Archive for the ‘Maddie’ Category

One of my dearest friends, both on the internet and in my real life, Heather, is facing an especially painful day this week. On Friday, her oldest daughter should be celebrating her 4th birthday, but instead, this is the 3rd year in a row where they will be without her. The difficulties Heather and Mike face every day are far greater than any I’ve ever known.

I find myself constantly wishing that there was more I could do to comfort my friends in their tremendous loss, and this year they’ve come up with a way that we all can help a little.

Heather and Mike have recorded a song, one that Mike wrote, and they’re selling it on iTunes. All the proceeds from the song will go to their incredible charity, Friends of Maddie. FOM is an organization that creates and distributes care packages for parents whose children are in the NICU like Maddie was. It has helped a huge volume of families and it’s something that I support whole heartedly.

I do not ask for much from you, but if you have a minute and a dollar, you can help Friends of Maddie carry on their mission to help families with babies fighting to live after a rough start in life. The song is beautiful and the cause you’re supporting is even more so. I hope some of you will consider buying it this week to honor my friends and their beautiful daughter Maddie.

To learn more, go to Heather’s site and read about You Are The One.

To purchase the song on iTunes, click on the link for your country:
USA
Canada
Australia
New Zealand
UK
Mexico
Japan

It can also be purchased through Amazon, Spotify, Medianet, eMusic, Zune, Rhapsody, VerveLife, Nokia, Napster.

I hope you’ll consider donating a dollar to this wonderful cause. And that you’ll join me in sending love and good thoughts to Mike, Heather, Annie, and their families this week and always.

I’ve always been able to remember dates. It’s kind of a gift. I know the birthdays of almost all my family members, I know the dates I met and began dating my husband, I remember times that others sometimes forget. And tomorrow is one such remembrance.

Tomorrow marks two years since Maddie passed away. It marks two years since a woman I’ve come to know and love lost her daughter. Two years that a family has been broken and trying to rebuild. Two years of tears and anger and occasionally celebration. Two years that I’ve wanted nothing more in the world than to take a piece of my friend’s grief, or her husband’s or her mother’s or her father’s and give them a break. Two years that I’ve watched people I love fight to understand, to grow and to remember.

I’ve grown to love Maddie’s family as if I’ve known them my whole life. I’ve never felt more loved by people I’ve just met than in the presence of Heather and her family. They spoke to me as if we were old friends, they offered support without question, they’re just that kind of family. And that makes it even harder to watch them fight time. To watch them fight to move forward while clinging desperately to things they can’t forget.

I’ve spent hours with Maddie’s little sister, Annie. I’ve attempted to help her learn to crawl, I’ve let her chew on my phone, I’ve searched high and low for a binky to help her take a cat nap on the floor of her living room. I held her while she finished a bottle and then yakked said bottle up on my only pair of jeans. I’ve watched her grow from a tiny infant who drowned in the tiny Saints onesie I forced on her mother right before last year’s Superbowl, to the toddler who scales gates in a single bound.

I know this family. I love them deeply. And that’s why I’m writing.

I’m writing because I want them to know that I haven’t forgotten. I remember Maddie, even though I never met her. I remember things about her that her mother wrote long before we were friends. I remember stories she’s shared, pictures she took.

I remember.

I remember a child who had eyes like oceans, deep and wide and full of mystery and wonder.

I remember a child who enjoyed life, who smiled easily, who laughed often.

I remember a child who fought to catch up, who fought to grow.

I remember a child who loved music and her dog, but hadn’t yet decided on a baseball team.

I remember a child who inspired people all over to donate thousands of dollars to help children just like her.

I remember.

Two years ago, Heather and Mike and their families experienced something that no family should. They had to say goodbye to a child who had just begun life, a child who had so much yet to learn, yet to experience. They put on brave faces and rally people to help others, even when they don’t feel strong or brave. They are the strongest people I know, even if they don’t know it.

Two years ago my friends’ lives turned upside down. And I remember tonight, just as I will for years to come, a child whose life was short but powerful. I remember a little girl whose love inspired others. I remember Maddie whenever I see trees with purple flowers or a vibrant purple sunrise. I remember her when I see little girls with curls playing in parks, when I look at my own niece who was born just one month before her. I remember Maddie, not just today, but always. Because she is a child who cannot be forgotten. Whose story needs to be told over and over again.

And I hope you’ll join me in remembering Maddie and in sending love and strength to Heather, Mike and their families today and for days to come.

Later this month I’ll be walking with Heather and Mike in the March for Babies. The March of Dimes provides support and conducts research to help prevent and treat complications of prematurity. Please join us by participating in a walk near you, or by donating.

I’m struggling to write today. I want to write something meaningful, something important. But my heart hurts and the words aren’t there.

My friend Heather and her family, who I love and adore, are facing another milestone. Another marker of their new lives without their daughter, without their granddaughter, their sister, their cousin. Without Maddie.

