{Originally posted on The Busy Dad Blog}

I’ve written and re-written this first paragraph 4 or 5 times tonight, hating everything that I put on this screen. How can you capture the feeling that washes over you when a beautiful sweet little girl who just a few weeks ago made you smile for no reason other than her flashing you a “who the hell are you?” look is suddenly taken away from this world? I’m pissed. Pissed that it happened to such a pure soul. Pissed that a mother and a father now have to live through the heartbreak of it all. And saddened to the core.

I didn’t know Maddie, Heather or Mike that well, and I only met them once at a gathering recently at their home (of course Maddie won me over right away - who could resist a smile like hers!). But I’m a parent. And that is all the commonality I needed to share with them to feel a stab in the heart when I found out about this last night. If you are a parent, I don’t need to go on. You understand.

If there is any ray of positivity at all that I can squeeze from this, it’s that Maddie’s smile is in the hearts of hundreds if not thousands right now. Her smile has manifested itself in an outpouring of generosity from people like you and me, donating to the March of Dimes in her name; mobilizing to walk as one in her memory; and using our collective voices online to keep that smile alive across the internet.

{Originally posted on Slouching Past 40}

How does it happen that a sixteen-month-old girl with eyes that managed to reflect all of the abundant colors of the ocean at once and with a smile containing such joy that strangers couldn’t help but smile with her, a girl with all of it before her (only 500 days under her belt, give or take), might be here one moment and gone the next?

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

I do not know. I am one of the lucky ones. My son comes home with a sore throat and later spikes a fever. His temperature soars, and I fret. I take him to the doctor, who diagnoses strep throat and hands me a prescription for penicillin. Eighteen hours and three pills later, my child looks and feels remarkably better. He is no longer pale with a slightly greenish cast. He is not hot to the touch. Fatigue does not ring his eyes. I can’t believe how well this medicine works!, he grins. I could almost have gone to school today! And then he glances at me. Worry has crossed his face. He amends: Well, not almost… I’ll be ready tomorrow, though.

All of us wanted Maddie’s story to go like this, and most of us expected that it would.

But a few of you know better. Experience has taught you different and cruel lessons. You were cast out of Eden some time ago. The rest of us bite our lips and hold our children closer, huddling up against one another, afraid that we, too, might be called on, might have to forsake the complacence we clutch as tightly as we do those children of ours, might have to bump up against the fact that our children are mortal, no different from us, from our parents, from their parents and all the parents before them, too. What hubris we show when we congratulate ourselves on how well we’ve managed to protect our offspring when the reality is that we have so little to do with it.

{Originally published on A Smeddling Kiss}

Today I learned of the death of a beautiful little girl.

One of my fellow Blog Nosh editors is Heather Spohr, who has chronicled her difficult pregnancy and life with her husband and darling premature daughter on her blog The Spohrs Are Multiplying. Madeline Alice Spohr passed away yesterday, sometime after Heather tweeted from the hospital, “They are going to intubate her. I’m freaking out.”

I rarely pray, because I’m not sure who I’m praying to, but sometimes when things get scary I fall back onto my Catholic upbringing and find myself repeating the Lord’s Prayer over and over, just sending it out there in case it might help. I did it the morning of 9/11/01, I did it when my dad was in surgery, and I found myself doing it last night after reading that tweet.

The terrible news about Maddie stopped me in my tracks this morning. I forget after 9 years that Pepper was a preemie, too - 6 weeks early - and so I made my way over to Maddie’s March of Dimes page to make a donation. I urge anyone who reads this to do the same.

I realized I hadn’t posted anything in a week, and while looking for something to post, I found a draft I started last month titled “Heartsore” about all the ways I am worried for my daughter. She and I have been having a difficult time lately. She is grumpy and whiny and ungrateful and I am often at a loss how to deal with all of these negative emotions.

As you night expect, re-reading it after learning of Maddie’s death flipped my perspective. I have a beautiful 9 year old girl, smart as a whip and full of neurosis and overflowing with emotions, and I am so grateful. So lucky. And that is what I will tell her tonight when she starts yelling at the computer or whining about bedtime or making faces at the dinner I have prepared for her. I’m going to tell her, “I’m so lucky to have you.” She’ll probably think I’m teasing her at first, but I won’t be, and by the time she falls asleep tonight, I’m going to make sure she understands how much I mean it.

Tomorrow morning, I’ll wake her up for school and she will groan at me and whine about brushing her hair. It will all start all over again, the crying and the lecturing and the love and the anger, and it is difficult to put into word how grateful I am for that.

{Originally posted on Joy Unexpected}

I can’t sleep.

My friend’s baby died today.

Her baby died.

I had read that she has been taken to hospital by ambulance. I was worried, so this afternoon I sent her an email.

Just catching up on what’s going on with your baby girl. I’ve been so busy and wrapped up in my stupid little world.If you need ANYTHING, please don’t hesitate to call me. I’m only an hour-ish away.

Thinking of you all.

