She was due on July 26th, 2009. The day came and went and I tried to be patient as all very pregnant, very tired, expecting mothers do. It was important that I wait this time especially since I was trusting God for a VBAC (Vaginal Birth After Cesarean) birth. My first two boys were born in the hospital with epidurals, and Deacon was unfortunately cut from my body and almost suffocated with fluid in his lungs because of liability practices. Yes, I’m still bitter.

But this baby, this baby would be born in Mexico under the loving care of our Mexican doctor and our beloved doula. Mexico, where people don’t sue someone over spilt coffee and where I would be free to labor as long as I needed without an imaginary 24 hour cut-off rule with my water broken. If you have ever had a baby, maybe you speak this language.

And so it came and went, July 26th, 2009. And the next day passed, and the next, and the following week…and had I been in the states I would have been made to have a repeat C-section, but thank God, this was Mexico and as long as the baby was fine, I could stay pregnant. And then she was ready. At 4 am on August 15th my water broke. I woke no one, simply got out of bed and went to take a shower. I was alone with my secret while all my loves slumbered into the small morning light. I lay back down and the contractions came slowly and radiated joy throughout my heart. The baby would come soon, but I would not rush for help or seek to be hospitalized this time. I was made for this, and I believed it for the first time. There was no fear.

I woke Nathan and we called Dr. Jose’ Luis to let him know the progress. I woke Mom, in from Texas awaiting the new arrival. We slipped away in the night and made the drive to Guadalajara. The day was just beginning and the city was alive with cars and noise and people rushing off to work. We talked about baby names and reveled in the excitement. We dropped our bags at the birth center and then spent the day walking around the city, went to Starbucks, followed Mom through a tack store and looked at Mexican saddles, picked up a few things at the grocery store, ate lunch. When a contraction came I would hold on to Nathan and wait it out, then walk again.

Around 6pm we made our way back to the birth center. Our 4 am wake up that day was catching up and I needed to relax. We slept for 3 hours. The three of us, well, four of us, on the “matrimonio” size bed. At 9pm I woke up, the contractions allowing me no sleep. I had work to do. Sweet Joni, our doula, came to the center and we prepared the tub and the room where Phoebe would finally make her entrance into the world. I remember peace. And candles, and a soft blanket of darkness and aromatherapy, and the water. There was nowhere else I wanted to be. And then we worked together, me and Phoebe, God and Nathan and Jose’ Luis and Joni and my Mom. Mostly everyone stayed in the background, quiet, encouraging when needed, but simply standing by.

Beauty and agony ensued in that careful place between womb and world. I teetered on the edge of great victory and insanity. Nathan prayed like the voice of one crying in the wilderness but I could not decipher his words between my groanings. Pain and triumph and mystery, anything worth it begins this way. And 26 hours after that 4 am water break, my Bright Illuminated Light was born from water into water and into her Daddy’s arms. He baptized her with tears and pulled her to his chest. A girl! The impossible! We had a daughter. It was August 16th, 2009.

Thank you God for this daughter.

She was due on July 26th, 2009.

On July 26th, 2013 we were told the cancer was back.

This waiting for Phoebe is a familiar place. We have been here before. The room is quiet, “no light!” she says. Be still. And I find that primal instinct in myself to close out the world as it goes on, with its busy-ness and rushing to and fro in all its self-importance. We’ve got work to do here. We have a transition to make. God-willing, an eleventh hour healing. But if He chooses to heal her home to Him, we trust.

We encamp around her now, sleep near, keep a watchful eye. She sleeps mostly, can no longer walk, hallucinates, barely eats. And then she’ll sit up and hug her brother or tell us she loves us. Last night she giggled at “the girl in the living room roaring like a lion”. The veil is thin.

All our gratitude for your prayers and kind words and thoughts toward our family,

~Phoebe’s Mommy

Phoebe’s dog, Sadie, doesn’t stray too far from her theses days. We adopted Sadie when Phoebe was 3 months old and they have always had a special bond.

