The Newborn Identity

Maddie’s Day

2009-11-11T08:03:41Z

Today is not a day to be angry at God
Or to mourn the lives we will never lead
It is not a day for asking why
Or avoiding the places we used to go

Today is not a day to fill with distractions
Or to spend pretending all is okay
It is not a day for jealousy
Of fathers and daughters laughing in the sun

Today is to celebrate you
My sweet, perfect, wonderful Moo

Your head on my shoulder

Your beautiful smile

The good in your heart

The pride in mine

The love we share

Deeper than any distance

Happy Birthday, Maddie.

November 11^th will always be a happy day because it was the day you came to me.

Different

2009-09-15T05:34:34Z

When I was ten or so my cousin died in a scuba diving accident in Australia. I remember going to my aunt’s house and seeing a cardboard package sitting on the counter that the mailman had just delivered from the Australian government. It held my cousin’s remains. As I looked at it I couldn’t imagine what it must have been like for my aunt, and from that point on things always felt different around her. Everyone could be laughing and having a great time, but if a scene featuring scuba diving came on the television, or if there was a mention of someone passing too soon, a tension could be felt in the room. Though everyone would try their best to continue laughing and smiling, what happened was never far from anyone’s mind.

A few years later the sister of one of my junior high classmates died in a car crash. When my classmate returned to school I couldn’t imagine what she was going through. Sometimes I would end up behind her in the lunch line and we’d chat a little. As we exchanged pleasantries, however, I couldn’t stop thinking about how she had lost her sister. I wasn’t the only one who felt this way. I remember a rowdy assembly where a number of kids addressed the school, and each had to speak over muffled heckles and scattered chatter…that is until the girl whose sister died stepped to the microphone. Then there was perfect silence. When she finished and started off the stage, the chatter and heckling returned. As with my aunt, things with this girl were now different.

Until the events of April I still couldn’t imagine what people like my aunt and former classmate went through. Not anymore. Now I am the person that causes a hush to fall when I enter a room, now I am the one who is the recipient of sad smiles and forced gaiety, and when there is a mention of parenting or a child who passed away, I can feel the tension fall over those around me.

It’s okay though. I understand it and don’t expect anyone to act any differently. I acted the same way, and really, there is no other way for anyone to act. Things are different. I am different. My life is different.

Flowers and Candles

2009-09-09T06:05:25Z

Yesterday I wrote a song inspired by Maddie and recorded it on my iPhone.

Flowers and Candles

Flowers and candles on the side of the road
Flowers and candles on the side of the road
I used to drive right on by
But now they make me cry
Because I’ve got flowers and candles in my heart

Flowers and candles fill a child’s empty room
Flowers and candles for one taken too soon
I never knew what this world could do
But after all it has put me through
I have got flowers and candles in my heart

In my heart, in my heart, in heart for you

Flowers and candles to the end of my days
Flowers and candles to remember and praise
I never knew what this world could do
But after all it has put me through
I have got flowers and candles in my heart

And they’re always growing
And they’re always burning
To show my love for you

They’ll be always growing
They’ll be always burning
to show my love for you
My love for you

In my heart, in my heart, in heart for you

In the Club

2009-08-20T05:42:26Z

I wanted to thank everyone who has left comments on my site since Maddie passed. I haven’t been the best at commenting back the last few months, but all of the advice, kind words, and sympathy has meant the world to me.

It has been a few weeks since I last posted because I’ve been in the doldrums, even more so than usual. A large reason for this is that grieving is just so exhausting. It never stops. Minute after minute, hour after hour, day after day…the pain is always there. If for just five minutes I could walk around without the knowledge of what happened to Maddie weighing down upon me I think I could deal with everything a bit better, but I can’t.

