Thursday, March 31, 2011

A frustration sandwich

7:30 p.m.: My husband and I start the bedtime CD and put our twins in their new separate cribs. For the past couple weeks, when we have finished the bedtime routine (solid food, bath, bottle, story, CD, lights out) the boys have gone to sleep without crying at all: The Holy Grail of Parenthood. But tonight something is different. Malachi is not happy.

7:37 p.m.: Malachi is still crying loudly and as this is very unusual, Matt goes to check on him. He sings and rocks him, but Malachi continues to cry and arches his back in his arms. Matt decides there's nothing to do but put him back in the crib and let him cry it out.

7:40 p.m.: Nerves frayed and CIO willpower weakened over weeks of (relatively) tear-free sleep times, Matt goes to check on him again. He concludes that Malachi is simply not tired and brings him out to me.

7:41 p.m.: I know better. I sing and rock him until he is calm. I lay him down at the very edge of his crib, his head and feet touching the long sides. Before he can get too upset, I grab his brother who is groggily awake after all the commotion and set him down in his old place at the other end.

7:45 p.m.: Malachi, seeing his brother in his rightful place, coos his approval. My heart melts at the first real sign that he recognizes and loves his brother. They both drift to sleep peacefully, safely in sight of each other.

Jaden and Malachi find themselves at the center of their crib every night even though Matt and I put them down on opposite ends. And yes, I realize this looks like a SIDS "what not to do" poster, but they won't sleep any other way.

...10:12 p.m.: Jaden screams awake because in his dreams he has managed to travel to the other side of the crib, flip himself over and is ramming his head repeatedly into Malachi's, which is, of course, precisely why we got him his own crib in the first place.

And thus parenting. A frustration sandwich with a heart-meltingly gooey center of utter adorableness.

Monday, March 28, 2011

Dear Person at the Grocery Store

Dear Person at the Grocery Store,

Yes, they are twins. We did not hit a baby B.O.G.O sale; the hospital did not throw in another one as we walked out the door; nor did we cosmetically alter someone else's baby to look exactly like ours and then tote him around in a double stroller pretending like we have twins only to be foiled by your cunning line of questioning.

Yes, they are a lot of work. Please stop using the expression "double trouble."

No, they are not a boy and a girl. I don't know why you think twins only come in this option, but I'm glad you understand statistics.

Yes, God is playing a practical joke on me, but it's still not polite to giggle as I walk by or when you suddenly realize the person standing next to you has two babies.

No, my babies don't have socks on. There are several reasons for this, the most important of which is that one of my babies has brain damage and needs all the sensory input he can get while his brain is trying to figure out what's going on. The second most important reason is that baby socks are scientifically engineered to fall off. You are welcome to spend your entire day wrestling four tiny wriggling feet into the negligible warmth of flimsy socks, but don't expect me to.

No, I don't really care that someone you know is a twin or that your mother's cousin's neighbor just had a baby. However, yes, guy at Wal-mart, I do want to hear all about your cousin who raised three babies using an irrigation ditch instead of diapers.

And finally, yes, they are very cute. And, yes, their smiles are adorable. Thank you.

Sunday, March 20, 2011

Diagnosis Day: Shattered expectations

I always enjoyed the first class of the term. I would sit there — be it in a class of 15 or 200 — and look at the teacher with a clean slate. This teacher didn’t yet know me from any of the other students in the class. This teacher couldn’t yet tell that I would be one of his or her best students.

It’s arrogant to say that, I know, but that doesn’t make it untrue. I graduated from college with higher than a 4.0 GPA, receiving an “A” and often an "A+" in every single lettered class I took, from Physics of Energy to Economics to Russian to Photojournalism.

An “A” means “exceeds expectations.” That’s what I do. I exceed expectations in just about any project I set my mind to.

So when it came to the biggest project of my life — having children — I went at it with the same gusto I applied to other projects. I read books upon books, I researched, I analyzed it from all angles, I imposed diet and exercise regimens, I avoided potential toxins, I did everything right. Everything.

