From the Mountaintop Archives

Preparing for Preschool

Elias crawls, wears diapers, and weighs only 24 pounds and my god I am terrified about throwing him into a preschool classroom with big fat strong kids who will sit on him and crush his skinny little limbs.

And I can't wait for him to start. Because Elias will love school.

Everyday he asks me to go on a car ride even when we have just walked into the house from his zillionth therapy appointment of the week. Car ride again bery bery soon. If I even mention LEAP or swimming or the library in conversation, say on the phone with a friend, he repeats the word and adds his own. Go nimming. Tuck ride to nimming. Nimming bery bery soon. Its not just the activities he craves but he loves spending time with people. And he's not at all shy.

(Don't let the fact that he doest maintain eye contact fool you. He may not be able to control his eyes to flirt but he will crawl up to you and gently rest his head against your leg--we call it a bonk and bonks are like kisses.)

On Saturday we celebrated the upcoming wedding of some friends of ours  by joining them for a potluck at Alpenglow, an almost completely volunteer run down-hill ski resort in Anchorage. Nick and I took turns socializing while the other person followed Elias around the chalet. While on Elias-duty a woman I didn't know approached me to tell me she thought he had a cherubic face and then she asked me how old he was. (You know, that question that is so simple to answer .)

Maybe it was the red wine in my hand. Or the warm< feelings in the room. Or her compassionate face. But I didn't give her the short answer. No, she got the whole two uteri - week 18 bedrest - emergency c-section at 25 weeks - heart and brain surgery before two pounds - 94 days in NICU - multiple eye surgeries - legally blind - Cerebral Palsy - Chronic Lung Disease -delayed growth - happiest kid on the block - and turning three on Friday answer.

Elias meanwhile has crawled to a table of people I do not know, pulled himself to standing by holding onto their legs, and is saying: Come here up. Come here up--meaning pick me up and put me on your lap and feed me your chocolate chip oatmeal cookies.

Like I said, he's not shy.

And as much as I once thought I wanted to keep my kids home as long as possible so that I could teach them everything because I would be the all-knowing all-creative super mom I've been humbled by parenthood.

I'm not the only teacher Elias needs. And frankly, sometimes I'm a pretty shitty teacher.

I'm not always consistent. Elias no playing with the stereo. Later that day: I pretend I don't see him playing with the stereo so that I have five more minutes to write or clean or cook or read or god help me just sit and breathe.

I let my mood affect my lesson plans. Lets play hide and seek. OK mama is hiding, see if you can find me? Oh, you found me. Alright I'm hiding again. Pull covers over face and stretch time in bed for a whole extra hour. Peek a boo! You can't find me...

And I grow bored and frustrated and impatient at times. Not the best qualities for an all-the-time educator. So two and a half hours, four days a week, I am willing to hand Elias's education over to trained professionals.

As long as I get to meet with them first and I am comfortable with his new environment, teachers, and therapists.

As long as I agree with the report from his assessment and am comfortable with his IEP. (We meet on Feb. 7th to discuss both.)

As long as they love him the best. And swear they will keep him safe from pudgy buttocks or die trying.

And as long as Elias continues to smile.

(Elias now calls taking pictures, "taking a (s)mile")

Why Sports Matter

He had a heart attack on the ice. And we didn't even know his last name.

It was only his second game with our team and when he fell and stayed down I thought it was his back. In the locker room he mentioned he was returning to hockey after taking some time off to heal.

But he wasn't moving.

Players from both teams instantly responded as I stood on the ice watching.

(I'm not good in medical emergencies. I freeze. And yes, the irony of having a child with complex medical issues is not lost on me.)

CPR

911

Someone searched through his clothes to find his wallet so we could tell the EMT's his full name.

More phone calls. Someone knew that his girlfriend or fiance was out of town in bush Alaska and called a roommate or friend.

The ambulance arrived.

The EMT's slid stretcher, defibrillator, oxygen, onto the ice. We all backed up, gathered in mixed jersey clumps, and waited.

