"Whoever survives a test,
whatever it may be,
must tell the story.
That is his duty."

--Elie Wiesel

Still thinking about what I think about this. . . .

Come Say Hello

I'm guest posting today over at Birthing Beautiful Ideas. Come by and say hello!

How Many Shoes Does That Make?

Four months into our post-move, rear-detachment, gear-up-for-deployment life, we're moving again.

The deployment was canceled (and Dan's unit put back in the hat for the next year) the funding was cut, and the ADOS position that he moved up here to fill went away. So it's back to one-weekend-a-month and hold down a "real job" on the side, back to where we came from four months ago. It is not back to our house, which has renters living in it. So we in turn become renters for half a year or so. We made a flying trip a week ago to find a place and sign a lease.

Now I need to go pack!

It may be
that when we no longer know what to do,
we have come to our real work,
and when we no longer know which way to go,
we have begun our real journey.
The impeded stream
is the one that sings.

--Wendell Berry

My Job is Simple

Angela of Little Bird wrote a guest post today over at Birthing Beautiful Ideas. Here are the last two paragraphs:

"At least I can feed and rock and soothe B. . . .

"I can’t go to his sister.  I can’t pick her up, rock her, stare in wonder at her darling face, marvel at her growth.  B will be one month on the ninth.  She would have been seventeen months on the fifteenth.  I miss her.  I miss all of the nights I didn’t get to sit up for hours, nodding off in the darkened nursery with her sweet baby weight snugged in my arms.  I couldn’t comprehend the precise nature of what I was missing until I had B, and the knowing makes the missing more acute, sharper, so painful, the sorrow like lead weights that have settled on my chest.

"I am my own worst critic, yes I am.  There is pressure – internal pressure, not external – to be thankful for every breath, every cry, every moment of joy, but that is impossible.  I am trying to give myself permission to feel tired, overwhelmed, emotional, elated, drained … like a normal mama.  There is no rule about this babe being perfect simply because the one before died.  He will cry, he will frustrate, he will have bad nights.  I need to stop fretting about whether or not I am doing things correctly and remember my job is simple: to love and nurture him as he grows and becomes the person he is meant to be."

Yes, that. I'm trying to remember.

Two of the reports from Elijah's slew of appointments arrived in the mail today. I'd like to write a longer post about the nutritionist's report when I have more time. The highlight of the audiologists report:

"Elijah will benefit from preferential seating in the classroom setting to help maximize access to instruction."

One big point on the homeschooling side of the tally-sheet--I am so glad I don't have to try to arrange for his seat in the classroom to be moved to accommodate his hearing loss.

***

In other parenting news, today's occupational therapy involved using a mouse to play a computer game. Not sure if the points I earn for an OT appropriate activity outweigh letting him play on the computer for an hour or not. But it got the job done for today.

Almost Forgot to Mention

I originally wrote this update (on 9 January) to share with family and friends. Then I was writing a post here and wanted to link to my post about these appointments, only to realize I'd never actually written that post. So here it is:

We moved at the end of September, and have been working through the process of getting established with a new insurance provider and a whole new care team for Elijah. This month saw the beginning of what looks like it's going to be a whole string of appointments for him. We saw cardiology Wednesday of last week, and spent eight hours today (Monday) with the craniofacial team.

The cardiology appointment last week was inconclusive. Elijah's previous medical records hadn't arrived by this appointment, so all the doctor was able to do was confirm that the aortic root is still dilated, and it's still not enough to be of immediate concern in and of itself. We'll probably know how it looks in comparison to past images after our records arrive. He also said that the left chamber of Elijah's heart is enlarged, which is new. Again, we're hoping to know more after the cardiologist reviews past images, but for the time being he wanted to plan for another echo and check-up in 6 months.

Today's appointment was exhausting, but overall I think it was really positive. We saw seven different providers and Elijah had an x-ray of his neck. A few of the highlights:

*Dan had the day off work, so we were both able to be present at the appointments, hear and ask questions first hand, and juggle the kids.

*Elijah finally had a hearing test where he was cooperative enough to gather the necessary information to tell whether or not he can hear. He has (low-end-of) normal hearing in one ear and some hearing loss in the other ear--but the hearing loss is due to fluid behind the ear drum *not* a degenerative condition. Three cheers!! (Long-term/permanent hearing loss is often associated with PRS.)

*We have some good leads for various options for speech and feeding therapy--speech through the school district and/or a private provider, feeding through a private provider and/or the hospital's feeding clinic. The dietician here seems much more familiar with blenderized diets than the one we worked with before, and it looks like she'll have some good suggestions for helping Elijah gain some much-needed weight. She has recommended that he be evaluated for enrollment in the hospital's intensive two-week feeding clinic, which is something I'm ambivalent about.

*The ENT is ordering a sleep study as a first step in dealing with Elijah's sleep-breathing issues, and a swallow study to see if we can learn anything pertinent to his eating.

*This new team has a craniofacial pediatrician whose job it is to oversee the big picture of Elijah's care--something we haven't had before. She spent a long time with him and us today, asking lots of questions and thinking aloud with us. She wants to pursue a more definite diagnosis again, and sounds very positive after her exam that we can make more progress in that direction. She is referring us to two more doctors, one who is both a craniofacial specialist and a geneticist, and one who is both a craniofacial specialist and a cardiologist. She is running interference with the cardiologist we saw last week for us, without my even having to ask. She is thinking about his care over the long haul as well as the next year. In short, she is wonderful! And I am excited to have some help in managing his care from someone with a career's worth of expertise in this stuff.

Permission: Granted

This, this is what I needed to hear today. Permission to be human.

Imagine

So this is an old editorial, but I just wandered across it today.

Go ahead and read it. Then come back.

And read this. And then look at this. It's mostly pictures, so it won't take long.

Just to give you an idea.

When I was pregnant with Elijah, in the third trimester I had an ultrasound because he wasn't growing, and they diagnosed a single umbilical artery. When I got home and googled that phrase, I found scary statistics like 13 to 56 percent of babies with an SUA have an anomaly of some kind. I also found discussion threads from parents whose babies also had an SUA, who were considering abortion. Because their babies might be--I'm not sure what to say--less than physically perfect?

Elijah, May, 2011

We drew the short straw, so to speak. Elijah turned out to be one of the babies with an anomaly. 

I can't imagine choosing--I can't imagine anyone choosing--to make his life go away.

Afternoon Nap

The winter light comes pale and hesitant through the blinds, the quilt my grandmother made is smooth across the bed under the window, and I am holding this warm, solid little bundle of strength and determination and beauty and happiness as she wrestles around in my arms, smelling her soft, thick brown hair when she rests her head on my cheek, singing snatches of an old song I learned from tiny, old Mrs. L--swinging her feet in her wheelchair, with a twinkle in her eye--and the old chair in the corner creak-creak-creaks and we are rocking, rocking, rocking, and it is good.