Love Is Enough

My son Shale lived for four years, ten months and 17 days.

As of Saturday, August 7, 2010, he's been dead for four years ten months and 18 days.

He's now been dead longer than he lived. And my heart is having trouble coping with that fact. The reality of that date passing actually means little. Shale is still gone, lost in the ether of love and memory and our lives proceed onwards as though nothing has changed.

But a lot has changed in the time my son has been gone.

I've changed, my husband's changed, my kids have been forever altered. The person I used to be no longer exists. She was buried beside her son and it's taken me all these years and tears to claw my way out of the grief and find myself again.

Friendships have dissolved and new ones created, family members have moved on, a child has been lost, a new one has been found. Our world no longer resembles the one we left behind when we said goodbye to our son.

But through all of this, he's never been forgotten.

I worry now, as time ticks slowly by, his memory will fade into oblivion. I wonder if my children will remember their little brother when they are fully grown and have children of their own. I fret because there is no way I can make my youngest understand he has a brother he'll never know. I wake up in a cold sweat still, all these years later, because I just remembered my son is dead.

I had hoped that the passing of time would mean this pain we carry in our hearts would lessen.

Instead, the pain is as heavy and cloying as a wet wool blanket, threatening to smother the joy we work so hard to fill our lives with. It's the memories of my son which are fading. I can no longer remember his smell on command or immediately recall what Bug's laughter sounds like. Time is not robbing the pain but instead thieving the memories his life created.

And I can do nothing to stop this process other than grieve the inevitable loss.

Will *I* remember my son when I'm old and crippled?

There is no expiration for grieving, I know this, but I'm tired of the sadness. I'm tired of remembering I'm a mother to a dead kid. I'm exhausted from saying I have four children when people can only see three.

My son's absence has now shaped me and our family as much as his life ever did.

This past Saturday, I said goodbye to my son, again. I let him go. I promised him and myself that I would never forget him. I will always love him, with every breath I ever take. But I had to let the pain of his passing go. I can't spend the rest of my life hauling this burden around with me, weighing my happiness down.

I can't change the past. I can't bring Shale back.

But it took four years, nine months and 18 days to say good bye to the pain and guilt I've harboured since I said goodbye to him in a darkened emergency room. A million wishes can't undo his death and all the what-ifs in the world won't help us heal.

I will always mourn my son and wonder what life would have been like if he lived. But for the first time in all these years, I finally feel at peace with his fate and mine, and feel like I can spend the rest of my life loving him like a mother should.

No matter how many days pass, I will always be Shale's mom. And I will always love you, Bug. I promise. I finally understand, I may never have new memories with you, and the ones I have may fade like an old photograph, but the love I have, it is enough.

Tutus For Tanner

My Tutu for Tanner. I look like the cracked out hippo from Disney's Fantasia when I wear it.

Last summer, I had the opportunity to meet a little boy, the nephew of a good friend of mine.

He was typical of most little boys; he loves dinosaurs, has a passion for Disneyland and dribbled ketchup down his chin while he ate his hamburger. He made silly jokes and liked to tease me and like my son, he stole my camera and took insane pictures of everyone around him and laughed maniacally when we'd mug for him.

He was pure joy wrapped up in package of shaggy hair and goofy smiles.

He is also dying.

His name is Tanner and he has Duchenne's Muscular Dystrophy. His story is here, on his aunt's site and it would be worth your time if you read it.

I didn't like Tanner because he is disabled or dying and I felt sorry for him. I liked Tanner because he was funny. And pure. And he reminded me of my sons and for the few days I was lucky enough to spend with him, I was too busy loving him to remember I missed my own children.

But for all the joy Tanner shares with the world by simply existing, his mother wears a worn smile and hides the knowing look behind her eyes. She knows her time with Tanner is limited and she's determined to make the most of what time he has, to wring the last drop of love and grace and joy out of her son's life. To create memories that will last her a lifetime once he's inevitably gone.

I have often put myself in Tanner's mom's shoes and wondered if she is luckier than I am. She knows the outcome of her son's disabilities and she can prepare for it. Is that better than suddenly being hit over the head with an unexpected death? I never got a chance to make sure Shale's dreams came true, I didn't know the last time I tucked him into bed would be the last time he'd ever look at me with his big blue eyes and smile.