Without getting into the details, Phoebe is sleeping 95% of the time now and struggling in many areas. She needs your faithful prayers of healing and peace, now more than ever.

-nathan

We are keeping vigil around our sweet girl as she declines. I will never be ready to say goodbye and even with all the waiting it will take me by surprise. A world without Phoebe Fair, how can it be…

-Amey

Updating is sometimes hard when we are in the thick of things. I know many of you have followed Phoebe from the beginning and are very invested in her life as well as those who are just now joining the fight. I will do my best to update during hard times.

Phoebe is having a bit of a rough time. The pressure and pain in her “noggin,” as she calls it, has been growing in intensity. She has been sleeping quite a bit, listless and doesn’t feel well enough to even sit up. To top it all off, she has high fever, which I’m sure is making her feel worse.

It has been hard to discern between what is disease progression and what are the things that we can do something about. On a positive note, her nerve pain is getting a little better and she isn’t complaining about it as much.

-nathan

Phoebe has been struggling quite a bit with neuropathy (nerve pain) in her feet and legs. It makes her pretty miserable at night. She has also had high fever over the past 48 hours which makes her feel crummy. Through it all she hasn’t lost her determination and will. She never ceases to amaze us.

-Nathan

We have been enjoying the past few days and getting settled in back at home. It’s hard to believe we are where we are considering how certain it seemed that Phoebe was leaving us last week. It’s incredible the way she turned around and we are savoring this time.

Unfortunately, our little fuzzy-headed girl is bald again. She had an atypical (go figure) response to a Phase III trial drug that we administered for a week that has shown promise in slowing down tumor growth. It was supposed to be pretty benign regarding side-effects, but Phoebe’s counts plummeted and she contracted the stomach virus and then lost her hair. And she could care less. As a matter of fact, she had fun pulling it out and Nathan videoed the whole 10 minute long event. That girl. She’s unstoppable. Hair shmare.

It was an emotional week, but bringing her home again has been such a blessing. She is weepy at times and is having some pretty difficult neuropathy pain, but on the whole she is doing very well. We have decorated the house for fall, and started back up with school, and we have been enjoying the cool mornings on the front porch drinking coffee and enjoying each other. The small things are everything. Just waking up in a body that is healthy and can move, doing school, cleaning the house, lighting a pumpkin scented candle, having a cup of hot tea, watching the boys play tackle football in the yard, having all four kids under the roof, watching a rain storm roll in…this is this stuff of life, the goodness of the Lord in the land of the living.

-Amey

No time to write tonight, but just wanted to let everyone know SHE’S HOME!

I loved watching her make the clowns laugh today. They come to entertain her and brighten her day and she in-turn brightens theirs. There she goes letting her light shine again. This girl has packed more living into her four years than I have into my 37. How does she do that? She makes everyone smile, this one.

The past week has been a roller coaster. We have been through the wringer emotionally as we watched her heart rate dip while she endlessly slept and anticipated her departure. And then as we witnessed that heart rate come up and settle out we saw her filled with life again and hope was renewed that we might get to take her home. She is still in the hospital, but making improvement. The goal is to wean her from her IV hydration and Potassium and get her back to taking her fluids through her ng tube again. The problem is, that she has diarrhea that won’t abate and kidneys that are damaged and dump large amounts of Potassium from her body.

So, we’re working on those things these next few days and hoping for one more chance to have our girl at home with us. She is weak and hasn’t left the bed but to use the restroom, but her spirit is strong and her funny bone is in full effect. The rest of us are doing well, if not a little tired. Family has stayed nearby and we have encamped around her. Children’s Medical Center Dallas is Phoebe’s 2nd home and there are plenty of people who love her there to pop in and make her day. It’s a joy to see how she has touched the hearts of so many involved in her care. Her nurses and doctors are top notch and we couldn’t ask for a better team of people to care for her.

We are hopeful and prayerful for a safe return home for Phoebelicious and to come back under her hospice team in East Texas who have been equally wonderful to us. Thank you for your prayers and support.

With gratitude, Amey

Phoebe plays peek-a-boo:

Place