We watched as they jump-started his heart. We breathed a little easier. They wheeled him out of the rink and the ambulance siren blared.

We all chose not to finish our game.

***************

A year later I'm meeting with a colleague and she tells me a friend of hers is scheduled to deliver later in the day. She tells me this friend had a difficult pregnancy, she's older and cracked some of her ribs playing hockey the year before which caused her a lot of pain as the baby grew.

I tell her I play hockey as well and so I may know her friends.

When she says their names at first I don't think I know them and then I realize who they are. I was there the night he had a heart attack I tell her.  She knows the story well.

She tells me her father had a heart attack in a restaurant.

And no one responded.

People sat at their tables afraid or unwilling to administer CPR.

Maybe everyone expected that someone else would respond. Maybe people thought it was none of their business. Maybe, like me, they all just freeze in emergency situations.

But her father's heart stopped for too long before help arrived and he never fully recovered.

********************

And this is the real reason why I continue to play sports. Its not just about the physical release, the mental break, or the joy of competition. It's because I don't have to know your last name, where you live, or what you do for work to feel connected.

I don't even have to talk to you outside of the rink or soccer field to know your character. It reveals itself between the blows of the whistle.

And whenever Nick and I have been in need--from bed-rest to baby to a backyard shed to move--our soccer and hockey teams have always responded.

Some people have church.

I have sports teams.
<

(Taken on Cape Cod after our pick-up family and friend hockey game, with three generations of Everett's playing.)

An Unedited Rant

"I'm sorry what did you just say?"

"Can you repeat the question?"

I can't count the number of times I said this to the school psychologist who interviewed Nick and I on Wednesday during Elias's assessment by the Anchorage School District for Special Needs Preschool. Yes. Preschool. That alone is enough to make me a little emotional but the assessment had me on the brink of tears. I can't fully explain why. Everyone we met was friendly. They smiled at Elias. But my god there was a lot of them. Occupational therapist, physical therapist, speech therapist, teacher for the visually impaired, and a special needs preschool teacher. Five new pairs of adult eyes evaluating my son as I sat at a different table answering questions from the school psych. and the nurse who came by briefly to clarify a few things. None of these folks had ever met us and they will not be the team that will work with Elias. They are the evaluators who develop and recommend Elias's individualized educational plan or IEP.

For almost two hours we answered questions as they asked Elias to sort, match, color, roll, slide, string, drink, eat...all sorts of tasks to determine his level of need. And this is the thing. I didn't have a chance to say anything to them first about what I saw as his needs. And I understand why. It is a standardized assessment. He may be in diapers but he is entering the world of public school. The world of evaluations and tests. And this is not even new for us. Elias has undergone all kinds of evaluations and tests since his days in the NICU. Beginning with an Apgar score of 0,0,3, he has constantly been assessed. But you see I am his mother and as much as I understand the "why" behind the process it was downright painful to watch strangers watch my son with their pens and pencils scribbling away. Their brows furrowed for a moment. Their misinterpretation of his words or gestures. "Oh, your all done with this toy." No he just needs to turn it around to touch every side to see what happens if he puts it upside down even if its not suppose to work that way. And even though these highly qualified professionals soon figured this out I could not spit the words out first because I was engaged in my own interview process simultaneously though Elias sat only a few feet from my lap from my arms that wanted to scoop him up and run away and I might have if there weren't two familiar faces in the room. Mae Ann our speech therapist and Andrea our vision educator who came to be our advocates, who will no longer be working with Elias now that he is turning three. Three. Three. My baby boy is almost three. And my god I know that I won't be able to speak for him forever. I know that all of his life he will be evaluated by people that do not know how gosh darn precious his is and it doesn't matter if your child is trying out for the Olympics or for special needs preschool it hurts to watch others judge your baby.

