From the Mountaintop Archives

Empty Boxes

I can't tell you why this picture of Elias is posted sideways because it's right side up on my computer. And my limited tech skills keep me from investigating any farther than repeating the steps I know again and again until I fall into the definition of insane.

Like not preparing ahead of time for the mad-rush that is Christmas and wondering why I feel so stressed when I realize that once again I've walked into the final week without a single light strung to mark the holiday.

No cards in the mail.

Every year I say next time I'll plan ahead. Make gifts all year long so I don't feel crazed to BUY BUY BUY during the busiest shopping month of the year.

But once again saint Nick just kinda snuck up on me with his bells and hearty HO HO HO to wake me to the season.

ITS HERE!!!!!

In 4 days we fly to the lower 48. Spend two nights in Seattle with my brother's family then all six of us board the same flight to Boston. I've been so busy looking forward to returning home to the East Coast for the first time in two years that I kinda forgot about this major holiday with all its rituals, fruitcake, and glitz.

Elias doesn't know about Santa Claus or baby Jesus. He is immune to the buzz of Christmas carols, Christian traditions, or credit cards sliding through machines. He is unaware of being watched by a white bearded man and knows nothing about a Mary giving birth in a manger in the middle of the night.

So I have another year to get my planning right. And to decide how I will translate this time of year to a little boy who wonders why.

Until then we'll play with the packaging, even if we need to turn it on its side to make sense of it all.

 

Ethics Forum: NEONATOLOGY at the EDGE

(Warning: longer than normal post)

I arrive at 7:40 am, ten minutes late, with Elias in my arms. He’s still dressed in his fleece pajamas and neither of us has had breakfast. Approximately 20 familiar and unfamiliar medical personnel sit crowded in the small maternity center conference room.

We are not expected.

As I squeeze past the folks sitting in collected seats by the door, I consider taking another extra chair in the back of the room, but am waived to the one open seat near the head of the table. After I sit down with Elias on my lap, Dr. Lou, sitting directly to my left, asks me to introduce myself.

"My name is Christy and this is my son Elias who spent 94 days in this NICU. He was born at almost 25 weeks and needed to be resuscitated." 

Dr. Lou passes me some papers to review and then continues to facilitate this Ethics Forum on how to support families and staff to make more informed decisions about resuscitating babies below 27 weeks.

There is a chart on one of the papers Dr. Lou hands me, published in the journal of Pediatrics, which shows the results of a survey of 107 medical staff on the resuscitation of babies born between 22 and 27 weeks gestation.

For babies born between 24 and 25 weeks:

* 5 said they would strongly encourage resuscitation
* 24 said they would recommend resuscitation but be comfortable with parents’ request to provide comfort care only
* 35 said they were neutral,
* 34 said they would recommend against resuscitation but be comfortable with parents request to resuscitate
* 3 said they would strongly discourage resuscitation

It is no wonder that parents receive inconsistent messages from doctors, nurses, and medical staff about the future outlook for their baby. But how can there be consistency when every child responds so differently to his or her premature birth? How can the medical community possibly predict the life of a child?

And who gets to define quality of life?

By his medical file alone, Elias is not a "positive outcome."  But what he has taught me is that outcomes cannot be defined solely on health and ability. And what makes for a good quality of life cannot be decided by only those of us considered “normal”.

I remember the Christmas scene in Martha Beck's memoir Expecting Adam.

Martha's three children open gifts one after the other. When the two girls open their presents, Martha sees the familiar quiver of lips that tells parents this is not the exact gift wanted. Wrong brand. Wrong color.

Adam, their son with Down syndrome, opens his gift next. He begins by unwrapping the small package taped to a larger present.

Batteries.

His mother recalls:

“His mouth fell open in astonished ecstasy as he held the batteries up to the light.
‘Oh wow!’ he said. Mom, look! Batteries!’
Before we could divert his attention to any other gift, Adam leapt to his feet and began running around the house, locating every appliance, tool and toy that ran on batteries. The whole time he babbled excitedly about all the things he could do with this fabulous fabulous gift. As we watched, it began to occur to all of us ‘normal’ people in the family that batteries really were a pretty darn good Christmas present… Something about Adam always manages to see straight past the outward ordinariness of a thing to any magic it may hold inside.”

I carry this image with me to the meeting, along with Elias. I also bring a sleigh filled with therapy appointments, medical bills, and lost expectations. For even magic comes with a price.

We are not only welcomed at the table, but I am asked to share my experience and perspective with this ethical issue that has no right answers.

I don’t know what I would have decided if there had been time before Elias’s emergency delivery to contemplate the short and long term affects of a premature child. I didn’t know then what I know now, so it is impossible for me to return to the person I was before Elias, even in my mind, hypothetically, to say whether or not it would have been helpful to receive a survey of medical professionals opinions about whether or not they would try to save my first child.

I am here to bear witness to the conversation. I am here as the lone voice for families. Families who receive gifts they didn’t ask for but love nonetheless.
Not despite the challenges but with them.

As the meeting comes to a close, Dr Lou says, “Actually, before we end, I’d like to see if Christy has anything else to say since she and Elias represent why we are here.”

