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.

Perspective, Again

We went to the hospital today for Elijah's echo and cardiology check-up. The nurse called as I was about to get in the shower this morning to ask if we could show up an hour early in order to have the echocardiogram before the appointment with the doctor. (I told the scheduler when we made the appointment that the appointment was to discuss the results of the echo with the doctor and it seemed a little odd to me to have it before the echo--but she didn't listen to me. After all, we've only been doing this for six years.) So I threw on clothes and we rushed out the door and were half an hour late but they got us in anyway. I'm very thankful that we didn't have to see the doctor, do the echo, and then see the doctor again!

As I sat perched on the edge of the exam table during the echo, holding Elijah's hand, wearing Narah in the Ergo, answering his questions about the movie he was watching, and trying to keep Narah from watching the same, I thought about how things have changed. Elijah asked to hold my hand, but didn't really need it. He lay back nonchalantly, chatting with the tech and watching Cars--a far cry from his early echos when I had my hands and attention free for only him, but needed all of both to help him stay fear-free and still. I thought about those changes again as I nursed Narah in the exam room while the nurse was struggling to get Elijah's blood pressure (it's always been almost impossible to take with a machine) and doing his EKG, then talked with the doctor while bouncing Narah and trying to keep Elijah from hacking the computer, then gave Elijah his tube feeding while we waited for our paperwork (and kept all the gear I needed for both kids in one bag!) Once upon a time, it took me and another adult and a duffel bag of stuff to go to Elijah's doctor's appointments.

Anyway, we came home and Elijah covered the kitchen table with matchbox cars and I ate too many cookies and laid on the floor with Narah and escaped into a novel with happy endings for awhile. Then I got up and hustled Elijah out the door to soccer practice and went to get a few things done. And I looked at our living room, cluttered and chaotic, and felt profoundly grateful for several of the things that I'd been feeling stressed out and frustrated over just this morning.

I'm thankful for this day--for the hustle and bustle and the chance to just laze around for awhile in the late afternoon--for a husband who juggles it all with me, for two (when it really comes down to it) healthy kids and all the work and mess and chaos that's a sign of their presence in our home. The work and mess and chaos and sleep deprivation are hard for me, but it's not hospitals and clinic visits and med schedules and life-or-death.

For that, and for the ability to recognize it not only mentally but emotionally, I thank God.

This is one of the places I've been doing a lot of reading. Her Practices of Mothering have been particularly helpful. And comforting.

Close to the Ideal

Yeah, that's about right:

"See, conversation is always impromtu, and I am clumsy. I trip over and fumble words, jumble my thoughts together, stop short for fear of saying the wrong thing, or blurt too harsh or completely thoughtless. Then I lay, staring into the dark, wincing again at how boorish or furtive I was that day.

Putting pen to paper, or keys to screen, allows me to pour out my soul one word at a time. Then, I edit until the words waltz and harmonize (at least, I get closer to that ideal). Writing gives me confidence to lay down my “Everything is Fine” false front and be genuine: depressed, sad, silly, confused, angry, sarcastic, hopeful, tired, crazy, thoughtful, hurt. This woman is all of those things every day."

The rest of Joy's post is here.

The last of the Christmas company left today, two weeks almost to the day after our festivities began. I spent yesterday down with a bout of mastitis, which I'm thankful seems to have been short lived. Today I spent trying to get my bearings without going overboard, since I jump full-bore back into the routine after that, with the exciting addition of a cardiologists appointment and echocardiogram Wednesday, and most of a day of back to back appointments with our new craniofacial team the following Monday.

I feel cloudy, muddled. Part of that--probably a large part of it--is just the tired talking. Narah has been sleeping progressively less and less for a good month and a half now, so I'm sleeping in two-hour stretches, if I'm lucky. Another part is that I was blindsided by November, this year, and still feel like I'm gasping for air. I think it's likely that I've been too busy to pay much attention to my grief since we moved, since we got word of this new job, since Narah was born. And I guess I forgot what they say about the second year.

I've been reading a lot the past few days, and thinking a lot. I miss this space; I miss writing regularly. But I feel like I've lost my voice. It feels like I can't put together anything coherent out of what's whirling in my head in the time I have to write.

Tonight (thanks to Molly Piper) I'm listening to this: