3 AM

My watch says 3 AM.

But ER time is timeless time.

The lights always on full bore. The always ignored monitor alarms calling out their ceaseless beep beep beeyoups, making sleep near impossible in this place where it is so desperately needed by all.

The cots have thinned out by now, their former residents lost to beds upstairs or returned to the street beyond.

Thankfully tonight's more than full share of screamers and moaners, the deeply pained and the ecstatically crazed have been among the dispatched.

The one that really got to me: the man in the curtained berth next door, the B bed to my mother's A, groaning loudly, crying, begging for help with his pain, only to be summarily shushed by the nurses.

"Can you please keep it down?" one of them chided, like he was a wheedling child whining for a cookie.

I found myself fervently wishing his impacted gall stones could be magically transported into their bodies, see if a little empathy might suddenly develop.

I sit in my butt-numbing gray plastic chair snugged up to my mother's feet and watch her toss fitfully, sleep clasped but a few moments before being relinquished again to discomfort.

I have passed out twice, once sprawled, once slumped, keeping my less than perfect vigil as we wait for our number to come up.

Some of the staff here are familiar, faces I know from the last years of my father's life when he was a frequent flyer. We nod to each other as I walk my mother to the bathroom, one step oh so carefully placed in front of the next.

Others are new: fresh scrubbed interns, wearier residents; nurses in colorful scrubs with faces cheery or stern, your luck of the draw which you get. 

I miss my children. I miss my bed and the husband waiting in it, a single spoon, un-nestled.

I miss the Mommy who tucked me in at night and banished monsters for me. She has been replaced by this sweet, increasingly frail old woman - still beautiful with her nearly unlined face, her halo of soft white curls.

Her mind and memory are growing softer by the day, soft as her hands which used to cup my face to kiss my cheek, just the way I now kiss hers, tucking her in when we finally get settled into a room at 4:15 in the morning, nearly dawn.

"Goodnight, sleep tight, don't let the bedbugs bite..." I intone in the same singsong she once chimed to me, a thousand years ago in my pink bedroom.

"Where am I?" she asks once again, her voice quavering with exhaustion and slightly slurred from the painkillers that will allow her to finally sink into slumber.

"In the hospital, Mom. You fell, broke your rib."

She nods; reminded, remembers.

"I'm going home to get the boys ready for school, have a shower, an hour of sleep, and then I'll be back."

"What would I do without you?" she asks, patting my hand, grasping it, not quite yet willing to let go.

My mind jumps to all the lonely souls I'd witnessed in the ER tonight, suffering without an ally to stand by, bear comfort.

"I'm here" I say, "I'm here."

And then, eyes closed, breath languorous, her hand unfurls, releasing mine.

And I'm gone.

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Looking Down the Road at Hopeful Parents

I'm not here today, I'm over at:

where I'm talking about what I see when I look into my autistic son Jacob's future.

So come read me over at Hopeful Parents today as I contemplate Looking Down the Road

And it starts as a personal meditation and ends with a call to arms.

Because, people?

There are probably a dozen places scattered around the country right now that would be appropriate for Jake to live in as an adult, if he needs the kind of support I think he's going to need to lead a rich and rewarding, semi-independent life.

And there's going to be hundreds of THOUSANDS of autistic adults like him, that need those spots too.

Think about it.

And then do something about it, please. Take action!

Because it's about 10 years from plan to completion in these things; and we're about 10 years too late, already.

Also? I know today is the 11th and my usual posting day is the 10th. But I spent yesterday, the 10th, in the ER with my mother, once again. She had fallen and, it turns out, fractured a rib. 

And, as is usual in a busy city ER, we spent hours waiting for this test, then that one, the decision to admit, and finally a room... which she got into at 4 AM.

Yes, the fun never stops. Now I'mma gonna get an hour of shut-eye, then head back to the hospital.


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SNSS: Walking the Line

I don't know how to properly introduce today's SNSS guest blogger, to convey her awesomeness. She is Amy Hillis of the blog Transplanted Thoughts.  

Amy is an amazing mother and a wonderful, moving writer. She has also been through more tragedy than any other person I know, and somehow still finds life entertaining and amusing. 

What do I mean by tragedy? Amy has had seven children. Five of them are still living. The other two have been lost to the same rare genetic disorder that affects two out of her three still living younger children (the eldest two, from her first marriage, are now grown). 

When Amy began her blog, her youngest son David was sickly, but still alive, and those of us who read her followed along with his final days, filtered through Amy's anguished posts. He spent the last 5 months of his short life in the hospital, his mother by his side.