Whew. I needed that little rant. And I could go on and on about how much I'll miss Mae Ann and Andrea, about why we are going through this process, about how Elias thought the whole thing was just a ton of fun and talked about it the rest of the day but I have a hockey game in half an hour. And after this week I need nothing more than a hard skate where I think about nothing but catching that silly puck. And yes, I feel much better. Thank you. 

Heaving Sighs

For the past two days Elias has  received first hand proof that everyone throws up sometimes.

Well, at least that Mommy does.

The first time I ever threw up in front of him he laughed at his silly Mama shouting at the toilet. This time I made him cry. Strapped in his booster chair with his back to the bathroom door he couldn't see what was happening. So between heaves I found myself saying, "Its ok sweetie Mommy is just throwing up."  More scary sounds. More tears. "Remember how we talked about how everyone throws up sometimes."

I'm not sure which is worse being home with a sick kid or being home sick with a kid who does not understand.

The bright side is that now I know for sure that he wasn't sick due to increased cerebral pressure and I can stop "what if-ing." I can also stop feeling guilty for not tasting the chain restaurant's milk before giving it to him and am relieved that I didn't publicly point a finger at the place.

The down side is I still feel sort of like this :

(Just flip me over and put me on the couch)

Receiving the Comfort You Offer

"Everyone throws up sometimes. Mommy throws up. Daddy throws up..."

"Nana throws up," Elias adds to our list, "Papa throws up..."

"Yep and Grandma throws up. Pop throws up."

"Mary throws up...."

Usually we list our friends and family while cuddling in the rocking chair as part of our bedtime ritual: Night Night David. Night Night Audrey. Night Night Tess...

But not on this rockin' Saturday night that involved cleaning the kitchen floor, bathroom, Elias's crib and Elias after he drank milk from a chain restaurant I will not name but we believe is the culprit for his curdled belly. Instead of our comfortable chair at a reasonable hour I sat on the floor outside the bathroom, with Elias on my lap wearing only a hot pink towel after his emergency midnight bath, listing everyone we know who throws up too.

When he added names to the list, repeating his favorites--Mama throws up, Dada throws up-- I knew we were OK. Elias was just sick.

Kids get sick.

Kids throw up and it doesn't mean that spinal fluid is again being trapped in the ventricles of their brain. Throw up by itself is not usually life -threatening. But this is what happens to a mother's brain when she knows that one of the signs of increased cerebral pressure is regurgitated dinner:

He's OK. He's not OK. He's so pale. He's shaking. Should we bring him to the hospital? We need to call 911 now. No we don't. He's OK. We can handle this. He's just sick. But what if he's not just sick. What if we lose him. I can't handle this. Yes I can. Just hold him and tell him everything is going to be OK. But what if its not? What if...

This all flashes past in a matter of seconds while husband and child believe you are completely in control. And you are. Its just that your mind travels down those dead-end streets. Just in case. Call it preparatory grief or NICU flashbacks or just plain ol' parenthood but regardless of the name the dread is fleeting and does not stay for the night.

Sometime after midnight, Elias squirms from my lap and tells me he wants to crawl.

He's fine.

Truly.

And I wonder who really needed to hear that everyone throws up, him or me?

Found writing:

"Do I begin with a yearning, a desire for more than myself, or do I begin with the eruption, or the arising, the arrival of my son Elias. My life shift on February 2nd, 2004. Never to be the same. Why? There is never a day I won't worry about the safety of my son. His health, his heart, his innocence, his body, his mind, his angelic soul, I want all of it intact forever-The dryer buzzes. Jack Johnson sings on our stereo and my husband Nick works outside in the shed building dreams out of cedar and plywood. Elias sleeps and I sit and try to follow my thoughts that fly faster than light faster than this roller pen can ride..."

The handwriting grows larger, looser, and harder to read.

Not sure when I wrote it.

And a picture from long ago:

The Day After

I need to read all your comments four or five times each so the kind words seep in and saturate the shadows.

Those dark places that feel unlovable. That no amount of dark chocolate can fill.

(Believe me, I've tried.)

