Martha's Vineyard, and a Blessing

What a lovely weekend (once the squirrely older kids got in line)! We attended "Christmas in Edgartown," a small town open house event in Martha's Vineyard, and explored the island for the first time in our lives. Saw lots of beautiful stuff and ate amazing seafood. We love the small town atmosphere and off-season feel! Watched the annual Christmas lighting of the Edgartown lighthouse, went to the parade where Santa arrived on an antique fire engine-- much to Gideon's awe, and to our delight Santa disembarked and walked right up to say hi to Giddy.... who just kept staring at the fire engine.

 Later Baby G got to try his hand at pretending to drive the fire truck, it made his day!!!! 

Audrey had a blast cranking the old fashioned siren

 and cuddling the stuffed animals in the Teddy Bear Suite, an annual event at the Harbor View Inn.

We were blessed with a beautiful warm evening on the night before the parade, that was great for watching the lighting of the lighthouse and exploring the different free nighttime events.  We even got to ride on a horsedrawn carriage!

 

Then after the parade we got to meet Norman Bridwell, the author of the Clifford the Big Red Dog books (which are set in Martha's Vineyard, where he lives... in the books he calls it Birdwell Island). 

Then we headed back to the mainland and attended a Christmas party at the Boston church where I attend when the kids aren't visiting, drove the ninety minutes back home and then went to church this morning at our local building here in southern Massachusetts.  When we got home from church, our neighbor was mowing his lawn and allowed Gideon to ride on his John Deere lawn tractor, to his great delight!

After dinner, we all made gingerbread houses and had gingerbread pop tarts and hot spiced cider, and watched Christmas specials until bedtime.

Simple joys. Audrey's had a bit of a head cold and has been struggling with lots of reflux at nights, but has been so happy during the daytime and flirted a ton at church today! We arranged to give her a priesthood blessing today right after church.  In our church, two worthy men who have been ordained in the priesthood of God can give a special blessing of healing by placing their hands on a person's head and listening carefully to the guidance of the Holy Ghost to know what words to speak.  It is a sacred and beautiful experience for all present, since through faith miracles can be wrought this way, and remarkable counsel is invariably given that often proves as valuable as the healing power itself.  We had been worrying about the decisions ahead and hoping the Lord would bless her with healing and to have her throat stay open, but today when my husband spoke the words he felt guided by the Lord to speak, we received the same answer as we did in June when the missionaries gave her the blessing in the Salt Lake City hospital while she was in all those weeks with the perforation-- that her life would touch many hearts, that she would be strong through her challenges, and that her days would be full of love. I took it as very significant that nearly identical words were spoken by the elder giving the blessing back in June, and by my husband today, even though he was not present for the earlier blessing.  I truly believe that the words spoken in these blessings are direct counsel from the Lord on Audrey's behalf.  Clearly this is a message the Lord really wants to get through to us. Patience on his time, and trust in his plan for her.  So we are just enjoying one another each day right now, and very happy to be together!! Trying to just open our hearts to whatever the Lord has in mind for our family, and receiving every blessing with gladness. Thank you to all of our friends old and new, and to our family for their support. We love and miss you all!

Thoughts of My Heart

"There are no happy endings, because nothing ends."  
                                                                                                             -The Last Unicorn by Peter S. Beagle


I now realize that all along I've been looking for the "happy ending" in this Audrey story.  I'm so ready for it.  The adventure has a finish line ahead.  She's going to be able to eat soon, and we're going to go home soon, and we'll all shout hooray, and one day I'll look back on this adventure and say "well, that was hard."

But what if there's not a finish line?  What if Miley Cyrus was right, and (forgive me some massive cheese) "there's always gonna be another mountain, I'm always gonna wanna make it move, there's always gonna be an uphill battle, sometimes I'm gonna have to lose.  Ain't about how fast I get there, ain't about what's waiting on the other side.... It's all about the climb."

I think it's a natural human tendency to want to tie our experiences up in neat little bows.  We crave closure.  We need to feel that satisfying resolution of those dissonant chords, or else we feel itchy and awkward; we want to distance ourselves from whatever bits of our lives are refusing to get in line and blocking up the way of whatever brand of happiness we have designed for ourselves. Welcome to Holland.  Get comfortable, this isn't a visit.