Theirs is obviously an intense environment, and yet Amy works hard to bring much balance and order, normalcy, joy and a sense of purpose into their lives. 

Read Amy's moving words, here, now, as she writes about the sometimes rocky relationship between Jacob, her unaffected son and his just-a-bit-younger brother, Jonathan, who is often ill:

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Walking the Line - by Amy Hillis

October 10th is a big day in our house.

It's the anniversary of my middle son's liver transplant. This year marks 6 years since he was given a second chance at life. Jonathan was born with a rare genetic liver disorder called citrullinemia. The only 'cure' - a liver transplant.

The road for Jonathan has been bumpy - speech delays, IEP's, hospitalizations and illnesses that 'normal' healthy kids would never have to deal with.

His older brother doesn't see the struggles that Jonathan has endured. Jacob only sees how much attention Jonathan receives.

Speech therapy, physical therapy, occupational therapy, home-care nurses, doctor's visits and time off of school.

And to rub it in a little bit more - cupcakes and celebrations on a day that's not his birthday or Christmas.

When the boys were smaller and Jonathan had to be hospitalized, Jacob would spend his time at Grandma's house. At first he loved going to Grandma's, but as he got older he began to see it as a punishment, as an unfair consequence of his little brother being sick again.

It was during this time that Jacob started to express a lot of anger towards his little brother. He would take toys away from him, hit him and yell in his face when he was unhappy about something Jonathan had done.

It was such a trying time on so many levels. Helping Jacob to not feel lost in the shuffle became just as important as getting Jonathan well again.

Simple things, like extra cuddle time, one-on one reading time or big boy 'perks' like being able to stay up later or having first choice on movie night. These things became part of our daily routine in an attempt to curb some of the anger and hostility that Jacob felt towards Jonathan.

As the boys have gotten older, balancing the needs of each has been like walking a tightrope. Each one crying "Unfair!" when they think the other is getting the lion's share of the attention.

Fortunately the further out Jonathan gets with his transplant, the less and less time we spend in the hospital, at doctor's appointments and with therapists. Outside of the everyday quarrels that 2 boys born not quite 2 years apart encounter, most of the perceived slights happen on days like October 10th.

A day I choose to celebrate even though at not quite 7, Jonathan doesn't comprehend why it's such a special day for him and for us. We celebrate because I want both boys to honor the life that was given and the life that was lost.

It opens up discussions on the season ahead. On being thankful for what we have and living our lives to the best of our abilities.

Jacob has worked through most of his anger towards his little brother. He is shouldering the responsibility of being the 'big' brother, the one who should take care of the younger boys, with great pride.

I see an empathetic young man emerging from the shell of the little boy who once cried "Unfair!" at being the one who stood in the shadow of his little brother.

I want to thank Varda for asking me to share a piece of our story for SNSS. Sometimes the ones left at home to carry on the every day have a harder job than the ones working through the illnesses and therapies.

Giving a voice to both can do amazing things.

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I am often amazed by Amy, how she carries on with life amidst the loss. She feels and acknowledges her sadness but isn't engulfed and destroyed by it, somehow manages to be there, fully present for her still living children who need their mother as much as ever.

What is most inspiring about her is her realness, and her willingness to share that with her readers. We see that she is some days sad and mad but also loving, humorous and even grateful.

Now that you have read Amy here, you are surely going to want to follow her home to her blog Transplanted Thoughts and read more of her family's story and her beautiful writing.

If you want to know about what happened to her first son with citrullinemia, who lived only 5 days as the doctors puzzled out what was wrong with him, read this post here: Introductions.

For an incredibly touching and sad moment when Amy's son talks with her about missing his baby brother David, and wants to make sure he is being looked after in heaven, read this one: Moon Talk (warning have hanky ready).

And then, because her tag line IS "Life's still funny" try this funny post about her sons' Sailor-speak (something I think all of us with boys will relate to).

Amy would also like it if you would come stalk her on Twitter, where she tweets as @transplantedx3 and on her Facebook Fan page, 

Thank you so much Amy, for bringing your beautiful words to SNSS today.


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Dream City

There is the San Francisco I inhabited in my early twenties and the San Francisco that inhabits my dreams; a simulacrum I have built in my head.

Dreamscape ‘Frisco resembles a paper shadowbox: rows of filigree cut Victorian houses marching down to the Pacific, pitch black against a red-orange sky; perpetually sunset.

A house I never lived in sits on a twisted version of my old Mission corner, Capp and 19th; frying beans and chopped cilantro from the local taqueria perfuming the air, as ever.