Just writing about my demons helps-- as if shaping my feelings into words makes them less scary. Less looming and large. Leaving more room for laughter and kisses.

My birthday started with the sight of orange and yellow tulips, fresh sliced strawberries and the smell of cinnamon rolls baking in the oven. Nick coached Elias to say, "Happy Birthday Mama!" and then cooked us both cheesy eggs for breakfast before leaving for work.

Elias and I attended his one hour special needs play group (LEAP) during which he resisted circle time and sensory play, stole toys from Keiten and Holland's hands, and chose apple over cheese even though he wanted to eat cheese and not apple during snack time.

Typical toddler behavior. (I couldn't be more proud.)

After LEAP we drove to the Dimond Athletic Center for swim therapy and practiced walking in the water, pushing off the walls with our feet, and blowing bubbles.

We've been trying to teach Elias to blow bubbles for almost a year now and he blew his first true bubble on my birthday.  The perfect gift.

After lunch we walked in the woods with Ginna and her dog Lebo, a Lab-Rottweiler-Sheppard  mix, tall and muscular, with a curly tail who likes to lick faces. To give luscious dog kisses.

"No Lebo, gross!" Gina scolded when he sniffed something in the snow out of my sight.

Elias cracked up.

"Gross Yabo!!! Gross!!!!" He repeated, giggling more and more each time,  laughing so freely that I couldn't imagine anything sillier than the word gross.

Or anything more heart-breakingly beautiful than the boy on my back.

Melancholy: A Feeling of Thoughtful Sadness

What if age wasn't a factor? If we didn't celebrate (or mourn) birthdays, mark calendars, or pay attention to clocks? What if we just followed the sun and the seasons and didn't keep track of the weeks, months, and years in-between?

What if we stopped asking, "How old are you?" and instead asked,"Who are you? What do you like? What makes you laugh? What are your dreams?"

I'll be 34 on Tuesday and in about two weeks Elias turns three. But what if I didn't know this so I couldn't compare our accomplishments to others of the same age? Couldn't despair that we seem to be falling farther and farther behind. At least in the pecking order of milestones as related to years lived.

I know far less than I once did. And underneath my bravado I feel less capable.

Something shifted the day Elias arrived four months premature. My body failed me. And I failed my son.

It doesn't matter how strong or influential the intellectual argument against this sense of inadequacy is because my feelings aren't reasonable. Its a strange mix, this brew of strength and impotency, that ferments in my psyche. On the one hand I feel like I can survive anything now and on the other I can't even complete small tasks like returning emails, cooking dinner, or organizing my desk.

Sometimes my balance matches my son's.

Yesterday I lay on the couch unable to do anything but read an article in O Magazine about couples who fall in love despite a wide age gap. I'm five years older than Nick so though the story focused on people with a generation between them, it piqued my interest when nothing else in my life did.

"What would you like to do?" Nick asked me as I sat staring into space.

"Nothing," I replied.

Nick went outside to put distance between him and my nothingness. I finished the article and lay looking at all the projects I could do while Elias napped.

Its hard being a grown up.

After three weeks in my parents house, I want to be a child again with dinners cooked by Mom and evening fires stacked and lit by my Dad.

I want to be that kid who believed I could do anything if I tried hard enough.

Not the woman who doesn't trust herself to carry something through. Full term.

On January 16th, 1973, the shopping mall across from the Waterbury Hospital burned to the ground. And my mom delivered me, her second child and first daughter, into the world.

Ashes on one side of the street and birth on the other.

I can't go back in time through the months and years that have turned me into the woman who sits here drinking red wine trying to make sense of intangibles.

All I can do is be honest about who I have become, forgive all the inconsistencies, and love deeply despite it all.

The Evolution of the Cheesy Grin Influenced by Holiday Paparazzi

From Cape Cod to Alaska and still on Swings

Exhausted but home in snow-covered Anchorage. (Three feet since we left!)