So much of religion teaches us about overcoming the natural man and enduring to the end in faith.  Maybe this craving for the finish line is another part of our natural selves that we are supposed to overcome.  Maybe letting go of that can enable us to better continue to serve and to lift long after the initial zeal for someone's situation has passed, to continue to offer hope and comfort even when there is no end in sight, to "be not weary in well doing."  My dear friend Amy wrote, 

"There may not be a finish line or a light at the end of the tunnel, but that does not mean you quit.  You keep going and you keep trying; a true champion never gives up, even if you can't finish the race."

Numerous examples of this principle have been running through my mind today.  In Homer's Odyssey, the sailor king Odysseus endures challenge after challenge in his effort to return home to his beloved wife on the island of Ithaca.  His journey at last brings him home after twenty years, he reunites with his family, only to face yet another long series of challenges in his homeland.  The poem ends without a tidy resolution, as he prepares for yet another battle, this time to win back the respect and fealty of his countrymen... and it just, stops.  As though the storyteller went to get a drink and never came back.  Maybe the phone rang, that's usually what happens at my house.  Anyway.  That ending would sooo not make the cut in American cinema.

In another story, there is an enormous boulder blocking a road.  The Lord shows a man this boulder, and instructs him to push against it.  The man diligently obeys.  For weeks and months on end he pushes on this boulder with all of his might, day after day.  He faces frustration and exhaustion in the process, but every day he just knows that any moment now that boulder is going to budge and he will be able to move it, because the Lord has asked him to.  Finally the Lord returns, and the man sorrowfully tells him, "Lord, I have pushed on this boulder day after day with all my might, and still I have not succeeded in moving the boulder. Forgive me, I have failed."  Then the Lord says to him, "Precious son, it was never my intention that you move the boulder.  I could do that myself at any time I chose.  But now, see how you have changed in this time.  Your back has grown brown from the sun.  Your arms have grown strong from the effort.  You have become what I need you to be. The strength you have developed has made you a warrior fit for my kingdom."

We are at a very difficult crossroads in Audrey's care.  This surgery was supposed to work, and it didn't.  I don't know what will work at this point.  I don't know when we'll be going home.  And we aren't the only ones.  I know other families in a similar situation, many who are now my good friends, who have come so close to one finish line only to be diverted to another leg of the marathon in this strange test of patience.  I love these families so much.  They inspire me and I'm so thankful for the comfort of their friendship and understanding.   Sometimes our journey feels endless. We climb over one mountain, only to discover another ahead.  This exhausting process has been repeated over, and over, and over.   The hope of home, the disappointment of discovering that more is in the way.  Sometimes, as now, it threatens to beat down my spirit.  Every time we make progress on her stricture, it returns with a vengeance, often when we least expect.  I feel as if the Lord is saying, "here's the lesson of patience and compassion, have you learned it?  ok.  Don't forget.  No really, don't forget."  Do you love me? Feed my sheep. Do you love me? Feed my lambs.


Allow me to interrupt my own philosophical rambling for a moment to give you a picture of how I have been writing these words.  I spent much of today in my pajamas just thinking and writing to release the thoughts racing through my heart, with a pressure inside so immense that it translated to a literal headache.  My husband and children allowed me the quiet time I needed, and life went on without me.  The sun came out and my husband took a break from work to go outside and play with the children, but I instead lay in bed, having retired there when my headache became too painful to write any more.  I could hear them outside playing, and one part of me longed to shut it out and nurse the pounding inside my head, while another part wept with longing to join them.   Tears prickled at my eyes and I felt I lacked the strength to get out of that bed.  And then, a scripture came into my heart with great power like a voice of perfect mildness, "You have but to look, and live."  I walked to the window, and this is what I saw.

Is that not amazing?  Sun rays and all.  I snapped this picture fast because I couldn't believe how beautiful it was.  Can you imagine a more welcome sight to me at that moment?  Or any better medicine?  I managed to pull it together and go outside to join them for a few minutes, and in those few minutes of golden light my burden was lessened.

Whenever I begin to get bogged down in discouragement, that is the moment when I have to force myself to count my blessings.  I force myself to look up and around, and those blessings are plain and evident.  I try to name each of them in my heart, and it is a bit like putting one foot in front of the other.  I can't see the road ahead.  I don't know where it will lead.  But I have to trust that in each moment there are things I can learn, things I am meant to learn.  Things to be grateful for and people around me that I can serve.  