She wrote back and said she was worried. Maddie was breathing really hard and the doctors didn’t know why. She was scared, but glad she was being monitored so closely.

I remember feeling worried, but thinking they would figure out what was wrong and she would get better. She had to get better.

Then, tonight, I clicked over to her blog and read this.

My husband was sitting here on the couch with me when I read it. I threw my laptop down and just shouted “NO! NO!!”

I started to shake. I was in shock.

I then called a couple of friends who are also friends with Heather and we sobbed together in disbelieve.

It’s unreal. I still can’t believe it.

Every time I close my eyes to try to sleep, I think of Heather. I think of the last time I saw her- we were at the LA food bank, volunteering our time. She was so kind and wonderful to be around. Towards the end of the day, she got a phone call from her babysitter. Maddie had a fever. I saw the worry instantly sweep over her face. I told her it was okay if she needed to leave. I could just feel the love she had for her baby girl in that moment.

{Originally posted by writer Maggie over at okay. fine. dammit.}

I can’t explain to my family why I’m so sad today; there’s no way they would understand. The only people who will get it are you, you out there, and so I’ve come to this space to add my liquid prayer to your ocean of empathy, to set it a-sail, to hope it reaches its rightful owner.

I mean, what can I say to my husband? That a “friend’s” 17-month-old daughter died unexpectedly? Because we’re not really friends, right? I’ve never met the Spohr’s.

But I know their names as solidly as I know anyone’s in my “real life.” More than that, so much more than that, I know that sweet baby girl’s face. How many times have I scrolled over it in my Reader, my own daughters screaming, “Stop!” My four-year-old smacking her warm palm down on my mouse-hand, saying, “Wait! Go back! Show me dat cute giwl again. I know her! Who is that, mommy? I know her!”

Because they saw that face a time or two on this computer, and it was the kind of face you can’t forget. It was the kind of face that triggered on instant grin on my own. How many times did I lean across the couch to my husband, giggle, and show him that face? Watch his own smile break like a wave?

Still. I am here, on spring break, shuffling through the sand a bit slower, hanging back, healthy and blessed and happy and yet, not. Hugging my girls a bit tighter, answering their questions a beat or two late, distracted. Grief-stricken.

How do we explain to the rest of the world how well we have come to know each other, all of us here? So that if one of us suffers an unfathomable loss we feel it like our own gut-punch? Who is that, mommy? I know her!

I know her too, baby.

I’m shocked. I’m sad. And I’m so, so sorry.

May she light up heaven the way she lit up earth.

{Originally posted on Mommy Pie}

It’s 2 p.m., I’m sitting in a coffee shop surrounded by people. And the tears, they are streaming.

It’s funny, this community of ours. Call us Mommy Bloggers. Call us the Blogosphere. A powerful, and at times awe-inspiring collective voice. More often than not, a beautiful collective heart.

Our friendships forged over late night Tweets and Comments Sections, we find ourselves bonding with women we may never meet face-to-face. Yet, the invisible ties of the Internet that bind us are, inexplicably, many times, just as strong as the ties we feel with those we affectionately call our IRL (In Real Life) Friends.

Beginning today, I make no distinction between the two.

I’m no less happy for a Blog Friend when she lands a great job.

I’m no less sad when she loses it.

I don’t laugh less when she recounts her kid’s latest antics. (Or more times than not, her own.)

I don’t worry less about her during the tough times.

My heart doesn’t break less when she suffers staggering, unimaginable loss.

It’s 2 p.m., I’m sitting in a coffee shop surrounded by people. And the tears, they are streaming.

Heather Spohr was one of our very first editors, joining our Overcoming Adversity channel before our launch thanks to a “bloggy” friendship we struck up while her daughter Maddie was in the hospital. Heather’s husband, Mike, was one of our very first bloggers, sharing with us a post he wrote about what it’s like being a stay-at-home dad caring for a preemie baby daughter. It was, to say the least, hilarious.

A strong sense of humor defines the Spohr family. It bonds them. It defined their daughter, Maddie.

Madeline Alice Spohr, daughter to Heather and Mike Spohr, passed away on April 7, 2009. As bloggers, all we can do is rock collectively in disbelief and then scramble to do what we can to send support across the ether that is our relationships.

So Blog Nosh Magazine is filling our table with the bounty that was Maddie. What follows below is what I consider to be the definitive Maddie post, written by her mother about a man that Maddie and I both felt belonged to us. Yes, that’s right: Matt Lauer.

I officially bow down to you, Maddie. Your smile was always brighter and your eyes always more mesmerizing than mine anyway. Enjoy watching him shower naked from now on. You win.

PS- Below every post about Maddie that will appear, you will find links to a PayPal account set up for the Spohrs. In addition, in lieu of flowers, the Spohr family ask that you donate to the March of Dimes. We’re doing what we can to send a little support their way, with a cherry on top from Blog Nosh Magazine.