Yesterday I watched a documentary on HBO called “Boy Interrupted,” which was made by the parents of a fifteen-year-old boy who commited suicide by leaping out of his bedroom in their New York apartment. The film is very interesting because the boy was bipolar, and the parents, despite being able to afford the best psychiatrists and special schools, couldn’t save him. Adding another complexity to the situation is the fact the boy’s uncle committed suicide when he was twenty-one, so the boy’s mental illness may have been genetic. While you don’t have to have lost a child to appreciate the documentary, it doesn’t hurt.

I particularly related to a couple statements in the documentary. The first was made by the boy’s paternal grandmother who lost her son, then, thirty years later, her grandson. She said, when asked to describe what it is to lose a child:

“I can’t tell you. Words don’t exist to tell another person how destroyed part of you has been…they just don’t exist. I can’t tell you, but I’ll tell you this – it is something you never recover from. Life goes on but not the way you wanted it to and not the way you planned for it to, but you don’t recover, I don’t think.”

Later her daughter-in-law, when discussing the loss of her son, said:

“The thing I think about the most is…I can’t believe it. I can’t believe this. I can’t believe I’m sitting here. I can’t believe I gave birth to this boy, raised him…buried him. I can’t believe it. It’s just a sense of disbelief. I don’t know if I ‘ll ever really understand that it’s true that this really happened. I can’t believe it really happened. Tell me it’s a dream. I can’t believe it, and I can’t believe that the days continue to go by and that the world could choose to rotate without him.”

They say when you lose a child you become a member of a club no one wants to join. That much is true, and the words spoken above capture a truth the members all know well.

Interestingly, in reading about the film online some reviewers wondered how anyone could document the death of a child on film. Those same people, I’d imagine, would question how anyone could write a blog after losing a child. The reason we do this, I think, is because those of us in this horrible club have an intense desire for people to understand what we are going through, to give them some glimpse into the reality of what our lives have become.

Otherwise it is too lonely carrying around all this grief all day, every day.

Predeceased

2009-07-31T07:54:07Z

In the days following Maddie’s passing I began reading the LA Times’ obituary section - for reasons a grief therapist could explain, I’m sure - but never stopped. I continue to read them to this day. I do this not to be morbid, but because I enjoy reading people’s life stories. It is amazing how someone’s entire life – triumphs and failures, family and friends - can be encapsulated into just a few paragraphs. Instead of being depressing, however, obituaries can be uplifting as they show just how much value each person’s life had.

At least that is how I look at them on a good day.

On other days the obituaries DO depress me, especially when I read one that includes the word “predeceased.” ”Predeceased” is used in reference to a spouse, sibling, or child who died prior to the subject of the obituary, as in: ”Mr. Jones was predeceased by his wife Mildred.” Yesterday it dawned on me that this word would be used in my obituary. Despite the fact that no one’s obituary is written until the day they die, part of mine is.

“Predeceased by his daughter, Madeline, Mr. Spohr…”

There is nothing I can do to change that. I could live to be a hundred, sell more records than Michael Jackson, even become the first person to live on the face of Mars, but my obituary would still include:

“Predeceased by his daughter, Madeline, Mr. Spohr…”

Sometimes it is so hard to stay positive, to forge on as everyone says I must. Part of my life is over and already been written into my obituary even if the rest hasn’t. All I can do, I guess, is to try my best to ensure that the parts of my obituary yet to be written aren’t as sad.

Reverie

2009-07-29T06:35:24Z

That face.

How I miss that beautiful face.

Today was one of those days when the sheer horror of what happened was front and center in my mind.

“My daughter is dead,” I would think. “My daughter is dead.”

The preceding is a sentence that, no matter how many times I say it, always sounds foreign and unreal to me. It’s like saying ”I am the President of the United States” or “I have won an Olympic Gold medal.” It just doesn’t seem like something that could be part of my life. But it is.