My dream house is gray on the outside, sketchy and unformed. But inside? A kaleidoscope puzzle box.

Sometimes there are many rooms, telescoping; sometimes few, claustrophobic.

A tinkly crystal chandelier hangs in an empty sunlit chamber whose high, 15-foot ceiling completes the space, squaring it.

A door opens once to a cerulean blue bathroom, oceanic in size and temperament. Closed, it opens next to a tiny closet, redolent of cedar and old newspapers.

There is an attic, sometimes; low, bare ribbed, and full of secrets.

And sometimes a 4th, 5th, even 6th floor, holding surprises: a pool table; a pool; a family of wise white cats, clearly descended from the one who lived with me once, those many years ago in the real San Francisco.

Golden eyed and mysterious, I had dreamed of her for a month before she found me at a gallery opening in Potrero Hill, yowlingly demanded I take her home.

My memories of California have now taken on fuzzy edges, those wavy lines you cross back and forth between what happened for sure, and what has become mythic in your many years of re-telling your story to yourself.

While my dream San Francisco remains crisp, flash frozen and locked in; revisited in a way the actual has not been for some spate of time.

And who is to say which is the more real?

The one I walk in memory, or in dream?

In both my feet are mere thoughts now, biochemical contrails wrought of firing neurons.  

When the fog descends on a twisty hill, and I chase a white cat through ghostly streets named for planets, does it matter if it is dream or memory?

Really, does it matter?

This post was written in response to a prompt from Write on Edge to paint the picture of a place (real or imaginary) in our mind, and then use words to paint it for our readers. So I chose a place that was both.


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I'm in Katie's Army now

I am thrilled to have been recruited by the wonderful Katie of the blog Sluiter Nation.

And all I had to do was write a blog post for her.

This one: Tribes

Now, if you know me and the gifts that ADD has bestowed in my life, you'll know this "little thing" had me tied up in knots all weekend.

I do guest posts. I love to guest. But I always get anxious when writing for others and not just myself.

And since anxiety makes me uncomfortable? I avoid and procrastinate. And then you add in my perfectionism, my being unable to just write and release?

That means I turn in my guest posts at the weee end of when they've been asked for, sliding in right under the wire. Sorry folks.

I always swear next time will be different.

But I wouldn't hold my breath if I were you.

I even wrote a post about it called "I Fear I Make a Terrible Guest."

So why do I keep subjecting myself to the stress?

Because I love communities, being connected to something larger than myself. Because the glue that holds the bloggosphere together is a combination of guest posting, commenting and linking (plus a healthy dose of Twitter and Facebook and other social media tools).

Being a part of something.

Which, coincidentally, is the theme I was asked to write on, and came up with this post for Katie:

Tribes

Which you should go read over at her blog.

And then you should stay and read Katie. She is wonderful. Generous. Funny. Genuine. The real deal. A mom. A writer. A friend.

I am so thankful to her for having me today.

Making connections.

(Go. Read. See you back here tomorrow.)


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Blink

Riding the subway with my sons, I look across to see a baby strapped to his mother’s chest, lovingly patting her face. (And then, not quite so lovingly, trying to stick his fingers up her nose.)

I smile.

Remember.

My two are slumped against me, one at each shoulder; snuggled, tired, happy. On our way home from a boisterous day at the Cloister’s medieval festival, swords and shields safely stowed in our pack.

I think the thought of all parents of older kids:

“How did THAT turn into THIS?”

Blink.

Whoosh.

The days creep.

There are a thousand tediums to the care and feeding of children.

Some days I think:

“If I have to cut and peel one more apple…”

“If I have to hear Sponge Bob laugh one more time…”

But the years zing by in a streaky blur.

Sometimes I feel the need to reach out with both hands and grab a moment, force it to hold still for the reveling.

But slippery fish time always jumps free.

And I am too often distracted.

When did my son stop needing my monster-banishing?

When did the other one start to read the cereal boxes?

Blink.

Blink and I’ve missed it.

Another moment.

String them together and you get a life.

How do I cherish each one, appreciate them as they whiz by?

(Without the unstringing.)

Pictures help.

Time frozen.

Moments available for memory, reverie.

But so does living, consciously, in these moments.

Being fully present. (Or trying.)

Try not to worry too much about what is being missed.

Reach out your hand.

Leave it open.

Watch a fluffy dandelion seed alight upon your fingertips.

Marvel at its beauty.

Until the next puffy breeze blows it further yon.

Place an arm around each of my sons.

