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I know it’s only the 21st, but I am already eager to put this month behind me. It’s been another month of ear issues (both ears this month) for Josh and we are not sure exactly what’s going on. We haven’t been able to get his ears stable enough/healthy long enough for even an audiology evaluation since October. He just finished up another course of strong, broad spectrum antibiotics. I have an essay coming out soon in The Mighty that will shed some light on how I feel about our latest run in with antibiotics.

In light of all of this, it is time for some mood-boosting gratitude.

  1. There is an owl living in one of the large pine trees behind my house. I hear him hooting each night at about 5:30 pm (dusk here in Minnesota in January) and sometimes just before dawn. I went out into the woods behind my house on Sunday, with my long wool coat over my PJ’s–it was ten below zero at the time, and I listened just below the tree. I cannot tell you what a singular thrill it is to hear an owl up close. But then, he decided to swoop down on some prey and I saw his wings spread over me (I wasn’t the prey). It will likely be one of the most awe-inspiring moments of my life. I feel most protective of this owl and sometimes I fancy the owl is protecting me.
  2. I’ve finally set up my own writing room in the upper level of my house. It is a light, airy space. It is a piece of heaven in my own home.
  3. Trampled by Turtle’s song “Duluth,” which gets me through these cold winters. “Still I like the quiet/Of Duluth in the winter/In the sacred bond/There’s no place like home.”
  4. The rosary. I’m not Catholic, but I’ve had lots of Catholics in my life, including my dad’s whole family. All of my kids have spent time in Catholic schools; now, Josh joins the ranks. He’s learned to pray the rosary. I’m learning too. I’ve thought much about how Mary was acquainted with this experience of watching her child suffer. I feel a kinship with her when I pray the rosary. Although, I’m not sure I’m doing it right, maybe “right” doesn’t matter so much as the act of saying this prayer with a willing heart.
  5. I was given the guidance to get my hands on a copy of Paul Kalanithi’s book When Breath Becomes Air. I elevated this book above the waiting 25 or so books on my “to read” list. I read this book in less than 24 hours; I will read this book again. It is a magnificent, life-changing read. I thank Paul for leaving behind surgery to write before he passed away last March. God be with you, Dr. Kalanithi. You’ve made a huge difference in how I view life, God, vocation, the act of writing, and how I view my son’s doctors and surgeons (I think I wanted them to be small gods–now I realize it can never be so; God can use members of the medical profession, but they will never be perfect, as life will never be perfect).
  6. My thesis project seems to be falling into place, during this second semester of thesis writing; and I have a new blog to support the putting of my thesis out into the world, when it is time. See www.heidifettigparton.com.
  7. I get to see the below view when I leave my local food co-op; even beautiful on cold winter mornings.

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Hey, hey/ It was the 14th day of April.
Gillian Welch

I am listening to my 14th of April album, Gillian Welch’s Time (The Revelator). In particular, the song April the 14th (Part 1) and Ruination Day (Part 2). No pre-tax day would be complete without a listen to this album. I always get chills up my spine when Gillan sings “Hey, hey/ It was the 14th day [stellar use of the pause here] of April.” And then check out Dave Rawlings guitar work on the title track Relevator (in particular around the 2:11 and 5:11 points–breathtaking). It sets my soul free every time. Yes, I get very excited about music. What can I say? I think that music helps us to be the people we really are, deep down inside, where illusion fails.

Here is how it looks in my neck of the woods on the 14th of April:

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The eagle has landed!

Paul Simon has a great song called Hearts and Bones, with lyrics that state:

You take two bodies and you twirl them into one. Their hearts and their bones. And they won’t come undone.

Chris and my body were twirled into one somewhere around Christmas Eve of 2008. This past week, Joshua sees a genetic doctor to look at the resulting heart and bones. First, Josh had an EKG. As I understand it, children with hearing loss or ear development issues often also have problems with their heart. Such is actually the case with my niece, Abbey, who is turning 5 this next month. She is a lovely, smart and adventurous (precocious) little girl with unilateral hearing loss (actually one ear didn’t form) and she was also born with tiny holes in her heart. She hasn’t had to have heart surgery as the holes are mending on their own and thankfully, with speech therapy, her one good ear is serving her well and she is talking beautifully. I am thinking about Abbey these days because when I met with the geneticist this past week, Abbey was the person they paused on and wanted to hear more about. It is amazing how far and in such detail they reach back to explore health issues of all aunts, uncles, cousins, second cousins grandparents and even great grandparents–as they try to determine a genetic link to explain Josh’s hearing loss. I actually don’t know that much about Chris’s extended family and Chris wasn’t at the appointment, so I just had to answer “I don’t know” to many of the questions which went beyond his family of origin.

