Together is a Beautiful Word

I think a lot of deep thoughts that never make it onto paper.

This is one of those times in my life where life itself is happening at such a feverish pitch that I sometimes feel like I am standing outside myself, watching and just appreciating the little things.  Writing has always been an outlet for me, but lately it's been hard to find time to put into words the things I am feeling and experiencing.  If you are reading this, thank you.  We all thank you, with all of our hearts, for your support, your prayers, your help and love, your time and your caring.  So many friends and family members have been part of the sustaining force keeping us together, both literal and in metaphor.  At this moment I am watching two of my children play quietly on the kitchen floor, another working at a desk, still another reading schoolwork on the couch.  Justin is working, thanks to modern technology, from the basement of our temporary home here in Westport, Massachusetts.  The scene is simple, the implications profound.

Three days ago my family should have returned home to Utah without me and Audrey.  Thanks to the financial support of many friends and strangers, and a willingness to go a bit into debt, we were able to spend this past month together here at a furnished rental home in beautiful southern Massachusetts while Audrey has continued to work toward being capable of eating by mouth.  The children and I had a lot of adventures together, although some things did not go quite as planned.   Justin needed to work a tremendous number of hours in order to write an important document for his job, and we learned that Audrey still has a while to go before we will be able to return home.  At the end of our four weeks together, we were preparing for a somber good-bye and the likelihood of spending the holidays apart, when miraculously we were able to work out an extension of their stay.  All of the pieces fell into place at the last possible moment, and instead of a teary good-bye we spent a relaxed Saturday enjoying some of the beautiful sights in Boston, including the Old North Church and Paul Revere's home.  We'll need to plan some fundraisers later to help, but we trust that God will provide and we know that being here together is the right thing for us right now.

Since Audrey's resection surgery in August we have had weekly dilations to stretch her esophagus open, but sadly her throat has been restricturing each time.  During the dilation procedure (which is performed down inside her throat while she sleeps in the operating room under general anesthesia, so I often refer to it as a surgery), Dr Manfredi has repeatedly injected a small amount of steroids into the tight portion of her esophagus to soften and train it to relax and remain open, much like a dermatologist would treat a keloid overgrowth of scar tissue on the skin.  Ever since the surgery in August to remove the nasty scar in her throat, that newly reconnected portion of tissue has been healing and changing to develop its own new scar, and we have been working hard to keep the tissue healthy and pliable which is the first step to keeping it open.  I had felt many times that these injections are the answer to what she's needed, in fact it was the reason we came to Boston for the resection rather than staying in Utah, but I was becoming discouraged as the results still showed a lot of swelling in her esophagus.  We were beginning to anticipate the doctors recommending a fundoplication, a surgery in which the stomach is wrapped around the base of the esophagus for the prevention of reflux (the common cause of restricturing despite daily high doses of Prevacid).  It is a surgery which I have urgently hoped to avoid, partly because so many of our new friends have had scary problems with theirs, and partly because of an unexplained ominous feeling ever since I'd first heard of the surgery when she was an infant.  But then, on Friday November 9th, we received the unexpected news that she had stayed open between dilations.  He had been removing the old stitches out of her surgical site each time he saw them over the past several weeks, and it is his theory that these old stitches had been the primary reason for her throat closing down each week as the tissue worked to push out the old bits of string.  Now that they're gone, he's hoping we are out of the woods.  Furthermore, he says the tissue looks great and is thin and pliable, and he does not need to inject any more steroid because the wall of the esophagus looks beautiful.  Wow.  So now, Dr Manfredi is going to try extending the number of days between her dilation and see what happens.  Instead of going to Boston Children's this Friday, we'll be going next Tuesday instead, putting the dilations approximately 11 days apart instead of seven.  If she has not lost ground, we will spread them out even farther.  The hope is that we will reach the point where no further dilations are needed.  We are cautiously optimistic, myself perhaps less so than the others because it seems like we've been here before and always wound up having more problems, but even so, it is a great place to be for the moment.  He said to let her try eating whatever she wants to this week, because he left her pretty open with 15 millimeters at her smallest point.

 

My whole life seems inside out.  I have no idea when I'll be able to return home.  But for the moment, things are relatively peaceful.  There are endless blessings to count.  We were safe during Hurricane Sandy--more than safe, we were even staying at a hotel inland after visiting the Sacred Grove in Palmyra, New York, where we miraculously spent a clear and quiet morning with the forest all to ourselves before the winds even began to gust, despite heavy rain everywhere else all around.  We were together this week for my birthday, and we'll spend a quiet and joyous Thanksgiving together.  We still don't know if we can be together for Christmas, it all depends on whether Justin's work feels he can continue to work away from his office.  But the way I see it, ever since last Saturday we are on bonus time, so it already feels like Christmas.

I look at my children's faces as they grumble over their homework and watch the two babies learning to share while they play.  I crack the proverbial whip with a stern demeanor, but inside I am smiling.  Audrey took her first steps this week and the others were here to witness it.  Much like the grief process, I believe that healing and happiness are multi-faceted.  These past few weeks, I think we've seen every side.