***

Mad Lauer {Originally published on The Spohrs Are Multiplying}

When I was seven years old, I got my first crush - David Witherspoon from the TV show Our House (and yes I now know Chad Allen is gay). I eventually moved on to Kevin Arnold from The Wonder Years, then Johnny Depp from 21 Jump Street, and the list goes on from there. I knew Maddie would eventually have a crush on a TV personality, but I figured she would be around seven years old like me - not seven MONTHS old.

Madeline has a mad crush on Matt Lauer.

We started to notice it a few months ago. In the mornings she’s fussy, but the second she’d hear Matt Lauer’s voice, she would stop whining and turn her whole body toward the sound of Matt joking with Meredith. We’ve even recorded The Today Show on our DVR so we can play it when she’s especially wound up. It works every time.

Hilarious photos of Maddie follow, so be sure to continue reading…

{Originally Published on Lizzie’s Home}

When I was nineteen years old, I found myself taking a front-row seat in an honest-to-God, wish-I-could-bottle-that-feeling miracle.

After a twenty-eight hour labour, an ugly, red, scrawny mess of arms and legs was twisted from my body, four weeks before his due date. The conehead my son sported from his prolonged journey down the birth canal was very pronounced and truly awesome to behold. His Apgar scores were low. He was whisked away for some oxygen.

At that point, I didn’t care where he went, as long as he was being cared for appropriately and I could cover up the bits of my person that in any other circumstance would never be displayed. It is amazing how the most prudish of women can become the most liberal when in the throes of childbirth. There were bits of me that were irreversibly altered by the birthing process but in the end those particular battle scars would fade, and new ones would take their place.

On the second day after his birth, J turned an alarming shade of buttercup yellow which had the doctors scrambling for the big scary humidicrib with fancy lights and cords. You know, the type with holes in the side where distraught parents are permitted to insert only their hands to stroke babies they should, by rights, be cradling in their arms.

My little six-pound-nothing imp modelled a hastily cut blindfold of black vinyl almost every moment of the first week of his life. We were allowed to remove him from the phototherapy unit for feedings and changes only. The rest of the time he was to lay naked and sunbathing, save for his Zorro mask, under special lights designed to speed up the expulsion of the bilirubin from his blood. There’s a reason why babies are meant to be covered up. Meconium poops are legendary, and more so for babies undergoing phototherapy…

{Originally published on Hope4Peyton}

I lost a child already.

When I was 21, before I met Peter, I miscarried a baby that I hadn’t even known that I wanted until the moment the choice was taken away from me. My first instinct was to get rid of that baby, that I wasn’t ready, I wasn’t prepared. I spent days planning to make this inconvenience go away. Then the clarity came that I might never BE ready for a baby, but I had one now and I was going to do my best to be a mother. I told the father. I cried when I told my mom. But I was sure I was making the right decision.

Three days later I lay in the hospital, as the child I was just starting to anticipate was lost to me forever. I cried tears from a place inside me I never knew existed. I mourned the baby that was never to be in my arms. I spent weeks laying on my bed, unable to make myself get up, move, bathe, want to live. I felt the most incredible guilt I think a person could feel because I knew in my heart that I had wished that baby away in my days of uncertainty. And now it was gone.

I spent years waking from dreams of a crying baby, me wandering halls, searching frantically for that child. I spent months unable to even bear looking at a pregnant woman or a baby snuggled in its stroller. My best friend had a newborn and I was angry and resentful that she got to have her baby. There aren’t words to describe how I felt after my miscarriage: devastated, destroyed, incomplete.

And this was a child I’d never even seen. Let alone cuddled in my arms. I’d never stared into its eyes, felt it’s silky skin against mine, soothed its cry with the touch of my lips to its brow. I still grieved for that child with every fiber of my being.

{originally published on Because I’m The MOM}

When I started this blog I wanted it to be about my family, one of whom has special needs. What I didn’t want was a Special Needs Blog. I realized though, that to ignore Thomas’s story altogether means that there are things I can’t say because they wouldn’t make sense. So here you go.

When I got pregnant with Thomas I was considered high-risk because I was 36. My ob-gyn suggested that I have the 11-week Nuchal Translucency Test. No problem, I thought, this just goes along with being a little older. I have to say though, that every time someone said “advanced maternal age” within earshot I wanted to smack them sideways and shout “I’m not FIFTY for God’s sake. I’m 36! I’m YOUNG.”

About 2 minutes into the test I saw the sonographer’s face go still and she got very quiet. Not a good thing. She summoned the doctor, a very kind man with a very serious face, and he told me that there was a 50% chance there was something genetically wrong with my baby. Probably something like Down’s Syndrome. My husband and I were devastated, of course, and thus began my running of a veritable gauntlet of tests for the next 24 weeks. The thing is, EVERY SINGLE TEST came back normal. Chorionic Villus Sample? Normal. Multiple in-utero echocardiograms of Thomas’s heart? Normal. Ultrasound after ultrasound? Normal. The doctors were elated, but deep inside I knew there was still something wrong.