Elias cleaned Concourse L of the Chicago airport with his hands and knees during our four hour layover and then slept for almost all of the seven hour flight home.

"These floors are filthy," a woman pronounced, as if I didn't notice.

The other toddlers ran to get their wiggles out. Elias crawled.

And I'm sorry but after scrubbing my arms from finger tip to elbow for two minutes in order to rest my hands on Elias's tiny head, after taping a sign on our front door asking guests to please wash their hands when they arrive, after avoiding all crowds from day cares to shopping centers to birthday parties, I know about protecting my child from germs.

I've been there.

And now, quite frankly, I don't care if his hands get dirty as he revels in his exploration of the airport, crawling under seats (tunnel!!!) and making weary travelers smile.

"These floors are filthy!" This is not one of the Mother at the Swings (as Vicki Forman dubbed them), prompted to speak from a place of curiosity and compassion. I don't have a catchy name for her yet but she is the same one who said to me at a  conference as Elias scooted past her feet, "Aren't your worried that he's not going to read if he doesn't crawl?" Or the one who stood behind me in Costco and said in a snotty tone, "What's wrong with your child's eyes?" These are one-ups-women who feel better when they are putting someone else down, even if the insult is veiled by mock interest or courtesy.

You know who I mean, these women are born in junior high and become more cunning with age.

And sometimes the well-intentioned commenters, the "Mothers at the Swings", get rebuked by us special needs mothers because we've had one too many encounters with the likes of these, for lack of a better term, One-Ups Mothers.

That Girl commented on my last post that sometimes people's innocent comments make her not want to go out. I can relate. If I hear one more person say to me-- "Oh don't worry he'll walk soon, they all do."--I may avoid conversations with  people all together because the fact is not everyone walks and if over twenty doctors, therapists, and specialists can't make predictions then I don't think someone can in the time it takes an elevator to reach the fifth floor.

That Girl writes:

It's probably the only thing they can think to say but the disconnect "He has     half a heart" "Dont worry, he'll get bigger" makes me want to stay home           forever. Alas, Jake adores the park swings.What do you say to yourself when people make these kind of remarks about Elias? And how should our response change as they get old enough to understand these stranger-conversations?

I've gotten very good at smiling while fuming on the inside. Some days these eternal optimists are easier to shrug off than others. As Kyla writes in her comment: "Blind positivity can be like a slap in the face..." Some days, I want to shout back: "And what if he doesn't walk, what then? Will you still accept us if we don't fit into your picture of what is OK?"

For me the hurt is twofold: the comment can disregard our reality--all the therapy and medical appointments, the fears and worries--that makes our parenting different from theirs and it can imply that this difference, in the long term, is not acceptable.

And yet I know that this is never the intention when someone says, "He's going to be just fine."  They just want to make things better. They want to protect us and our children, and subconsciously, they want to protect themselves. It's down right hard to see children struggle, hard to realize that babies get hurt, hard to accept that we aren't all the same.

(And yes, there are times when I want and need to hear that, "He's going to be just fine" but from people who know his history, his strengths, his personality and in their words "fine" includes all of what makes him uniquely Elias.)

Despite the unanticipated sting of strangers words we can't hide in our houses. Can't avoid the swings. As Kyla writes at the end of her comment:

The best way to help people understand is to be out there at the swings      educating them by your presence. Maybe if there are enough of us out there at the swings, we can help those Mothers at the Swings to catch a glimpse of what makes our kids different, and that it is okay to be different. Maybe then they won't need to pretend that "He'll get bigger." or "She'll talk soon!" or "He'll be   walking in no time and then you'll wish he wasn't!". If we aren't out there         helping them understand, they never will.

I'm glad to be a part of this conversation and I think it needs to continue. We need to talk about the hurt of innocent words and the human need for happy endings.

And that sometimes those happy endings include a small blind prince, with half a heart, who still crawls and a smart nonverbal princess who can not stand but talks beautifully with her hands.

It may seem impossible but somehow it all works.