Decennium

What a long, strange trip it's been.

Will turns 10 years old today. My baby is 10. A decade old.

Where did the time go?

By the way, that is a completely facetious question. I know exactly where the damn time went. Trust me.

Will is soaking up all the attention and fuss he's getting today -- which he loves, being the only child/hambone that he is. His birthday is nothing more to him than a celebration of, well, him. For that, I am thankful. So thankful. It should all be tinged in happy, light and joyous moments. Just for him.

This day. His birthday.

Let me tote around the shades of gray it holds. That's my job as his mama.

Perhaps because this marking of his birth falls on a significant number is why I'm brooding. I came to a semi-deep sense of peace with everything just a little bit ago -- but because it's been 10 years since Will came rushing into our lives frighteningly early, I think I'm looking at it more than just a happy holiday.

Parents' lives are changed the day their child is born -- how can they not be? The world as they knew it instantly becomes a different place.

My life was changed in ways I could not even fathom the day Will was born. An entire trimester early. A weight of one pound, 10 ounces. Thirteen inches long. With a questionable mortality rate and precarious health.

I walked out of my office on a Friday afternoon. Less than 24 hours later I was hanging upside down trying not to give birth, numb with morphine, still full of fear and uncertainty.

What a long, strange trip it's been.

As I look at Will today, with his shaggy hair and gap-toothed smile, picking up a basketball with two hands, one of which is hampered with cerebral palsy, I had to stop and catch my breath.

He is amazing. To me, anyway. All things considered.

Been rather introspective the past couple of days, thinking about all the events that led up to Will's abrupt birth -- I suppose that's natural with a milestone like 10 years. While the nuances have faded a bit from memory, there is still so much about that time that is vivid in my mind's eye. But at last it's not overlaid with guilt and angst. For that, I am grateful.

There is so much I've learned in the past decade -- about parenting, children, human nature, medicine, insurance, education, therapy, myself. I've become even more opinionated (if that's possible), patient, open-minded, resourceful, protective and caring. I'm in no way an extraordinary person -- and I still reel with uncomfortable self-awareness if someone, in a well-meaning attempt to try and convey some sense of appreciation, deems me so. I'm simply a mama, playing that parenting card God dealt me.

And speaking of God... I'm still toting around some anger where He's concerned -- at how life is playing out for my boy. It's not easy. So many challenges. Uncertainties. Compromised health issues. Developmental delays. The fact that nothing comes really simply or easily for him. Still don't get it. But have come to peace that I won't get it. Not like I want to. So I move on.

I've coined a phrase (at least I think it's original) that I whip out when people use the term "normal" when comparing Will to other kiddos -- I prefer to think of those guys as "standard issue." Some wise person said that normal's just a setting on a washing machine. Because in addition to his crazy health issues and delays and stuff, young William is just a 10 year old boy. With a wicked sense of humor, a passion for music that grows daily and a love of learning. He likes baseball and game shows and playing outside. His favorite people in the whole world are his daddy and his nana. And he loves going to church like it's his job.

I'd like to think that our little family is helping the cause for special needs kids and their parents by de-mystifying what kids with disabilities look like. Psssst... in case you were wondering, you can't catch cerebral palsy or developmental delays -- pass it on. And I'd much rather you ask questions about Will's condition than stare or point or, yes, refer to him by any number of outdated and currently offensive terms. Believe me, I've heard and seen it all over the years.

I'd be lying if I said I didn't get pings of jealousy when seeing pictures of standard issue families doing standard issue things that just are out of the realm of what our family can handle. I tell myself that it's part of being human. We've lost friends because of our circumstances -- and I understand that, since we don't run in standard issue kid circles. Still kinda hurts though. It's tough because the Mister travels for work during the week so our time, both together and apart, is precious. And tough, to be honest. The isolation can get a little exhausting.

Told you I was in an introspective mood.

OK. Enough of the emotional download.

Anyhoo.

It's a day to celebrate All Things Will. He is a loud miracle on two legs who wakes up talking and doesn't stop until his head hits the bed (he's not fond of pillows). Opinionated. Funny. Bright. Mischievous. My biggest challenge. My greatest blessing. Now and always.

Over the last decade we've cried more tears, laughed more laughs, sung more songs, seen more doctors, giggled more giggles, watched more Disney Channel and healed more hurts than I ever thought imaginable. Would I change anything? Only for Will. To make his life easier and more predictable. I'm just parenting. 'Tis what it 'tis.

What a long, strange trip it's been.

And I'm the better woman for it.

Happy birthday, my prince.

Soul Food

A chicken salad sandwich on wheat. Lettuce and tomato. With a side of salt and vinegar potato chips.