I realize I have yet to write here about Heather and my pregnancy with Binky, but that is because it is hard to know how to express all of the feelings I am having. Don’t get me wrong…Heather and I love being parents, and we are both looking forward to having a child in the house again, but the more I think about having a child again the more it makes me wish that child was Madeline. Madeline is who I want to be playing with, kissing and hugging, teaching about the world…

This makes me wonder if I will be able to love this new baby as much as Madeline. I think I will, and have been told by friends that you love all of your children the same amount, but right now it seems impossible to love another child the way I love Maddie. And that scares me. The last thing I want is to become some psycho like Johnny Cash’s father who told him “the wrong boy died.” I can’t see myself saying something so hurtful, but raising this child is going to be far more complicated than it would be if Maddie had never passed.

A good example of how complicated things will be is trying to figure out what to tell this baby when he or she asks who Maddie is. This question will come long before he or she understands the concept of death, so what do you say? She is your sister but she doesn’t live with us? How is that not going to freak out a kid?

This isn’t the life I ever thought I’d have, but it IS real. Somehow I am going to have to find a way to live it the best I can.

So Far Away

2009-07-27T08:13:54Z

Heather and I had been dating less than a year when we took a trip to Chicago in 2003 to check out the Windy City and catch the USC/Notre Dame football game. We had a great time and pledged to return one day, but we never could have imagined the circumstances that would eventually bring us back. Back then we were carefree twentysomethings quick to laugh and have a good time. This trip found us weary thirtysomethings attending a conference where Heather would be speaking about the loss of our child.

The prospect of traveling so far away on this trip had us a bit nervous as we hadn’t ventured too far into the world since April 7th, but we were quickly put at ease when we met up with many of our fellow bloggers and headed East on the “party plane.” Once at the conference we met even more awesome people, many of whom had been so supportive of us through all of this. It was so great to meet in person so many of our new friends.

While Heather was hitting the seminars during the day, I set out on my own walking about the city. I visited a Blues museum and what I call the “Married With Children” fountain:

I ate a Chicago style hot dog:

Then met up with one of my best friends from high school who now lives in Chicago and took in a Cubs’ game at the legendary Wrigley Field:

Later I had fun back at the hotel/conference…I ate deep dish pizza from Gino’s of the East with the Super Secret Pizza Party/Tweet and Eat crowd…went bowling at BowlHer…and even was allowed to gossip with Heather, Megan, and Maya late into the night as if I was at a slumber party. I couldn’t have felt more like one of the girls if we had painted our toe nails and had a pillow fight.

While we definitely had a lot of fun, it was also a hard trip. Toward the end of the conference we overheard people mentioning how excited they were to fly home and see their children, but for us our flight home brought us no closer to seeing our little girl again. The gift shop at the hotel was full of the kind of souvenirs kids go crazy for, but I had no reason to buy one even though I desperately wanted to. In the last few months before Maddie passed she would get so happy each night when I came home from work, and I just know she would have been ecstatic to see me return from a trip with a present for her.

Sometimes it is not being able to do the simple things, like buy your daughter a present and see the smile on her face when you give it to her, that hurt the most.

Sigh.

Wherever you are, little girl…daddy loves you so much.

Friends Of Maddie

2009-07-16T15:22:59Z

After we lost our Madeline, we didn’t know what to do with our lives. Everything we did, we did for her. Our lives, once focused on our wonderful daughter, were adrift.

Too devastated to plan our child’s funeral, our friends did it for us. So unprepared for the financial burden of paying for it, thousands of people from all over the world made contributions big and small to assist us. There was more donated than we needed.

So what to do with that extra money? We knew right away.

Today we are proud to announce Friends of Maddie, a non-profit organization we’ve started in honor of Madeline. Friends of Maddie supports families of critically ill babies by easing the transition into NICU life and providing an ally until the end of their child’s hospital stay.

Our time in the NICU was so frightening, lonely, and overwhelming. As Maddie’s parents, we can think of no better way to honor her memory than to help other families in her name.

We ask that you please help support other families the way you so kindly supported us. Please visit Friends of Maddie to learn how you can help. We’re kicking things off with an amazing giveaway!