After the devastating news that our twins would likely be very premature, I began to apply myself to that scenario. I don’t think it would be too much of a stretch to say I devoted myself every day to keeping them from being premature. I quit work, I did everything books and doctors told me, I stayed hypervigilant to signs in my body that might indicate early labor. When I felt those signs, I went to the hospital and lived there (under awful conditions) for two weeks.

When I finally gave birth and everything was supposed to be fine but wasn’t fine, I then devoted the next eight months to learning about cerebral palsy and researching and implementing therapies, ranging from physical therapy to CranioSacral Therapy to homeopathy. My baby was given a vague prognosis of mild-to-moderate cerebral palsy and goddamnit, it was going to be mild. Because that’s what I do. If there is a range of outcomes, I work my ass off to get the best one.

So when diagnosis day came last Wednesday, and the doctor said “medium,” which I translated to “moderate,” I was devastated. It didn’t help that his attitude was that there was nothing to be done about it — either Malachi will end up having moderate CP or he won’t and the team of therapists will start working to help him adapt once he gets older and we know what we’re dealing with.

So, I said: “It just seems like you’re waiting for his brain to fail to make connections before you do anything about it.”

He sort of laughed and said: “What do you want to do about it?”

I should have looked directly into his grey eyes and said:

“Everything. I want you do to everything about it.

“I want you.

“To fucking.

“Fix it.”

You should know, by the way, that this man is supposedly the top cerebral palsy expert at a nationally renown children’s hospital. You should also know that he, like the developmental pediatrician we had before him, didn’t say anything that wasn’t a direct and limited response to a question from us. He didn’t even say it was cerebral palsy until we asked why we didn’t have a diagnosis yet. Even then he just said: “You have one.”

There was no sitting down and explaining the results of his evaluation, no tailored plan of action, no offers to call him if we had any more questions. At one point, in response to one of our fumbled questions, he said something like: “A lot of what I’m seeing here is extrapyramidal.”

I searched my recall for that term. “That… I think, if I remember from my reading, that means… involuntary movement?”

“That’s right,” he said, surprised, but didn’t elaborate.

When I got home and looked up the term, I found there were three different kinds of involuntary movement — he didn’t say which he saw — and that half of cases also have pyramidal or spastic CP and that this was a rare type of cerebral palsy, affecting about 10 percent of patients.

This threw me. We finally had an explanation for why Malachi didn’t display some of the more typical signs of CP (like tight, curled hands) and it wasn’t — as I had hoped — because he was doing better than other children. This meant all of the work and research we had done under the assumption that it was spastic CP would need to be reevaluated. A whole new chasm yawned before us.

After pressing from me to classify how many of Malachi’s limbs were affected — whether he was diplegic (usually affecting the legs) or hemiplegic (affecting one side of the body) — the doctor said he was “quad.” As in, quadriplegia. As in, affecting all four limbs. As in, my son is a quadriplegic.

I took a deep breath and said: “That’s what we thought, but when we look that up it seems so much more severe than what he has.”

“Well, you have to be careful there, because they’re talking about spastic quadriplegia and that’s a whole different kettle of fish.”

A whole different kettle of fish.

Was he taking this seriously at all?

I went home alone with my two babies, my head spinning. My mind was filled with images of “crazy” people — “retards” — who flailed their arms, slurred their speech and childishly demanded things. Oh God, is that going to be him? 

It didn’t help that last week my husband told me a statistic that 52 percent of children with CP are mentally retarded. Fifty-two percent. And that doesn’t count your run-of-the-mill learning disabilities.

For some reason, I never seriously considered this possibility. To me, the worst-case scenario was that he would be in a wheelchair, and I had come to accept that. But the idea that he wouldn’t be The Smartest Kid With CP Ever had never really occurred to me.

I think it was because when the doctors first discovered the brain damage, they were always quick to say that many people with CP become doctors and lawyers. In a sea of things they wouldn’t or couldn’t tell me, I had lashed my boat to their seeming confidence that Malachi would be OK mentally.