Iconic meal in my life. It was my go-to late night dinner in college. I often had late lab/writing classes in the journalism school and only after they let out would I have time to grab a bite. Usually at my favorite watering hole, where I’d pull up a stool at the bar, completely disregarding my mother’s long-ago comment that “nice girls don’t sit at the bar” and order a chicken salad sandwich. With salt and vinegar chips. And a cold beer in my custom mug, reserved for regular patrons. So so good. Comfort food.

I had a chicken salad sandwich on wheat, with a side of chips the other night for a late night dinner. But instead of the happy sounds of a bar come to life, my background was the sound of beeps. Pages. And the wheezed breathing of my little boy.

We had one of those infrequent but rattling episodes with Will, when a seemingly innocuous respiratory issue turned unnerving, with my kiddo having two seizures barely 12 hours apart, the last one so lengthy and scary that the paramedics were called and a trip to the emergency room taken. When you have a child with neurological issues, you simply don’t fuck around with things. We are so conditioned that I even have an old school backpack of Will’s loaded with things for a hospital stay. Pre-packing a bag. Not just for pregnant women any more.

Tests were run. Will’s health history was repeated over and over to various medical personnel. Calls made – I now have a “don’t call us, we’ll call you” rule for times like this. Time killed by aimlessly clicking a TV remote over and over and over.

It was during a rare quiet moment, when Will was sleeping in his favorite position – tuchus in the air, head on crossed arms, snoring thanks to the congestion – that the mister and I realized it had been a long time since lunch. I shuffled off to the hospital cafeteria, where I was greeted with steaming trays of food that had no appeal. Then I saw a list of deli items, which included my beloved chicken salad. Comfort food. For a time when I needed comforting badly.

And in the chaos and anxiousness of a emergency room, I ate my personal version of soul food. As much as I could, anyway. Situations like the one I was in have a way of curtailing one’s appetite. Great diet tip but I wouldn’t recommend it for the long haul.

Somehow, that combination of the chicken salad and tomato and salt and vinegar chips took me back to sitting on that bar stool. To my youth when my only responsibility was getting educated. Before shunts and seizures and medicines and my sweet boy were at the top of my responsibility list.

And just for a moment, it felt as if all would be OK.

We're home now, nursing that infection as best we can (damn thing is viral, so it doesn't appreciate the whole "better living through chemistry" concept.) Will is feeling better, as he's back to his usual antics -- a whole bottle of one of my health supplements and his favorite stuffed toy enjoyed time in the washer yesterday. I'm still recovering, as days such as the one we had on Sunday send me into a bit of caregiver's post-traumatic stress. To be expected, from what I understand. But as long as my kiddo's on the mend, I can deal with anything.

Been thinking about that chicken salad sandwich. A lot. But I think that it's best reserved for moments when I really need it. To feed my soul. An extreme special occasion, if you will.

For times when I need to know that all will be OK.

State of Being

Things that go bump in the night. Are in my head.

Fitful last night’s sleep. It was a shortened respite to begin with, thanks to plans and events planned and unplanned that went late into the evening. But as my head hit the pillow my mind went into overdrive, as it is wont to do when the world is quiet and dark.

Fears about Will’s future – who will take care of him after I’m gone from this world. I had horrible visions of him as a homeless person. Or crying. Or simply just lonely.

Guilt over his birth – recurring and assuaged somewhat. Buried deep now actually, but still present. My body failed him when I was carrying him. I bear the responsibility of his health issues. Intellectually, I know this is harsh and that Things Just Happen. But try as I might, I cannot completely shake the residue.

I’m still angry with God. Why my child? Why my sweet boy? He doesn’t deserve any of this pain and crazy way to live. I see photos of families enjoying vacations and camp and soccer and softball and so many other standard issue activities. Those sorts of pictures are not part of our photo album nor will they be. And while I don’t begrudge my friends any of the joys of these moments (and I do so enjoy sharing in the experiences of their lives), I’d be lying if I said I wasn’t a little jealous. There. I said it. The ugly truth. Laden with tears and a bit of envy. I love my son more than you can ever imagine – but oh how I wish our reality was different sometimes.

I am thankful that a resolution to the serious health issues we’ve experienced seems to have been reached. Several rounds of antibiotics and a scheduled surgery for ear tubes look to do the trick. I know that God has provided for and is taking care of Will. But I’m still out of sorts with Him. And this anger is keeping me from worship and church. Don’t feel like we fit in at the moment. Will or me. I hate that. Makes me sad and profoundly lonely, as I love the fellowship I gain from being with the family of believers and the perspective I gain from corporate worship. But right now…

I’m not sharing any of this to garner sympathy or pity or consolation. Not at all. Don’t want it. Mortified to think about it. Nor am I looking for ways to fix this or condemnation or anyone telling me how to feel or that these emotions aren’t valid. I simply needed to get this shit out of my head and put it someplace. My blog, my rules.

Saw the movie Inception recently. Trippy flick. And I have to wonder if my subconscious, inspired by the film, prompted me to regurgitate all of these things in the hopes that someone would steal them from me and dispose of them. Worth a try. Heh.

I’ll be fine. Will is good at the moment – a little whiny, but what bored eight-year-old isn’t. I’m just hurting more than a little. All part of My Version of Motherhood.

Stay Flexible

The best laid schemes o' mice an' men
Gang aft agley,
An' lea'e us nought but grief an' pain,
For promis'd joy!
~ Robert Burns

I should have been out and about and attending a meeting I’d been looking forward to right about… now.

But.

(You know there’s always a but with a lead-in like that.)

Young William’s health issues reared their horrible heads.

And just like that, my plans changes.

Seizure. Meds. Sleep. Gentle tending. Night night.

My ears are wired. My eyes are single focused. I don’t engage the recliner part of the sofa since I need to be able to get up and quickly at a moment’s notice.

Tonight, my parental concern is coupled with some disappointment. I was really looking forward to the meeting I had on the schedule. The subject matter was something that interests me – and I was hoping to plug in with the sponsoring non-profit so I can use some of my overly extensive training and skills.

Not to be. My version of motherhood took priority.

And I’d be lying if I said this didn’t irk me. Please understand that I’m not irked with Will – it’s the circumstances that make me mad.

It’s frustrating. I want to reach out and expand my scope – to do things that I have some passion about and to share myself with the community. But my first priority – now, then and always – is to my child. His needs supersede everything.

And tonight, he needed me. So my plans were rearranged. As they needed to be.

True confession: I had a little, very brief pity party for myself. But it didn’t last long. Not at all. When one starts reflecting on one’s blessings, even in the face of a trying situation, the pity party gets busted up pretty damn quickly.

I’m blessed to have faith that sustains and a God who doesn’t leave me, even when I get overwhelmed and forgetful.

I’m blessed to have true friends new and longtime who listen when I ask, who don’t pity when I vent, who don’t abandon when I’m not perfect. Who take me just as I am, flaws and weird life and all.

Most of all, I’m blessed to have an amazing, resilient child who bounces back after crises, who is the strongest person I know.

Who is my hero.

Priorities.

Walking through the valley

I know God never gives you more than you can handle. I just wish He didn’t trust me so much.
~ Mother Teresa

It’s become a Saturday standard around here.

Will had a seizure just now. This one was particularly bad. Tonic-clonic (the type of seizure formerly known as grand mal. Prince isn’t the only one that can change his name…) And while it lasted probably around three minutes, it seemed like an eternity.

Can I just tell you how much I effing HATE that he has to go through this… you cannot even fathom the depth of my hate for this.

I seriously think I know what hell looks like – it’s watching your baby going through such a horrible episode, his body in unprovoked angst, while you stand by, helpless to stop or control it.

I would not wish this on my worst enemy.

And mixed in with the pain and drained emotions is anger. Yeah. Not at myself, for once. Novel.

I’m angry at this moment... at God.

I just don’t understand why this has to happen to MY boy. Who never ever did anything to deserve this. Whose entire existence, since the very moment he came into this world, has been plagued with issues of the health variety. C’mon – he nearly died at only two weeks old because of his precarious health. I know that this sort of thing is all he knows. But that doesn’t mean it doesn’t suck. Big fucking time.

I found myself, just moments ago, with tears running down my face and catches in my throat. Bargaining with God. Give me the seizures and the pain – take them from Will and give them to me. When one’s heart walks around outside one’s body, one does and says whatever she can to protect that heart.

I know that’s not God’s style – not His thing. He loves Will. He loves me. And we love Him. There is no question about any of that. But a mother in pain for her child says many things in the heat of the moment trying to make sense of what is to her a senseless situation.

A very wise friend (who is also a pastor) told me that it’s OK to be mad at God – if anyone can take it, He can. But (and you know there’s always a “but” with this sort of thing…) you just can’t let it consume you. Much like Ari Gold always says, you eventually gotta hug it out. In a manner of speaking.

Will’s sleeping it off now, sawing logs like he’s in the finals of the Lumberjack Games. (He inherited the Johnson sinus issues. As well as the Johnson wide feet. Lucky us.) And after some TLC from some dear friends who made me giggle, some counsel from a loving pal and some quiet time with God, I think I’ve regained some equilibrium.

Not sure why this episode affected me so deeply.

Maybe it’s because it hit Will so hard.

Maybe it’s because my feelings of helplessness simply reached their tolerance point.

Maybe it’s just because.

If you should ever leave me
Though life would still go on, believe me
The world could show nothing to me
So what good would livin' do me
God only knows what I'd be without you

Demon elephants are mucking up my living room... film at 11

I’m one of those people who dreams. A lot. Both the day kind and the night kind.

And while I can control the day kind, the night kind is more of a renegade. Those dreams. A different beast. Sometimes silly, sometimes inscrutable, sometimes crazy. Those I can process. Then leave behind, save for recounting the most interesting ones.

It’s the scary dreams I have a hard time leaving behind. Especially the ones with recurring themes.

And I have one in particular that haunts my very soul.

It involves Will. Dying. Young.

The moment I realize what’s happening in my subconscious is a tough one, as I fight like hell to wake up to stop the tragedy from playing out. Sometimes I’m successful. Sometimes not so much.

I had one of these dreams the other night. Days later, I happened to mention it to The Mister in casual conversation.

He got very quiet, then told me he had a similar nightmare. Except it involved us dying, leaving Will alone. Uncared for. Homeless and vulnerable.

Sent a shiver up my spine. Pierced my soul. Careened tears rolling down my cheeks

Even now.

And while we’re taking steps to prepare for Will’s financial future – a will, a trust, prudent planning – the future in general is daunting and frankly, a little terrifying from this perspective.

We do not know exactly what Will shall be as he matures and grows older. But I am realizing that our less-than-standard issue path is going to continue. And while I privately mourn little things that I once took for granted, I know I need to check all my guilt of the past and my uncertainty of the future at the door for the sake of Will’s present. So that his issues of the past can be handled in order for his future to be as brightly maximized as possible.

It’s not easy.

It makes me pensive.

And more than a little blue.

But it is what it is.

I hate the elephants in the room. Hate them. Wouldn’t wish them on anyone. And it seems addressing them doesn’t make them any more pleasant.

I just need to resign myself to the fact that they’re there. Get prepared to clean up the shit that they drop (and boy, do elephants shit a lot.) And figure out how to carry on. Bravely.

For Will.

Always for Will.

Power Failure

Tough evening here at my house.

Frustrating.

Angry.

Tearful.

For both Will and me.

He's sleeping now, cheeks still pink and eyes red-rimmed from crying.

All because he and his mama had a communication stalemate.

My brave little boy wanted something tonight -- something that involved "turning it on." But he never could get me to understand what it was he wanted.

I tried everything. Oh, how I tried. We played with every toy that was tumbled onto the floor of his room. Music was turned on and off. Lights flickered.

"Will, please tell Mama what it is you want."

"I need you to turn it on."

And so it went. For over an hour. Neither one of us able to break through the wall and get to that ah-ha moment we both so desperately wanted.

I finally walked away, to try and gather my thoughts and to glean some clarity. He closed the door of his room and sobbed angrily. I had not been able to meet his need. He had not been able to tell me what that need was.

I can see the frustration in his eyes. Hear it in his voice. He wants so much to engage with me, to share things with me.

His skill set just isn't cooperating.

And it breaks my heart. I want to help him. But even my best efforts weren't enough. Not this time.

So as he sleeps, I will try to figure out what it was he was trying to tell me. Hoping for the best.

Tomorrow is another day. after all.

A little thing...

A peanut sat on a railroad track
His heart was all a'flutter
Around the bend came Number 10
Toot toot! Peanut butter!

Will smells like peanut butter this morning. And bananas. A very typical, standard-issue boy-type smell.

For the very first time.

He likes peanut butter. Just ate some for breakfast. Granted it was mixed in with some banana yogurt.

But still. A first is a first.

Can a PB&J be far behind?

Will smells like peanut butter.

The most beautiful smell in the world. At least to me.

Playing the Hot Corner: Casanova

A son is a son till he takes him a wife, a daughter is a daughter all of her life.
~ Author Unknown

I knew it was going to come someday. Thought I was even prepared for it. Part of life and the logical progression of things and all.

I just wasn't expecting it to happen so soon. Like now. This morning.

I was thrown over by my boy child for a cute younger woman.

*sob*

Baseball Saturday. We were sitting in the dugout, Will and I, chatting about swinging the bat and how we were going to keep our collective eyes on the ball when we were at the plate.

And then she arrived. Lindsey. Bubbly. Brunette. In her yellow "Rays Community Outreach" t-shirt -- she had come to the game today as a representative of the American League Champion Tampa Bay Rays. WHOOOOO!!! She sat down on the bench next to us -- a pebble had gotten in her trainers and she took her shoe off to shake it out.

"Hewhoo," said the spider, who sported the slightly toothless grin of a seven-year-old male, to the fly.

"Well hi there! What's your name?" The Object of Will's Affection took off her sunglasses to chat.

"My name is Will and I am seven years old."

He would have offered up his home phone number, address and the fact that he likes long walks on the beach if he'd been given half the chance. But it was National Anthem time and so the declaration of everlasting love would have to wait until the rocket's red glare had come and gone.

Lindsey stood up and asked Will if he was ready to play some baseball. That was all it took. He stood up, grabbed her hand and said "Let's go!" But before they could ride off into the sunset together, he turned, looked at me and said, with ominous emphasis, "BYE."

Well then.

Just call me Chopped Liver. Red Headed Step Child. Wallflower.

The happy couple walked to the third base line for the anthem singing. Will's antsy pants soon got the better of him and I had to become the proverbial third wheel in order to keep the ensuing chaos down to a minimum.

As chance would have it, my future-daughter-in-law was assisting in the field on first base. In a smidge of lovely serendipity, Will's favorite Rays player is Carlos Peña. Who plays first base. Cupid's arrow really had some heat on it today.

Every time Will hit and ran to first, the charm was in full effect. Smiles. Giggles. The "aren't I cute" look.

Barf.

Eventually, the attention span of the seven-year-old boy won out over the affection of the seven-year-old boy and our interest in baseball and all its charms for the day waned. I knew that It was time to go when he played right field from the relative comfort of his tuchus.

But the die had been cast. The Flirt had been unleashed. I knew he had the potential within him --but this was the first time he used his powers to charm so thoroughly. Including totally throwing me over for a babe.

I suppose it's now my turn to feel the growing pains. Part of the process. Not sure if I'm ready, but, like with most motherhood-type things, I really have no choice.

Let's go.

My Heart

Love is hugging. Love is kissing. 

Love is saying no sometimes.

Love is what makes you smile when you're tired.

My mommy loves me more than anybody. 

You don't see anyone else kissing me to sleep at night.

There are two kinds of love - our love and God's love. 

But God makes both kinds of them. 

Love is important to God.

You really shouldn't say 'I love you' unless you mean it. 

But if you mean it, you should say it a lot. 

People forget, and it's good for them to get reminded.

*Quotes taken from Funny Love Quotes by Kids

It's friendship, friendship...

... just a perfect blendship
When other friendships are soon forgot
Ours will still be hot
Da da da da da da dig dig dig

Will has a new friend named Jake. Pretty cool, huh? Oh -- you have no idea.

Jake is the eldest son of my trainer/friend Stephanie. I'm hesitant to call her simply my trainer because we are becoming very good friends. She is amazing and I count her amongst my greatest blessings of this year.

Anyhoo -- we were chatting while pounding out some cardio about a week or so ago and I happened to mention that I was looking for a new babysitter, as my last regular one had the nerve to graduate from high school and go away to college. As fate and some divine intervention would have it, Steph mentioned that Jake had completed the Red Cross babysitting course and was interested in earning a little coin for the holidays.

Serendipity at its finest.

So, last Friday, Will and I went and hung out with our new pals -- he and Jake spent time together while I got in a conditioning workout, as my foot is still hurtin'. They playing the drums sang, tossed around a ball, goofed off on the piano, wrestled and rough-housed. Will had a wonderful time and hugs and kisses were dispensed all the way around when it was time to go.

Over the weekend, Will would talk about Jake -- just in passing here and there, but enough to let me know that their time together had made an impact.

Come to find out today that it just wasn't a one way thing. Steph told me that all weekend long, Jake talked about Will, telling his friends about this "cool little boy" that he was going to start watching and how much fun they had.

He never mentioned Will's disabilities. Nor his crazy health history. Nor his limitations.

Jake saw simply Will -- the REAL Will. A goofy, silly, happy, funny and yes, musical little boy.

He "got" him -- for who he is beneath all the labels. He's just a kid.

Beautiful. My heart is still full and singing about this. And yes, I'm crying (what -- have we just met? Please.) but they are tears of joy and of possibility.

Yep, Will has a new friend named Jake. We should all be so lucky to have our own Jakes in our lives -- those people who see beyond and around and through the road blocks and labels and smoke and mirror and see use for who we really and truly are. And like what they see.

Thanks, Jake.

... I think this is the beginning of a beautiful friendship.
~ Humphrey Bogart

Warm Head, Grateful Heart

A night-cap decked his brows instead of bay,
A cap by night - a stocking all the day!
~ Oliver Goldsmith

My great friend perpstu shared a tender post this morning about her labor of love: knitting little caps for newborns in developing countries in conjunction with the Save the Children Knit One, Save One project.

Great cause. Really great cause.

And one with which I have a little bit of first hand experience.



That's Will, age two months and change, in a hand-knit hat, hanging out in the NICU.

Even underneath the tubes and wires, he's pretty darn adorable, don't you think?

And while we certainly don't live in a developing nation, we have experienced the gift of having something handmade with love shared with us at a time when it was desperately needed.

(Yeah -- that's Will's mama with her boy, having a little quality connection time there. Note the cap on his head...)

Sadly, I don't knit. Fumble fingers here isn't deft enough to wield those needles with any sort of precision, grace or style. However, I can cheer on and encourage those of y'all who do. Like my chica perpstu.

I can also say, on behalf of the mamas (and daddys) of the little ones whose heads will be warm and cozy because of giving hearts and willing talents, thank you.

You have no idea how much your seemingly little contribution means.

Cause of My Heart

Today is the March of Dimes Prematurity Awareness Day.

Why do I care about such a thing?

Here's the answer:





That's Will, not long after he was born. Still hard for me to look at these pictures, even seven years later.

Twenty-five weeks gestation.
Weight of one pound, 10 ounces.
Three and a half months in the NeoNatal Intensive Care Unit.

His early start in life came with a myriad of health problems, which he bravely and stubbornly battles still today, as he is developmentally delayed, with mild cerebral palsy and a seizure disorder.

However, as you probably do know, he is a bright, funny, creative, sweet-natured fellow who is the light of my life and my primary focus and inspiration.

The March of Dimes folks have set up a online petition that you can sign indicating your support for more public research dollars to identify causes of preterm labor and prematurity, and to identify and test promising interventions. No donation is necessary -- just your virtual John or Jane Hancock.

If you're so inclined, please take a second to check this out -- I've got a handy-dandy place to sign right here in the sidebar of the blog. If you're even more inclined and curious and would like to read more about our journey, check out my blog pieces entitled The Will Chronicles.

As you can imagine, I'm more than passionate about this cause and wanted to share a bit of that with y'all.

Thanks and love.

It Ain't Easy Being Green...

If I ran away, I’d never have the strength to go very far
How would they hear the beating of my heart...

When I was a little girl, I would, as many kiddos do, get angry with my parents for one thing or another -- and then threaten to run away. Had a little train case that used to belong to my nana which I would pack with my important personal belongings -- a blanket, couple of stuffed animals and a book or five. And then with a defiant look on my face I would march out the door, right past my parents, determined never to return. At least for a while.

Lest you think my folks were candidates for the Department of Children and Families paddy wagon for letting me leave so easily, I can assure you they were not as much concerned as they were confident in my predictability. For each and every time I began my runaway adventure, I made a stop at our next door neighbors’ house. The lady of the house was a genteel Southern belle named Mary Elizabeth, also known affectionately as Bibby, who was my third grandmother.

Bibby would invite me in, chat with me a bit, then proceed to feed me dinner (usually waffles!) -- I always seemed to hit the road around suppertime. After my tummy was full and my chest relieved of my grievances, she would walk me through the gate between our houses and deposit me back home safe and sound.

Bibby passed away earlier this year -- and while I think of her often, she’s really been on my mind today.

You see, I’m looking to run away and could use a dose of her special TLC. And some waffles.

It’s been a tough couple of days around here. Days and events that have reminded me of the challenges I face as the mama to a special needs kiddo. Will had a seizure on Sunday night -- he’s fine now, no worse for wear. I found him in the midst of it next to his keyboard. Nothing more sobering than discovering your child in distress like that and not knowing that something had happened. Fortunately, it didn’t last long -- didn’t even have to administer the medication we have for such events. After a good night’s sleep and a quiet (relatively speaking -- nothing is ever quiet with Will around) day at home yesterday, he appears to be right as rain. Thank goodness.

However, he put on a terribly loud and dramatic display this morning in front of school -- a world-class tantrum. Weeping, wailing, tears -- the whole tantrum repertoire . He sat down smack in the middle of the sidewalk, refusing to move -- or to tell me why he was so upset. You would have thought I was asking him to walk across coals barefoot or to watch a marathon of that dreadful Flava Flav sitcom. After physically picking him up -- all 55 pounds of red-faced, teary charm -- and carrying him to the door, I finally got him to the classroom. Where he walked in, sat next to his teacher, looked up and calmly said “it’s too early for school.” And proceeded to have a lovely and productive day.

Oy.

That little incident was the straw that broke the camel’s tear drops -- and I proceeded to sob on and off for the better part of the day. Ridiculous, I know -- but I think a good deal of that angst was some post-traumatic stress from the seizure over the weekend. No matter how hardened or accustomed I think I might be to such things, my psyche always takes a hit when they happen -- as does my subconscious. My dreams have been vivid and unsettling the last two nights -- all about me not having control of a situation. Paging Dr. Freud...

I’m tired. In the mood to run away from being a responsible adult. Not practical. Not something I’m especially proud of. But it is what it is. I love Will - please don’t get me wrong. He is the love of my life. But sometimes, I just need a breather. A change. A time-out. Today is one of those days.

I tend to wallow in the woe-is-me-my-life-sucks mud puddle for a little while. Then... I remember all my blessings. Which always exceed the number of not-so-great things on the list of my life. And I know that this wretched mood too shall pass. It always does.

On days like this, I find myself singing this song.



It's not that easy being green
Having to spend each day the color of the leaves
When I think it could be nicer being red, or yellow or gold
Or something much more colorful like that

It's not easy being green
It seems you blend in with so many other ordinary things
And people tend to pass you over 'cause you're
Not standing out like flashy sparkles in the water
Or stars in the sky

But green's the color of Spring
And green can be cool and friendly-like
And green can be big like an ocean, or important
Like a mountain, or tall like a tree

When green is all there is to be
It could make you wonder why, but why wonder why
Wonder, I am green and it'll do fine, it's beautiful
And I think it's what I want to be


Yep. I am green. It’s beautiful. And when all is said and done, it is what I want to be.

OK. Break over.

And... we're back.

It only took 48 hours for my regular world to come crashing back into my post-vacation relaxed reverie. Actually, that's about 24 hours more than I thought I'd get.

Just got off the phone with the children's hospital, preregistering Will for an MRI next week. The neurosurgeon wants to run the test to check on the possibility of some funkiness with the shunt and the cranium. Seems that there was a little something-something on Will's last CT scan that raised an eyebrow. Better safe than sorry. I know. Probably nothing. Still not easy. Not at all.

(And I'm chugging YooHoo Lite like it's going out of style right now as a coping mechanism. Yuck. But I've got nothing else "bad" for me in the house. Can you say emotional eater? Old habits die hard.)

These sorts of tests are routine for us -- we've had so many CT scans over the years that I think I could run the machine myself. But the MRI is a bit of a different beast -- Will's got to be knocked out to lay still for the test to work. And I can't go back with him for the procedure. Both of which don't set completely well with me. So I'll sit anxiously in the waiting room, alone, trying not to focus on the what-ifs, but on the what-ares.

The Mister will be somewhere away working, as he usually is -- and this is not the kind of Will Medical Thing he needs to upend his work life for. But still.

I know this might come across as whining -- but I promise I'm not (only a few tears this afternoon.) Just doing a little venting. Gotta talk to someone somehow. And believe me, in the overall scheme of what Will's been through, this is a walk-in-the-park. It'll be harder on me than on him -- which is the way I always want it to be.

I guess I was just looking to be a regular mom, following my vacation, for a little while longer. And actually, I suppose I am, as this totally falls into my version of motherhood.

Things are indeed back to normal for us at Casa de Jane.

I just rather wish my normal wasn't so weird.

Will's World, Will's World... Party on. Excellent!

A news update, hot off the press, from Will's World...

While Mama was away, he took the first HUGE step towards potty training. There is hope, y'all.

Speech therapy was a BIG success, again while Mama was away. Ate cookie crumbs, some pureed mac & cheese and spontaneously took drinks from his sippy cup without being prompted -- even using the juice as a chaser to get rid of something "distasteful" (a peach) in his mouth.

Taking a bath one night last week before I left, we were playing with the ubiquitous bathtub toys that fill the bathroom. I asked Will casually what color the little lobster toy was that we were messing with. After a beat to process, he said, clear as a bell "That is bwue." And gosh darn it, he was right.

I'm counting my blessings right now -- they may be little to some, but to us, they're monumental. Rock on, my darling child. Rock on.

Sighting Redux

My faith in education has been restored.

Remember this?

Driving to get Will today, I noticed that someone had taken the giant red editing pen to the marquee and straightened some things out:

It's the little things in life that make me happy. This is one of them.

And the award for Father of the Year goes to...

this idiot.

An Australian driver who secured a carton of beer in his car with a seat belt but left a 5-year-old child unrestrained was fined 750 Australian dollars ($710; €460), police said Tuesday.

Constable Wayne Burnett said he was "shocked and appalled" when he pulled over the unregistered car on Friday in the central Australian town of Alice Springs.