I say something about remembering that every child, every parent, every family is different so though in theory I believe in consist information the whole concept challenges me because of how unpredictable these smallest of children continue to be and that as parents our perceptions of what is OK can change and grow right along with them.

But Elias speaks more clearly, more succinctly, than I.

In rare form from his usual wiggle worm self, he sits contently on my lap for most of the meeting. He looks around the room at these people who are present for the most intimate of passages, who are not gods but humans who are meeting to discuss the ethical decisions and consequences of their work, and every few minutes, as if to remind them that statistics and outcomes represent children, Elias sticks out his hand, more of a salute than a wave, and says, "Hi."

(Photo taken last Christmas in Oregon)

what makes writing a blog so different from my years of writing a journal

People speak back.

Thank you Sara for sending me this image of six year old Toby, another boy diagnosed with Cerebral Palsy who delights his mama daily:

"He cracked me up yesterday - some song with rhythm came on the radio while walking back from the bathroom to our table at a restaurant and he was dancing while cane-walking!  Step - jiggle cane in the air - put down and step - repeat... "

And for all of you who tell me that my words matter. Thank you.

"All done hug"...

...Elias says and pushes my chest away from his tiny frame.

I knew this day would come.

I even longed for it at times, especially towards the end of my breastfeeding days, when I just felt so tired of being needed.

Mamamamamamamamamamamamamamamamammamamamamamamamamamamama

I didn't want to hear my name called. I wanted free hands.

To regain perspective, I would remember the feeling of sitting by his isollete. The ache of empty arms. The endless wait to hear his voice.

The even longer wait to  nurse.

MAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMAMA

When I didn't want to remember the NICU, I'd remind myself that he wouldn't always need me so intensely. That someday he may feel embarrassed by my affection.

He may even ask to be dropped off at the corner before his school so his friends don't see the pumpkin-colored Dasher his parents drive. (Sorry Mom and Dad, for what it's worth, I think its cool now.)

And as a little boy, he'd start wanting to hang out more with Dada. Especially with such a hands-on father who changes diapers, cooks meals, plays floor games, gives baths, reads stories, and tells him he loves him before laying him down at night.

dadadadadadadadadadadadadadadadadadadadadadadadadadadadadadadadadadada

Elias wakes crying and calls, "Nuggle Dada."

During dinner Elias says, "Bite Mama...bite Dada," making sure to eat a balanced meal from both plates.

Throughout the days when I am home with him and Nick is at work, Elias crawls to the door and says, "New tuck, ride with Dada... new tuck, ride with Dada!"

(Nick and I recently laughed about the odd coincidence of the arrival of the truck and Elias's equal longing for both parents. We joked that he bought it to bribe his son.)

And during a therapy meeting, Elias wiggles out of my arms and says, "Go to Dada"

"See Dada"

DADADADADADADADADADADADADADADADADADADADADADADADADADADADADADADADA

I knew this day would come.

I thought I'd be ready for it.

When you have a child with developmental delay, that precious baby time is elongated, and with this extension comes both good and bad. You desperately want your child to "catch up" and yet you grow to cherish your dependent little one. Your baby.

So when those tiny hands push your chest away, the crush of gravity suddenly feels as heavy as it is light.

As light as it is heavy.

Joy and grief tumble at your feet. But before you can choose sides they rise, dust themselves off, and run their fingers through your growing baby's hair.

And in other ways you haven't

My left hand is bruised from playing indoor soccer on Sunday.  Sore from the strike of Stick's elbow, as I tried to block him from passing me by throwing my five-foot-body in front of his six-foot-one. 

Every once in a while it actually works.

And my less dominant hand is also bruised from Nick kicking it during our Monday night house ball game.

Here's how to play:

Step One: Clean the living-room. Which in our case meant picking up three drums, eight board books, Weebles, mama's shoes, Kix, all kinds of bags, Elias's walker, and a soccer ball. And that's the short list.

Step Two: Create a rectangular court with a center line and rough boundaries. We use the edge of a throw rug as center court and the couch, desk, stools, bureaus, and walls are all our uneven sidelines.

Step Three: One of you serves a balloon--less dangerous to body and house than a beach, exercise, or tennis ball but we've played with all three--and you hit or kick it back and forth until you get tired. 

The rest of the rules are up to you.

Tonight we didn't keep score. We just drilled the balloon as we aimed to get it past each other to reach the floor.

On defense, we anticipated, rushed, blocked, stretched, and reached.

On offense we dribbled, juggled, twirled, faked, and spiked.

And on both sides we laughed.

Oh, did we laugh.

Before you know it you've changed

I remember holding Alexandra's hands in sixth grade and jumping up and down as we counted the days till Christmas vacation.  No schoooooool!!!!!!!!!

That's kinda how I've felt all weekend. Like that little girl with no homework and lots of time to play. No more papers. No more take home exams or Internet discussion board responses to write. No presentations. I love the school schedule with its gradual beginning, building intensity, and planned breaks. A familiar cycle that repeats every fall, winter, and spring, and oh, don't even get me talking about summer. Its December in Anchorage, Alaska. Where we have more light than Barrow, a town that won't see a sunrise till March but, still, its not the time to be dreaming about summer, not when the sunrises at 10:03 am and sets at 3:41 pm. Not yet.