Thank you all, from the bottom of our hearts, for making this possible.

Mike & Heather Spohr

Sixty Seconds

2009-07-08T07:08:55Z

“I would give anything if I could have just one more minute…”

The above is something the bereaved often say. Personally, I have always found it to be a silly statement…after all, what good is a minute? Three of them pass in a commercial break, sixty in an hour, nearly fifteen hundred in a day. A minute is so fleeting, in fact, that forty-two million of them expire before a person reaches their eightieth birthday. Clearly, a minute is nothing special.

“I would give anything if I could have just one more minute…”

What a silly thing to say.

At least that’s what I used to think. Today I realize that, as quickly as a minute may pass, it can be the most valuable thing in the world.

Lately I have begun to fantasize about what it would be like to have one more minute with Madeline. In my fantasy I imagine Heather and myself sitting on our couches as we do so much lately, absent-mindenly staring at our computer screens, when all of a sudden a few notes echo from Maddie’s long silent little red piano. I look up and see Maddie pressing the keys as she flashes that brilliant smile of hers at me. Heather and I look at each other in disbelief, then throw our computers aside, leap to our feet, and wrap Maddie up in our arms. As we cover her little face in kisses Maddie giggles and says “Wow” in her sweet little voice. Tears soon stream down our faces as Heather and I kiss our baby all over…on her tiny hands, her cute belly, her pudgy little legs…and run our hands through her curly hair. Finally, as the minute winds down to its final seconds, we tell her that we love her and kiss her one last time before she is gone once again.

As silly as it may sound, I would give anything…absolutely anything…to have that minute.

Worry Spohr-t

2009-06-16T05:55:42Z

I have always been a bit of a worry wort. The other day, for example, I saw a man walking his dog without a leash and immediately felt sick. What if the dog took off into the street and got hit by a car? Or suddenly was attacked by a bigger dog? The owner, I’m sure, would tell me to relax, but even a well trained dog can get startled or run into some bad luck. This is why I make sure Rigby – an admittedly not so perfectly trained dog — always wears a leash in public no matter how safe her surroundings may seem. This amuses Heather, but I don’t care. I don’t want anything to happen to my pup.

I was the same way with Madeline. Often I carried her around in a baby bjorn which was something she loved because it gave her the opportunity to see the world from a higher perspective. No matter how secure she may have seemed in the bjorn, however, I always kept one hand on the front of it. I was worried that a strap might break and little Maddie would go tumbling to the ground. The odds of this happening were very small, I realized, but I was worried nonetheless. It didn’t matter how many dudes with babies in bjorns I saw at ball games jawing on their cell with one hand and drinking a beer with the other – I always secured Maddie with one hand when she was in the bjorn.

Another time the worry wort in me came out was when we took Maddie on her first airplane ride to Arizona for a weekend getaway to see some spring training baseball. I had Maddie on my lap as we took off, and soon it dawned on me that if we hit some bad turbulence she might go flying up to the ceiling. Despite being exhausted from a long work week, I fought the urge to nod off and wrapped my arms around Maddie. I held her safe and sound until we touched down on the ground an hour or so later.

Sadly, no matter how much we worry about our loved ones or fight to keep them safe, we can only control so much. Our worlds can be turned upside down at any moment. As Maddie’s dad I wanted nothing more than to keep her safe, but it was out of my control. I stood fifteen feet away from my little girl as she fought for her life and there was nothing I could do to save her.

We want to think we have the power to keep our loved ones – our children – safe, but we don’t. Not entirely. There is so much beyond our control. With this said it is easy to understand people who don’t love with all their hearts, because the more you love the more you open yourself up to pain. I can’t live that way though, and if you care enough to come here and read this you probably can’t either.

Scary, huh?

I don’t have any great wisdom about how we can deal with living and loving in a world that can be so cruel. I wish I did.