Now, my expectations were shattered once again. Malachi’s passivity in the face of toys evaluators swung above his head or Jaden’s sudden interest in the cat, which Malachi doesn’t share, were now certain signs that he wasn’t all there. (The CP expert said he would peg Malachi at about a two-month cognitive delay, though he said it was hard to tell if that was because of his motor control issues.)

Hot tears streaming down my face, I looked down at my baby, flailing awkwardly on the floor of the nursery next to his brother who was flailing slightly less awkwardly. They had no idea that I was sad. Their worlds hadn’t changed even the slightest bit since some dude had said the words "medium," "quad," and "extrapyramidal."

I looked at Malachi in his beautiful big blue eyes and he smiled. So I said, in my best impression of Happy Days' The Fonze: “A!”

Judging by his reaction, this was, bar none, hands down, the funniest thing he had ever heard.

I stuck my thumbs out and did it again: “A!” More throaty, high-pitched baby laughter. “A! A!” I said several more times to my captivated audience.

I was laughing and sobbing and laughing. They were just laughing. I dried my eyes with a cloth diaper and put them down for a nap. I cried a few more times over the next few days, but I know now that, come what may, there will be laughter. There may not be two walking babies, there may not be trips to the grocery store without rude stares and there may not be two college educations, but at least there will be laughter and that’s OK with me.

I suppose, after a year of practice at failing to exceed expectations, I’m getting better at it.

Tuesday, March 15, 2011

Sometimes, I forget my son isn’t normal

Malachi tries out the mad scientist look.
I'm sure he'll kill me later for sharing this.

Every once in a while, it will happen.

I don’t notice it when it happens, but I notice when it’s over.

The “it” I’m talking about is when I feel normal, when my unconscious expectations for the future and for my children slip into normalcy. I see Malachi’s smile, I watch Jaden chew on things and I feel happy and hopeful. I know that Malachi is disabled, but through the passage of time and the discovery of a large blogging community of parents of kids with disabilities, it’s become normal. 

Unfortunately, then my brain loops around and equates the normal feeling I have to thinking that Malachi will be normal, that his CP will somehow not manifest, that he will not struggle to accomplish things the rest of us take for granted.

I am jolted back to reality by the Fred Meyer bakery worker who gushes that her 5-month-old granddaughter is already sitting unassisted, or the cashier who teasingly warns me that they will be crawling all over each other soon.

My smile falters. I wonder if they notice. I fantasize about retorting that MY SON HAS A BRAIN INJURY, YOU BASTARDS, so that I can stab them back using the same knife they cut me with. But they look so pleased with their assumption that my life is normal that I can’t bear to shatter their expectations.

It isn’t and it never will be. It will be our type of normal, but it won’t be society’s normal.

In the brain disorder community, “normal” children are referred to as “neuro-typical.” I like the way this sounds. The “typical” part seems to imply a broader range of acceptable ways of being.

But at the same time, I don’t think that “normal” is a dirty word.

If I say I want my son to be “normal,” I say it for his sake, so he can walk without enormous struggle and do a million other things that the rest of us take for granted. And yes, I say it for my sake, that I don’t have to fight with his little body that tenses violently when he is upset, or spend hours (and thousands) on appointments and therapy sessions.

My mom is fond of saying that “‘normal’ is a setting on the washing machine.” That is, no person is normal.

In fact, since my son was diagnosed, I began to realize how normalized society has become. Just about every person I know has had to have orthodontic braces or glasses or other previously unavailable medical interventions in order to conform to society's normal. Much fewer are the number of people today permanently affected by degenerative diseases, such as polio, and risky scenarios, such as premature birth.

One would expect that this would make people less accepting of difference when they encounter it. But I have hope that through mainstreaming and a broadening exposure to people with disabilities — what with shows like “Little People, Big World” and blogs like this one — that most people will be able to see past Malachi's abnormalities. That, while aspects of him will be abnormal, people will still be able to relate to the aspects of him that are normal.

And in that way, he will be normally abnormal, just like the rest of us. 

Tuesday, March 08, 2011

Jaden, the Superbaby

This week, Jaden has learned to roll over at will, grab objects above his head and say "ma ma ma ma." While those without children might think this is no big deal, considering it wasn't so long ago that his most significant "movements" happened in his pants, his progress seems remarkable to me.

