without Phoebe. We had a little party out at the lake and they had a blast. Last month also found us in California for the memorial service for Nathan’s grandmother, Marlene. Phoebe has no shortage of great-grandparents with her..I get jealous each time someone we love leaves this earth for Heaven. Our trip home included a stop at the Grand Canyon and a train ride complete with cowboys and outlaws.

Unfortunately some sad news has also made it’s way into our lives; my Dad was diagnosed with lung cancer and begins chemotherapy tomorrow. He tells me Phoebe is his role-model and her Beads of Courage now hang on his IV pole.

Also, my midwife passed away suddenly and unexpectedly from stroke this past week. This was of course shocking and sad. It seems that suffering is so pervasive right now and I don’t know how to process all of it to be quite honest. I have been reading and re-reading Romans 8:18-25 these past two weeks and trying to focus my heart on this passage:

“For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. For the earnest expectation of the creation eagerly waits for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of Him who subjected it in hope; because the creation itself also will be delivered from the bondage of corruption into the glorious liberty of the children of God. For we know that the whole creation groans and labors with birth pangs together until now. Not only that, but we also who have the first fruits of the Spirit, even we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body. For we are saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, we eagerly wait for it with perseverance.”

~Praying for perseverance~ Amey