Josh also has some extra dimples near the base of this spine. While our regular pediatrician may have never noticed this, our genetics doctor gave Josh the most thorough exam I have ever witnessed. I loved her. She was hands down my favorite doctor that I have ever encountered in all of this stuff with Josh (and perhaps ever in my life). She somehow inspired me to want to go to medical school and become the kind of doctor that she is, caring for kids with all sorts of genetic differences. This doctor just glowed with caring and exuded joy. I was only with her for about 1/2 hour (the rest of the time was with the genetics nurse practitioner, who was also very good), but during that time, I had a sense that it would all be okay. She also held Josh while she examined him and played with him, rather than having him on the examining table. Her techniques should prove as a model for all pediatric doctors. Anyway, the extra dimples at the base of Josh’s spine can be an indicator of a fixed (rather than free-floating) spine. She ordered some spinal xray films. Josh hated being held still on the imaging table for these pictures, perhaps even more than getting his blood drawn yet again (for genetic testing for specific syndromes/conditions that can cause hearing loss and/or deafness). I learned the next day that Josh’s spine was fine. Whew! We avoided another potential hurdle.

Anyway, I wasn’t surprised when they ordered an EKG for Josh (knowing Abbey’s history). Josh’s EKG looked good. Yeah!

The biggest news of the week, however, was our report from the hematologist. Her office called to tell us that the more extensive blood tests did not indicate a bleeding disorder. For some reason though, we were told that he should be retested before any further surgeries or in a year, whichever comes first. Although this wasn’t the complete “free and clear” that we would have liked, still, we know we are not likely looking any degree of hemophilia, which is an enormous relief.

We won’t receive the results of the genetic testing on Josh’s blood for 4-6 weeks. In the meantime, we need to see a pediatric eye doctor, as children with hearing loss also often have vision issues. The genetics doctor noted that Josh’s right eye is slightly smaller than his left eye. She said this is causing Josh to lean his neck slightly (cock his head–there is a technical term for this, which I simply do not remember) to compensate. Eventually, if this causes problems for Josh, he may need some physical therapy. Now this is something that I truly would have never noticed. I doubt our pediatrician would have noticed this one either.

The danger in all of this uber examination is that we begin to see Josh as the sum of all of his conditions. But to us who know Joshua best, he is just Josh–Josh with some hearing challenges and a few other small challenges. And we all have our challenges, some are just more hidden than others. Anyway, our lovely boy is all heart (and bones and blood). We love little Josh so dearly and he is the perfect Joshua for us. The perfect son for us; an awesome twirl of our hearts and bones.

One of Josh's favorite activities is pulling books off of our book shelves!

Sometimes song lyrics come my way at just the right time in my life. For example, in Dar William’s song Iowa, there is a line that says, “And so for you, I came this far across the tracks, 10 miles above the limit and with no seatbelt, and I’d do it again.” Or from her song, Blessings, which nourished me through both my divorce :

And the best ones were the ones I got to keep as I grew strong, and the days that opened up until my whole life could belong, and now I’m getting the answers, when I don’t need them anymore, I’m finding the pictures, and I finally know what I kept them for, I remember, I can see them, see them smiling, see them stuck, see them try, I wish them luck and all the blessings.

Song lyrics played a big part in mine and Chris’s courtship, where we exchanged both song lyrics and made mixed CDs for each other.

Below is a list favorite quotes that I compiled for my Facebook page:

“The thing is . . . people always expect you to be the same way. Like, you’re a rock, or something. Except . . . even rocks, like–erode . . .” Angela, My So-Called Life (MSCL)

“People always say you should be yourself, like yourself is this definite thing, like a toaster, or something. Like you can know what it is, even. But every so often, I’ll have like — a moment, where being myself, and my life right where I am is, like, enough.” Angela, MSCL

“Sometimes someone says something really small, and it just fits right into this empty place in your heart. ” Angela, MSCL

“So when Rayanne Graff told me my hair was holding me back, I had to listen. ‘Cause she wasn’t just talking about my hair. She was talking about my life.” Angela, MSCL (my own personal mantra–My hair has been about 4 different colors this past year)

On why she quit yearbook. “It just seems like, you agree to have a certain personality or
something. For no reason. “– it’s like, everybody’s in this big hurry to make this book, to supposedly remember what happened but it’s not even what really happened, it’s what everyone thinks was supposed to happen. Because if you made a book of what really happened, it’d be a really upsetting book. You know, in my humble opinion.” Angela, MSCL

“In the desert, most of one’s troubles come from distracting thoughts of one’s former life that doesn’t allow us to live in the present.” Kathleen Norris, Dakota

“In this place of which you say, ‘It is a waste” . . . There shall be heard again the voice of mirth and the voice of gladness, the voice of the bridegroom and the voice of the bride, the voice of those who sing.” Isaiah 33:10-11

“Sometimes it is best when my plane is delayed.” Me (we don’t know or understand why things happen how they do).

“Fear is the natural companion to creative action. There is only one way to live free of fear and that is to live without hope, change, or growth.” Barbar Scher

“You find peace not by rearranging the circumstances of your life, but by realizing who you are at the deepest level.” Eckhart Tolle

“The absolute yearning of one human body for another particular body and its indifference to substitutes is one of life’s major mysteries.” Iris Murdoch

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