It boggles my mind to think about the next six months, during which he will rapidly acquire the skills necessary to crawl and then — dear God — walk to any object in the world, reach out, grab it and (given his behavior to date) shove it in his mouth.

As I watch him rapidly build on the skills he learned just yesterday, it makes me feel like Jaden is a Superbaby who is developing at the alarming rate usually reserved for time-release photography. In comparison, Malachi's developmental pace seems much more measured, predictable and, well, normal.

Malachi has been manipulating objects with ham-handed fists for a few months and is only now using his fingers to explore and grab things. Malachi has rolled onto his side a few times, but quickly pops back to his back in surprise. At mealtimes, Malachi just yesterday succeeded in pinching a spoon with a tense crane hand and inelegantly maneuvering it to his mouth.

Jaden, meanwhile, grabs the spoon forcefully and shoves it in and out of his mouth several dozen times each mealtime as if to say: "Really. I got this. Just gimme the strained peas and go about your business."

In accounts I've read of other parents of children with CP, they tell of the shock of meeting other children of the same age at a playdate or daycare. Sometimes it is only then that they realize how delayed their child is and that something might be seriously wrong.

As a parent of twins, I get this shock every day. Every day Jaden learns how to do something that Malachi can't do. Every day I mourn for the little boy getting left behind.

As Jaden races ahead, blurring past milestone after milestone, cheers for his accomplishments will always be accompanied by the deafening silence of Malachi's un-accomplishments. And when Malachi does finally reach those milestones, the accompanying fanfare will be out of proportion to what Jaden received for the same accomplishment. Because, after all, we know that Jaden will have his first steps; not even the experts can tell us if Malachi ever will.

None of that is fair. It's not fair that Jaden will have a higher set of standards, that his brother will get praise for seemingly easy feats, that everyone will be giving Malachi so much more attention and help. It isn't fair that my children's basic accomplishments will be so staggered. It isn't fair for a twin to have a twin with CP.

No, it isn't easy to be a Superbaby.

Wednesday, March 02, 2011

It's not funny anymore

The kids were finally asleep. I cut the wrap from our new $5 copy of Semi-Pro and snuggled up with my husband to relax on the couch like we used to, before kids.

The opening scenes roll through and we laugh at Will Ferrell's cheesy '70s-retro basketball persona. The line-up on his losing basketball team is announced:

"From South Bend Indiana...Bee Bee Ellis!"
"This guy has a heart of gold," says one announcer.
"His brother's a retard," adds the other conversationally. Matt and I laugh, then cut ourselves short.
"He reads to him and paints him pretty pictures..." he continues. We sit in uncomfortable silence. That could be our son, we're both thinking.
The line up roll continues: "Scootsie Doubleday! Scootsie Doubleday taking the court now."
The announcer comes back for the unexpected punch line:
"Yeah, his brother is really retarded..." Not funny.
"Ronnie Doubleday!"
"... he has all three major kinds of retardation." Very not funny.

It used to be. It used to be really funny. That was before we had a son with a brain injury.

Retarded is a funny-sounding word. It has punch, with those three hard syllables. It feels good to say when you draw them out: "That's re-TARD-ed."

Like "gay," the word has come to mean stupid in popular slang. How do these things get started? Why are they so hard to eradicate? You can use the R-word Counter, powered by the Special Olympics, to see how often the word comes up all over the Internet. Ellen Seidman of Love That Max, recently followed Twitter posts that included #retard and came up with thousands of instances in just a few days.

What she didn't know, what I didn't know, what my husband didn't know before we had kids with brain injuries is that being intellectually disabled is not funny and using the r-word is really hurtful. A mom with a child with CP and a child with Down's syndrome who blogs at Double Dose of Special compares it to the n-word that is now (nearly) universally considered derogatory and hurtful.

"... the bottom line is that the r-word is never used to describe something or someone in a positive way. Ret-rd(ed) is never a compliment." (See the full post here.)

So in honor of today, March 2, 2011, which is Spread the Word to End the Word Day, I took the pledge:

I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

You can, too.


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