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.
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.
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
My sweet Phoebe got her headstone today. On Saturday it will have been six months since I last held her in my arms.
I don’t even have the words to communicate what it feels like to see your little girls name and dates on a grave stone.
These profound and deepening levels of grief never cease to amaze me as God’s grace to bear it never ends.
Although it is a beautiful memorial to her short life on earth. I am so grateful for the assurence that Phoebe is not under that stone, but living life to the fullest.
The first week of last October we said goodbye to our Phoebe Lucille. I can still see her sweet, chubby little feet in those pink, sparkly sandals. The first week of this October, we will welcome baby Fair #5 into our family. Will it be a girl? I don’t know, I just used some of Phoebe’s baby doll shoes for the photo :) This might be the only authentic “We’re expecting!” message you read today on April Fools…but I assure you, it’s no joke. Looking forward to what’s ahead for our family.
If you want a real treat, go here http://www.youtube.com/watch?v=BbuHSBcnAyQ to see my girl in all her silly glory.
This video was taken the day after we discovered she was terminal and really shows how much of a presence she was in our home and in our lives. We miss her so much.