In the end, it doesn't matter. Shale is gone and one day Tanner will be too. No matter the paths Tanner's mom and I took to get there, our destination is the same. One day we will be standing side by side, grieving the lost lives of our boys. We will both be members of the same club no parent should have to be in.

Tanner's time is running out.

But unlike Shale, Tanner may not get the luxury of living out his last moments of life in his own house. Tanner's disabilities and medical conditions are threatening to take him away from his home and force him into a hospital.

No child should have to die in a hospital, away from the comfort of home.

Tanner's mom needs help keeping her son home with her for as long as he lives. Which is where the inspiring and gracious Scott Stratten comes in. He's hosting and managing the awesome #TutusForTanner Great Tweet-A-Thon Auction. It's live right now and the prizes are incredible. There is an ipad, an ipod Touch, a trampoline, a trip to Vegas and so much more. I'm just too damn lazy to type it all out. A complete list of prizes available is here.

I couldn't imagine not having my son with me when he passed. And when I think of Jumby and his fragile medical health and what the future holds for him and how long his timeline might be, my guts twist at the thought of not being able to take care of him until his end simply because I couldn't afford the nursing care required to keep him home.

That is a crime and it's one Tanner should never know.

So I'm holding out my hand and asking for a little help. It doesn't matter how much you can donate, only that you donate.

Do it for Tanner. Do it for every child who doesn't have a lot of days left to make their dreams come true.

Donate with the ChipIn widget below and for every $10 you donate you will get a raffle entry to win one of the awesome prizes below. $100 gets you 10 raffle entries. After donating, PLEASE go here to pick which prizes you’d like to be entered for. The Tweetathon will be over at 9pm EST on Wednesday. Only donations during that window will qualify for the prizes below.

Everyone who donates $50 or more gets access to Scott Stratten's (@unmarketing) UnBootCamp (5 week online course) as well. If you donate $200 or more, not only do you get 20 raffle entries, he will also do a video screencast review of your website and/or Twitter/Facebook page.

Happy Birthday

Before my son passed away I always said that today, January 4, was the scariest day of my life. Since his death, it's been bumped to the second scariest day of my life and is tied with the day I decided to trust a hairdresser who went to school with my husband and walked out of the salon with pink, orange and black striped hair. Turned out the hairdresser was madly in love with my husband in high school and took delight in soothing his spurned affections by making me look like a clown on crack. Good times.

Today is Shalebug's ninth birthday. (Holy shit. That seems old. My baby would be nine.)

His birthday was always a reminder of the horror we lived through. Each time we sang happy birthday it was always tinged with the reminder of that fateful day and how it changed our lives so permanently.

Unlike the two badgers babies that preceded him by clawing themselves angrily out of my lady bits, Bug's entrance to the world was like a scene from a low budget horror flick. Or a really bad comedy, depending on how one viewed it.

It was scary for a lot of reasons, none of which included the parts where I was eight centimeters dialated and we ran out of gas on the way to the hospital. There I was huffing and puffing and trying to keep his head from popping out between my legs while my husband fumbled with the gas pump at the gas station we just barely managed to coast our van into.

I panted "Just put five dollars in! We don't have much time!!! Hurry!!!"

My husband however, heard, "Don't worry dude. Even though we can see the top of your kid's head, you should totally stop and talk excitedly to the gas station attendant about our future bundle of joy. I'll just poke his fingers back in so you can examine the joys of child birth with the underpaid gas attendant who got stuck on night shift. Don't worry about me."

To this day Boo swears he tried to hurry but there was a problem with the cash register. I maintain he should have just tossed money at the dude and ran back to his labouring wife, but you say po-tay-to, I'll say po-tah-to.

Still, thanks to some supreme effort on my part, we made it to the hospital in the nick of time. The labour and delivery nurses were amazed that we didn't end up being one of those people who ended up giving birth in the back seat of our vehicle. My husband was amazed his wife knew that many cuss words and managed to hurl them all at his head in one foul sentence after another.

No, January 4 was scary for other reasons. Reasons not just limited to what seemed like an endless session of me sitting there with my legs splayed open as an invitation for every male medical resident in the hospital to come and peer between and then comment on the party happening in my pooter. It's not often a baby gets stuck in the birthing canal so when the doctor on duty has to break out the ole rubber mallet to hammer a birthing mother's pelvis into a a million tiny pieces to free the trapped infant they like to invite the entire hospital staff to come and watch under the guise of "this is a teaching hospital, ma'am."