The 30-can carton was strapped in between the two adults sitting in the back seat of the car. The child was also in back, on the vehicle's floor.

"The child was sitting in the lump in the center, unrestrained," Burnett told reporters Tuesday.

"I haven't ever seen something like this before," he said. "This is the first time that the beer has taken priority over a child."

What. A. Moron. With Moron Friends to boot.

Now I don't feel so bad about my little trips through the drive-thru liquor store with Will singing "Don't You Want Me Baby" in the back seat.

Properly secured in his booster car seat in the back seat. Thankyouverymuch.

*goes off whistling*

Mama's Day

For mamas and nanas and grandmas and sissies and aunties -- actually all women... this one's for you. (thanks to my dear friend Jeannie for sending this along to me.)

~~~~~

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible.

The Invisible Mom.

Some days I am only a pair of hands, nothing more:
Can you fix this? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being.

I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

I was certain that these were the hands that once held books and the eyes that studied English Lit and the mind that graduated summa cum laude - but now they had disappeared into the peanut butter, never to be seen again.

She's going, she's going, she's gone!

One night, a group of us were having dinner, celebrating The return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was
feeling pretty pathetic, when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.'

It was a book on the great cathedrals of Europe. I wasn't exactly sure why she'd given it to me until I read her inscription:

'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. I would discover what would become for me, four life-changing truths, after which I could pattern my work:

No one can say who built the great cathedrals - we have no record of their names.

These builders gave their whole lives for a work they would never see finished.

They made great sacrifices and expected no credit.

The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it. The workman replied, ’Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, "I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become."

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life. It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, to add, 'You're gonna love it here.'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Public Service Announcement

This weekend, hundreds, nay thousands of people will be pounding the pavement to raise money for an amazing cause... the March of Dimes. The leading nonprofit organization for pregnancy and baby health, MOD is dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality.

I'm all for helping out charities and philanthropic efforts in any way possible. It's important and imperative for me to give something back to our world and to help those who need it. It's just how I'm programmed.

However, this one is different. It's personal. Deeply and painfully so.

Will owes his life in some part to the research that March of Dimes helps to fund. Plain and simple.

I won't prattle on about the details of his amazing, wacky and complicated health history -- I've downloaded my psyche (or at least the part I'm cognizant of -- there's still more angst to mine, I think) about this already in what I call The Will Chronicles. But -- this is the first time that I've been able to post pictures of his earliest days. It's not the "able physically" part that was the roadblock -- I've got the hang of the scan/edit/post thing down pat. It's the "able emotionally" part that held me up. Still isn't easy to look at them nearly seven years removed. The scar tissue on my soul is still shockingly fresh, the memories still hauntingly vibrant.

Here are some facts, just to give you an idea of what the March of Dimes is tackling...

Educational Minute: One out of every eight babies is born prematurely in the United States. That's approximately half a million little ones every year.

Most pregnancies last around 40 weeks. Babies born between 37 and 42 completed weeks of pregnancy are called full term. Babies born before 37 completed weeks of pregnancy are called premature.

Premature birth is a serious health problem. Premature babies are at increased risk for newborn health complications, as well as lasting disabilities, such as mental handicaps, cerebral palsy, lung and gastrointestinal problems, vision and hearing loss, and even death. Many premature babies require care in a neonatal intensive care unit (NICU), which has specialized medical staff and equipment that can deal with the multiple problems faced by premature infants.

Most premature babies (71.2 percent) are born between 34 and 36 weeks of gestation. These are called late preterm births. Almost 13 percent of premature babies are born between 32 and 33 weeks of gestation, about 10 percent between 28 and 31 weeks, and about 6 percent at less than 28 weeks of gestation.


Will was in that last, very scary 6 percent, coming into the world at 25 weeks gestation. And yes, he still wrestles with a number of those conditions common to micropreemies.

Despite statistics and odds and brushes with mortality, he's thriving, bringing joy, pride and wonderful standard kid annoyance to me every single day. If you ever want to see a living, breathing miracle in action, I'll be happy to bring him over and let him share his infectious personality with you.

He is amazing.

Unfortunately, we're not going to be participating in the physical part of the March for Babies this year -- time and schedules and life just got in the way. But we'll be there in spirit.

I'm blathering on about this just as a PSA to ask that if you are approached by someone to donate to this unbelievably worthy cause -- please seriously consider it. And don't be surprised if this time next year, I'll have hit y'all up to help out. I'm not shy when it comes to matters affecting my baby. Yes, he's almost seven. But he's still my baby, no matter how much he protests to the contrary.


They do good work, these March of Dimes folks.

I should know.