Lead, Kindly Light

Yesterday I had the opportunity to spend a few minutes standing alone at the ocean's edge at dusk, contemplating the path ahead. The landscape was very quiet, very cold, and very blue. The darkness was deepening quickly, and as I drank in the scene the words of a hymn rose up immediately in my mind as though they were painted upon the canvas laid before me.

"Lead kindly light, amid the encircling gloom.
 Lead thou me on!
The night is dark, and I am far from home. 
 Lead thou me on.
Keep thou my feet, I do not ask to see
The distant scene, one step enough for me."

As I sang them, tears streamed down my face, for grit and gratitude, fear and faith. We're in a holding pattern. Surgery is tentatively rescheduled for February 2nd, but we've decided to wait here in Boston while she recovers and they want to see her next week to check the progress on her lungs. I have been so blessed by the kindness of friends here in Southern Massachusetts, thankful to have a wonderful place to stay where we feel loved and wanted. I miss my family so much and I don't know how soon things will work out, but for now we're just going forward in faith. Thank you for your prayers.

"So long thy power hath blest me, sure it still
Will lead me on
O'er moor and fen, o'er crag and torrent till
The night is gone.
And with the morn those angel faces smile, which I have loved long since and lost a while!"
                                                                        -poem by John Henry Newman

Waiting Games and Uberfriends

This morning we thought we had a reschedule date of a week from Thursday for surgery, but then this afternoon Pulmonology and Anesthesiology said that was too soon for her lungs to be ready for the intensity of this surgery. We'll find out more tomorrow about the earliest they're comfortable with, and if that date works for our family. We need a 6 week window for the actual surgery and recovery in Boston. The farther along we get in the spring, the more challenging it is to plan that block around major, irreplaceable family events. Also, if I fly home for the waiting period, she might catch another bug in the meantime. If I don't, it puts a huge strain on my parents and family. Praying for guidance tonight and very thankful to Brenda Spearin and kids who picked me up in Brookline and drove the hour to their home in southern Massachusetts, where Audrey had a blast playing with the kids until bedtime. Settling in with her new nebulizer, and hoping for more answers tomorrow.

Audrey has had the BEST TIME playing with Brenda's kids, and sweet Brenda has spoiled me rotten. Thank you for being such a wonderful friend! You are completely amazing!

Disappointing News

And the verdict is..... no surgery tomorrow for Audrey. After 16 hours of travel, lost luggage, 2 rough nights' sleep, 8 hours of appointments in the hospital, blood draw, x-rays, prescriptions, waiting rooms and discussions, the phrase "All dressed up with nowhere to go" comes to mind. I don't know where we'll sleep tomorrow night, when surgery will be or when we're coming home, but I'm thankful for their thorough concern for our little girl, and I'm thankful beyond words for the immense kindness of our friend Wendy and her mom who helped us get to the Yawkey from the airport last night despite the crazy hassle of filing a report with the airline for a lost carseat with a worker who'd never done it before, a delay that led to Wendy's mom getting a ticket from the testy curb guard at the airport. Wendy is an angel, and gave us treats and hugs and helped us stop at the grocery store between valiantly fighting wild Boston traffic and roads to the Yawkey. I am a lucky friend. It would have been so much easier to have gotten the "No" a couple days ago, but now I can only walk forward with faith that things will work out somehow. Taking deep breaths and a chocolate chip cookie break before walking home in the dark. It's going to be fine, and this will be best for Audrey's health. I got to listen to harp music during our lunch break at the Yawkey House, played by a woman with MS in a wheelchair who volunteers her music for the families staying there. It made me feel like home. Everything's going to be OK.

Both tonight.  All better now.

Moment of Truth

Moment of truth; meeting with anesthesia in pre-op in a few moments to decide if surgery is a go. The nurse practitioner said her lungs sounded junky, so it could go either way at this point.

On Our Way!

Boston Children's Hospital, here we come!! It's great to see her personality back after this week's nasty headcold. There's still a chance they'll delay surgery because of it, but after multiple phone calls and a visit to the pediatrician, Boston said to bring her. Here's to a great surgery and many improvements ahead.

Prayers Requested

Audrey will have major surgery on her esophagus in Boston on January 12th. They will enter her right side under the shoulder, cut out a bad segment of esophagus and remove two recurrent fistulas, and lightly stitch her trachea to keep it more open. She and I will fly out next Sunday morning the 10th, and stay our first two nights at hospital housing before going inpatient for at least two weeks. Please join us in praying for her doctors' hands to be guided and that she does not stricture repeatedly during the healing process as she did when she was smaller, so that we can come home quickly and stay home.

A Dream is a Wish Your Heart Makes

"Yay! We made it!"

A very special dream came true for us this week when we had the opportunity to take our children on a trip to Disneyland for the first time in six years. For Audrey it was the first time in her life, and something she'd asked about and wished for for years! I can't really imagine a more wonderful sixth birthday for Gideon or pre-surgery escape for Audrey. A huge thank you to our parents for their help making this dream come true. Justin and I survived record crowds and the full kaleidoscope of moods and behavior of our five children to have an absolutely wonderful time, made the more perfect by his parents joining us for four days. We attended church on Sunday and visited the ocean at Crystal Cove State Park at sunset, then spent five days I'd planned in various themes (Princess, Star Wars, California Adventure, Pirate, and concluded with Gideon's 6th Birthday). We had a girls lunch with the Disney princesses, a family birthday breakfast with Mickey, and we were surprised twice when Gideon's photo was displayed on our Star Tours flight as being the rebel spy the bad guys were looking for. We played in the snow with Olaf, trained to become Jedi Knights, cavorted with pirates on Tom Sawyer's Island, ate at the soon-to-be closed Big Thunder Ranch BBQ, and my big kids loved using "fast passes" to ride the roller coasters in rapid succession--Aaron proudly boasts that he rode the infamous California Screamin' 8 times in a row. Disneyland was especially lovely at night--I'd never seen Disneyland dressed up for Christmas. After early bedtimes all week, we stayed up to watch "Fantasmic!" on Friday and closed out the park around midnight with one last visit to Star Tours where the entire ship sang Happy Birthday to Gideon. Mischief managed.

Me Treasurrre!

 Teacups!

Loving Daddy!

On the giant ferris wheel!