Nor was January 4 scary thanks to stitches or hemorrhoids or the fact that even though I had finally popped out a nine pound, one ounce baby and more amniotic fluid than a body should ever see, I still weighed more than my damn husband.

No, January 4 officially became scary the moment Shale was delivered and the room went silent. Immediately upon his entrance a hush fell upon the room. I waited for that first squaling breath, that sweet sound when a child takes it's first breath and announces to the world it's arrival and it never came.

Panic over came me and I looked to the nurses, the doctor, my husband,  for some reassurance. Instead I found grim worried looks pasted on each of their faces. The doctor bundled Shale up and instead of holding my baby up for me to see, rushed him to the isolet to help him breathe.

"Why isn't it crying?" I screeched, not even knowing if it was a boy or a girl or a monkey I just gave birth to. "What's going on? What's wrong? I can't hear any cries!!" I shrieked, my voice rising to near hysteria with each syllable I spoke.

"He's breathing, honey," my husband rushed to reassure me, while looking into my eyes and shaking his head so slightly as to warn me to hang on, hold on, something is wrong but don't freak out just yet.

That's when I caught the first glimpse of my baby, my boy. His skin was purple and his feet were deformed; pointing in the wrong direction as though they were on backwards.

It was that moment in time, that exact moment life as I knew it stopped. It was that moment, with the sight of those purple twisted and gnarled baby feet, our lives as we knew it ceased to exist and we were thrust into new lives, new unfamiliar roles we were wholly unprepared for.

The moments after that flew by in a blur. They quickly bundled Shale up and whisked him away from me. My husband insisted they allow me to quickly kiss the top of his head as I lay there trapped on the birthing bed but I wasn't allowed to hold him.

I was all but forgotten as doctors rushed to save my child. Diagnoses were thrown about like darts at board and dire predictions made with every other breath. "He has heart problems." "He has kidney problems." "He's missing a large portion of his brain." "He has a cleft palate." "He looks like he has a palsy of some sort." "He won't make it." "He may make it." "It doesn't look good." "He won't be normal."

Within 90 minutes of his birth they had Bug stuffed into a transport shuttle and flown to a different hospital as I sat and quietly freaked the fuck out. There wasn't much I could do what with a broken pelvis and all. I sent Boo to be with our child as I was devastated at the idea of him being across the city away from me.

It was the beginning of a long journey for our family, as we waited for our son to finally be discharged from the hospital and come home for the first time. Months went by and life formed a new normal. One which included dropping a three and four year old off at a sitter's each day so I could spend the day sitting vigil beside their baby brother as he underwent one procedure to another in his fight to come home.

When he finally made it home, the snow had melted, flowers were blooming and the air was warm. His arrival home was marked with joy and triumph and shades of fear for we now understood how fragile our baby was. But for the first time since he was born my family was complete and sleeping under one roof and I felt whole.

January 4 brought to me a new son and a new life. I knew the moment I saw those little twisted toes life would be different than how I had planned. I didn't know exactly how it was about to change but I knew a massive shift had just occurred in my reality. I tasted real fear for the first time in my life, looked terror straight in the eyes as I watched my child fight for life.

What I didn't know that January 4 was the joy that accompanied fear, or how each low would be triumphed with the sweetest highs we would ever feel. January 4 was scary because life demanded I forget everything I thought I knew and start living in the moment. Shale's existence tested our family's foundation, our courage and our faith that no matter what went wrong love would make it right.

I didn't know the depths of love I was capable of. It was scary because I simply didn't know anything.

I look back now and it doesn't feel scary anymore. Not much does after helplessly watching your child die to be honest. But I realize now January 4 isn't just my beautiful boy's birthday. It's the day his father and I became the people we are now. January 4 birthed our new and forever identities.

It was the day we became parents to a handicapped child and learned how to love wholly and unconditionally, yes.

But more importantly, it was the day we became the forever parents to the bright blue eyed boy we called Bug.

Nothing scary about that, at all.

Happy Birthday my angel boy. Your momma misses you, with each beat of her heart and every breath she draws.

He was a beautiful little Redneck, no?

*My apologies for my absence. I was missing my Bug, quite simply.*