I have one final class commitment Tuesday night, but since my partner and I already presented, we get to sit back and relax. Its a class called Ethics for the School Professional and for our presentation we created a game to address "every day" ethical decisions. We wrote scenarios on index cards, everything from surfing the Internet at work (who me?) to tasting bulk food items (mwa?) to spotting a friend's husband with another woman (thankfully, not yet me--for real).

One of the scenarios I chose to include said: "You have a handicapped parking permit for your son,  do you use it when he is not in the car."

This scenario was obviously pulled from my life. As you might remember, from a previous post last May, when Dr. Brennan first issued the permit I felt reluctant to pick it up. I put it off for weeks. We don't need it. My son's visually impaired with Cerebral Palsy, Chronic Lung Disease and a host of other disorders and dysfunctions too long to list but he's not handicapped. Look how far he's come; those spots by the door should be reserved for people who really need them, people in wheel chairs or parents with babies who who are blind and deaf and dumb and unable to move. Not Elias.

When I finally went to the DMV, I tucked the blue card away in the glove compartment and rarely chose to park in handicapped spaces, carrying Elias just as I would any baby or small child who didn't want to walk.

The first few times I pulled into a handicapped parking spot, I felt self conscious and wondered if the people walking by thought I was just using it because I was too lazy to carry my baby a few extra yards. Sort of like when I pull out our WIC coupons and imagine the people standing behind me in line saying: Lazy welfare mom should just get a job!

I've even rehearsed different replies to show them I'm a contributing member of society:

After waking up at seven and spoon feeding my son who can not yet feed himself due to his damaged brain I changed, dressed, and braced him and brought him to his first of two appointments for the day in between which I'm picking up some eggs, cheese, cereal, juice, and milk and after his next appointment I will trade places with my husband and either go to my tutoring job or graduate classes or both depending on the day and then I'll play in a late night hockey game after which I'll sit down at the computer and write a blog entry for my other job before waking up and starting the process again---would you still like to call me lazy or could it possibly be that we live in a world that, on its best days, believes in supporting people through challenging times.

I've never actually said anything like the poorly punctuated run-on sentence above but I've been practicing, so watch out oh-judgmental-person behind me in line.

OK so actually these imaginary conversations have more to do with my own recorded messages about food stamps and what it means to be poor then it does with the person buying bread behind me. They tell me I still have work to do. Endless, endless work to do.

But back to the handicapped permit. The weather changed, Elias grew heavier, and he accumulated more gear.

So by November, when we had a three week stretch where the temperatures never reached above the teens, if the handicapped spot was open, Elias and I parked there. And we parked there. And parked there.

And as I put the hat Elias yanked off while in his carseat back on his head and hoisted him out of the car--again and again and again-- I stopped noticing the people walk by. And when I did catch their eyes, more often then not, they smiled at my little boy in his goofy multi-striped hat.

The handicapped permit no longer hides in the glove compartment but hangs from my rear-view mirror. And though I will never use it without Elias because, ethically, I could not make that choice, I don't pull the blue permit down when he is not in the car.

The white stick figure, the one that sits instead of stands, no longer carries such shame.

Now I just need to empty my grocery cart.

It's 10:34 pm and I know where my bed is

Just submitted my last paper over the internet, a take-home final that was due before midnight. I'm turning the computer off now.

Have a wonderful weekend everyone.

Soon

Oh Elias, as soon as I finish my final papers, I promise to play with you for hours and stop bribing you with raisins so you'll stay in your chair a little longer. You wont need to throw them all on the ground to get my attention.

I'm close sweetie. Until then I am so proud of your curiosity that leads you to tear apart your room in search of something beyond words. And look at you, reading and riding all by yourself:

Such a big little boy.

And to ClubMom and my readers, I promise to write a more thoughtful post soon. In fact, I can't wait till communicating with this community is my only writing responsibility.

It'll be pure bliss, believe me.

My mom would tell me to get back to work or go to bed

Paper not finished.

Keep doing more research instead of writing.

Need to organize, clarify and and cut.

Due Thursday.

Will be back.

(Now if only I can harness that same brevity to tackle the subject of educational reform in Alaska for a paper that is intimately tied to my professional ambitions so I care too much about it to just write for a grade from a professor. Ugh.)

(By the way, Elias and Nick both have colds but I'm determined that my lack of sleep, poor eating habits, and the stale inside air from staring at a computer screen will sustain me. I'm ignoring the tickle in my throat.)

(What tickle?)

Bath Time and Bumbling

 

So after giving Elias a bath, book and bed, I wrote comments on my last three posts but I'm suppose to be working on a research paper which means I shouldnt even be on the internet but should have Microsoft Word open and my books and articles surrounding me so I can do the research as I write-- but the paper's not due tommorrow, so there is still time to collect more SHOULD's.

You got any you don't want?