The Martin handcart company was a group of Mormon pioneers who crossed the plains from Missouri to Utah in the late summer, without wagons because they were too poor to afford them.  They crossed the plains on foot, pulling their handcarts behind them without the aid of animals.  Although many handcart companies successfully made the journey, the Martin company suffered terrible casualties due to equipment failures, food shortages and severe weather.  A fourth of them died along the way, many more were permanently injured.  Despite these immense challenges, one survivor later wrote,

"Every one of us came through with the absolute knowledge that God lives, for we became acquainted with Him in our extremities.

"I have pulled my handcart when I was so weak and weary from illness and lack of food that I could hardly put one foot ahead of the other. I have looked ahead and seen a patch of sand or a hill slope and I have said, I can go only that far and there I must give up, for I cannot pull the load through it. … I have gone on to that sand and when I reached it, the cart began pushing me. I have looked back many times to see who was pushing my cart, but my eyes saw no one. I knew then that the angels of God were there."

Yesterday as I cut my son's hair, we talked about how some prayers aren't answered the way we want them to be.  We don't know all the reasons, but there is a reason nonetheless.  Even the son of God, facing death, prayed that the Father might remove that bitter cup, but in the same breath he offered this submission,  "Nevertheless, not my will but thine be done."  The Father did not remove the cup because there was a necessary, glorious purpose in his suffering.  But his suffering was great.  I believe he suffered greater anguish of body and soul than any man ever has, to the extremities of every kind.  That's how he understands and knows exactly how to comfort me, one blessing at a time.  One foot in front of another.  

And for those of you who've stuck with us this far, thank you. 

I wonder if Homer never intended for the Odyssey to have a tidy resolution, but instead meant to say that our adventures in life end only with the beginning of new adventures.  I believe that we are sent to Earth to learn and to grow in order to add to the glory of God, and that "men are that they might have joy."  I believe happiness and joy are different from one another.  If true joy is to be found in learning and growth of the deepest kind, the kind that brings us closer to him so that we may become better servants, then maybe in this case it's true in another sense what you always hear, that the joy is in the journey.  Our experiences, if not always happy, are strengthening us, deepening our appreciation for the blessings in our lives, opening up our world by introducing us to people in extraordinary situations, giving us more empathy for others, and teaching us a different side of joy.

Dennis E Simmons wrote: 

 

"Our scriptures and our history are replete with accounts of God’s great men and women who believed that He would deliver them, but if not, they demonstrated that they would trust and be true.

"He has the power, but it’s our test.

"What does the Lord expect of us with respect to our challenges? He expects us to do all we can do. He does the rest. Nephi said, “For we know that it is by grace that we are saved, after all we can do.” ¹

We must have the same faith as Shadrach, Meshach, and Abed-nego.

"Our God will deliver us from ridicule and persecution, but if not…

Our God will deliver us from sickness and disease, but if not …

He will deliver us from loneliness, depression, or fear, but if not…

Our God will deliver us from threats, accusations, and insecurity, but if not…

He will deliver us from death or impairment of loved ones, but if not… 

we will trust in the Lord.

"Our God will see that we receive justice and fairness, but if not…
He will make sure that we are loved and recognized, but if not…
We will receive a perfect companion and righteous and obedient children, but if not…
we will have faith in the Lord Jesus Christ, knowing that if we do all we can do, we will, in His time and in His way, be delivered and receive all that He has.^"

(You can read that entire article here, and another one by Lance B. Wickman here.)

Old Enemy

Spent a long day at the hospital yesterday on top of driving two three-hour commutes in Boston's rush hour, and got some tough news at Audrey's dilation. She is still stricturing. Dr Manfredi gave her another round of steroid injections yesterday, sent us home with a swallowed topical steroid med intended to coat the esophagus, plans to probably give her another round of chemo injections next week at her next dilation, and then the following week if she has continued to stricture he will recommend major surgery, a second resection of the esophagus to improve blood supply to the beleaguered area. He did say that the stent had left her esophagus in a much smoother hourglass shape, for which we were happy-- we are debating our options on asking for more endoscopic treatment before consenting to major surgery, including asking for more time, but of course every choice has its pros and cons. At the very least I want to schedule it for after the family goes home, so that we can spend Christmas and New Year's together. Was happy to come home to the loving arms of my family last night, and this morning Justin is stringing lights up on our tall borrowed Christmas tree!  She is grinning and giggly this morning, and toddling around holding a piece of garlic toast that she's been nibbling on. I think our main job right now is focusing on every blessing in the moment.

Our Cup Overflows

We are so happy to report that Audrey is out of the hospital!  Our family is back together at our temporary home in MA and she's busy toddling and making up for lost time! :) (She'll head in for her next procedure, a scope and probably dilation, early in the coming week, but hopefully with much less dramatic consequences.)

Wednesday night I was also blessed with the incredible opportunity to attend the Nutcracker ballet at the Rosecliff mansion in Newport, Rhode Island... Justin decided to spoil me with a ticket for my birthday. It was a dream come true.

Photo copyright Island Moving Company

Photo copyright Island Moving Company

The two oldest kids really wanted to go also, and thanks to a friend writing a beautiful letter and an anonymous donor at Island Moving Company, the dance company invited the children to attend as well. No photography is allowed inside the mansion but we had an unforgettable experience.

 

The dancers traveled from room to room telling the Nutcracker story, while the audience stood and followed until we were all seated in the ballroom for the second act. Breathtaking.

Photo Copyright Island Moving Company

Thank you to everyone who helped make this possible, including my wonderful husband for watching the three youngest so that we could attend this amazing event.  When he had purchased the matinee ticket we had not expected that Audrey would be discharged that morning, so it was a very full day--I drove to Boston to bring them home before heading to Newport with the older children.  We also had a special surprise for Justin and Audrey when they first walked into the house-- we had decorated for Christmas!

On top of that, we've just learned that we'll be together for Christmas! Justin's telework extension has been approved, so he and the older children will remain with Audrey and I until January 8th. This incredible news is still sinking in.  As if that wasn't enough, yesterday was also our 16th wedding anniversary. Justin shocked me with a gorgeous flower arrangement delivered to the house, and a sweet church member watched all 5 children and sent us to try a favorite local seafood restaurant. We've also had three meals brought to us from caring church members this week, treats and visits from neighbors and church members (some who drove over 45 minutes to reach our home), outgrown clothes from an inspired neighbor that were perfect for Eden including a much-needed winter coat, Target gift cards from a hospital angel making it easier to replace pants and pajamas for the kids, and--cream on the cake--

a tabletop Christmas tree was brought and decorated by a church family for us.

I am feeling very humble and happy; just being together is heaven to me. In fine, the magic of this week has done much to heal the experiences of the past week.

Thanksgiving Photo Make-Up Day

 Since her hospitalization over Thanksgiving was so unexpected, we did not have her cute Thanksgiving outfit with us at the hospital on the holiday. Best cure for a disappointed mommy? A makeup photo shoot!  I dressed her up, we grabbed the camera, and took about a hundred photos!  Here are four of my favorites.

Discharge Day!

More fun in the hospital playroom!

A family member gently reminded me to tone down the medical lingo when talking about baby Audrey. I'm sorry, I'm honestly not meaning to talk over anyone's head. For anyone who's confused, here's a basic summary of what's going on. Audrey's throat keeps closing down even though we've done everything we know how to stop it. We're in Massachusetts to try things that weren't available in Utah. Since she was closing down again even though we went through a major surgery in August to supposedly stop it for good, the doctor tried something new by putting a stent (piece of pipe) in her food tube to try to train it to stay open. The stent was temporary, and they were deciding how long to leave it in. After the past week, he was saying he wanted it in another week, but then after consulting with his colleagues he changed his mind and took it out today. The simple version of the result is, things looked really good and open after he took out the stent, a little irritation was all. He injected a chemo drug into the trouble spot to hopefully prevent it from closing down again. We will go back in a week to see if it is working. After all we've been through, I am not getting my hopes up. But at least it's something positive to report, and if tonight goes well she should get out of the hospital in the morning.

For my more medical savvy peeps out there, Dr Manfredi injected Mytomycin C into her stricture. It's a serious drug and makes me nervous, but we hope it works where nothing else ultimately has. She had a 12mm stent in place and when he pulled it out, he said her leak had healed over and she is currently more open than he'd ever seen. (Someone grab the Texas hairspray, quick!) We'll go back for a scope and dilation each week for a while to see what happens.

"Toss the Aquanet!  My throat's wide open and I want it to STAY!"

Reversal

Late last night I got a call from Justin:  Audrey's stent removal has been moved up to today at 11:30a.m. Apparently after consulting with the EA team, Dr Manfredi changed his mind about leaving the stent in. After removal, he will coat the troubled area with a topical steroid to discourage scarring and do some scope work, and the entire procedure will take 2 or 3 hours. We don't know what to expect post surgery in terms of her comfort, and we are also in the dark about her chances for success with this, but Justin said he is planning to resume weekly dilations/scopes afterward.