Embarrass them thoroughly (well, the one who can be embarrassed) by pointing out the happy gurgling baby and remind them they were just like that once.

And me, the dreamy smiling mother.

Not so long ago.

And yet, a lifetime.

Theirs.

Strands of luminous moments I wear, like pearls around my neck, entwined through my heart.

Blink.

What you catch, what you miss.

It’s haphazard.

But that’s alright.

It’s life.

Theirs.

Mine.

Ours, together.

And, someday, (if I’ve done my job right) apart.

As they waft on the breeze.

Yon.

Blink.

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SNSS: Fragile Brothers, Strong Sister

My SNSS guest today, Bonnie, has a lot in common with the other Autism Moms whose posts have appeared here. But she also has much in common with a very different segment of the Special Needs parenting population, too.  

That is because not only are Bonnie's identical twin sons on the autism spectrum, but they also have a genetic condition: Fragile X Syndrome.

Bonnie writes all about life with her 6 year-old twins and their older sister in her blog, The Fragile X Files, with love, compassion and honesty. 

Her wonderful boys are especially challenging, with aggressive behaviors born of their deep anxieties, major sensory issues and tremendous struggles with communication and language. Her older daughter Aliza is an amazing girl, compassionate and caring with her brothers, a mini-therapist, a true friend. 

Come read as Bonnie beautifully shares her family, bound by fierce love and loyalty, with us here, today:

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Fragile Brothers, Strong Sister - by Bonnie

I have identical twin boys with Fragile X Syndrome and autism.  They are six years old.  Fragile X is the most common known genetic cause of autism.  They are adventurous, hyperactive, adorable, aggravating, sweet, affectionate, anxiety-ridden, and very special.

But this isn't about them.  It's about their 8-year-old sister, Aliza.

Aliza's sibling experience is quite a bit different from most of her friends'.  Her brothers don't play with her much.  They don't tease her or mess up her room.  They don't take her toys.

They do pinch and sometimes bite her.  They scream and demand to get their way and usually they get it, because they are louder and more stubborn than she is, and let's face it - there are two of them.

She sees the world quite a bit differently than most kids.  You know "Welcome to Holland?"  She knows Holland inside and out.  She knows what sensory processing disorder is.  She knows what an IEP is.  She knows the procedures for ABA (applied behavioral analysis).  She knows hyperactivity when she sees it.

Other little girls like to play "mommy" or "doctor" or "school" with their dolls and their friends.  Aliza plays "occupational therapist."

She's extremely perceptive.  Her brother Zack has a tendency to reach out to strangers in stores, and pinch their arms.  If he's within reach of someone, more than likely they will be a target.  Aliza knows this and when we are shopping, she'll discretely put herself between Zack and other shoppers.  She does this, knowing he might very well just pinch her.

I can't tell you how my heart bursts when I see her do this.  Without my even asking her to.  I'm so proud of her I could explode.

Sometimes they are a real drag on her good times.  We end up leaving parks and malls and parties early because her brothers can't tolerate crowded or loud places.  I have tried volunteering at her school a couple of times when I had to bring the boys along, but they screamed, and it embarrassed her.

I didn't plan for her to be the big sister of kids with special needs. But, planned or not, she's taken to that role pretty well.  She not only reaches out to her brothers to play with them the way they play, but she helps them to find their way in this not-always-accepting-of-differences kind of world.

Her dad and I, along with her grandparents, work hard to make sure she feels special too, and gets plenty of opportunities to live her life fully, despite the ways her brothers disabilities limit our family.  Whenever possible, we take two cars to every event and outing.  If the boys have to leave, one of us stays with Aliza.

We try to make sure she gets to have as normal a life as possible.

Even though some days it's anything but.

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Reading this post, I must admit to feeling no small part of envy for how sensitive and caretaking of her brothers Aliza is. I know that every family is unique and that an older sister and a twin brother are very different entities. 

But still, I only hope that some day Ethan can follow in her footsteps, that he will feel more empathy and less antipathy for his brother. 

Having read Bonnie here, you'll want to follow her home to her blog, The Fragile X Files, and have a good read.

You may want to start with this moving post about how in the world to answer people who ask "How are the Boys doing?"

Or try this beautiful tribute to Aliza and her sisterly skills, or this lovely post about taking care of her sons, a meditation on sensory brushing.

Also, you should go follow Bonnie on Twitter where she tweets as @FragileXFiles and come like her Facebook Fan Page, too.

Thank you so much, Bonnie, for this sharing of your lovely, special family with us today.


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