Anyone who has ever had a good friend hurting knows that there just aren’t words for these kind of situations. There isn’t a protocol, a precedent. You see the hurt that hides behind the strong facade, but there’s never anything you can do about it.

I’ve watched Heather and her family, a family that has welcomed me to family dinners, to tailgates with warm, welcoming arms, hurt for 18 months now. There’s almost never a day that goes by that I don’t think about them. That I don’t wish there was something I could do to take just a little of it away, to shoulder a fraction of their burden, their pain.

But there isn’t. I can’t bear their burden or carry their pain.

So instead I sit here, at my computer, teary eyed thinking about them, trying to find words that might give comfort.

I am, and I imagine I always will be, inspired by Maddie.

That little girl, the one I never met, drives me each and every day. Last week someone asked me why I want to go into pediatrics and I couldn’t answer them. I mean, I like kids, I want to help them, blah blah blah, but it’s just…more complicated than that.

Because the truth is that I want to know kids like Maddie. I want to help children who have beat the odds, who have fought more in their first few months than I have ever fought in my whole life. Who face adversity in every breath they take. I want to help them succeed, help them have the normal, easy lives they deserve, that they have never known. Help them to catch up and be just like their peers, only, I think we all know that Maddie was never like her peers. She was so much more than just normal, she was incredible.

Tomorrow, November 11th, is Maddie’s birthday. A day that should be filled with celebration and presents. With a thousand pictures and a purple cake. Or with cream puffs, if she still liked them. Tomorrow is supposed to be another celebration of how she defied the odds, of the little girl who proved everyone wrong, the little girl who inspired people everywhere.

Tomorrow won’t be the celebration that it was supposed to be. It can’t be. But tomorrow is still special. Because 3 years ago a tiny little girl came into the world, and it was never the same again.

A little girl who changed people. Who changed me.

I wish there was more I could say, better words that would help with this hurt. But there aren’t.

So I’ll just say, Happy birthday Maddie. I wish you were here.

I remember exactly what I was doing a year ago when I clicked over to Heather’s blog to see how Maddie was doing. Heather had sent a panicked tweet the night before about Maddie being intubated and I was worried. I hardly slept that night and to be honest, I felt a little bit crazy. Who worries about a child and a family they’ve never met?

A lot of people, as it turns out.

And then I typed in the blog address and read. And reread. I stared in disbelief, hair straightener in one hand, the other hand steadying myself on the counter. It had to be a mistake. I refreshed the page, foolishly thinking that it might change the words that were written on the page. It didn’t.

And then I cried. And cried and cried. For a little girl and a family I didn’t yet know.

Since that day last April, I’ve met the Spohrs. I can tell you a hundred times and you’ll still never understand how entirely lovely and generous these people are.

And I know, beyond a shadow of a doubt, without ever having the pleasure of meeting her, that Maddie was just like her parents. She was loving, kind and generous. You didn’t have to meet her to know that, all you had to do was read her mother’s words, hear the testimonies of the people who loved her. She was special.

In some ways this year has flown by. I can’t believe how much has happened, how much has changed. And in other ways, it seems impossible that it’s already been a year. I sometimes don’t know how the world can continue to turn, how people’s lives can just go on without that little girl in it. Somedays the reality of that boggles my mind.

In the year since she left this world, Maddie has done more good than many of us will do in our lifetime. She is the basis of a charity that is helping premature infants and their families. She’s had over $100,000 donated in her name to the March of Dimes. She turned the internet purple, she opened the hearts of people everywhere.

And I think that’s Maddie’s legacy. Not just her bright smile and beautiful eyes. Not just her sparkling personality. Her short life reminded us to be good to one another, to take care of those who need it. She proved to us that it doesn’t take a loud voice to make real noise, to start real change. She reminded us to hold onto those things that are precious to us, that life is imperfect, but worth every moment of it we have.

I don’t know how we’ll make it another year, or a decade or 10 more without her here, without hearing her voice, without seeing her run around the room and bestow toddler kisses on her baby sister. I don’t know how any of us who have been changed by Maddie can imagine a world without her in it. Or how we’ve lived a whole year in that upside down world.

I have learned so much from the little blue eyed girl I never got to meet. I don’t know if it will ever be easier to be where she is not, to be in this world that someday seems so entirely wrong. But until then, I take her lessons with me everywhere I go. And I carry her memory, her smile, in my heart always.

Rest in peace Maddie. Thank you for changing my life.

I’m proud to be walking with Heather and Mike in the March of Dimes later this month. If you’re interested in donating to Maddie’s team, click on the picture on the sidebar to the left. Every dime helps.

Today is Maddie’s 2nd birthday.

Today, Maddie should be entering the phase of tantrums and misbehavior and mischief. She should be running around the house with sharp or forbidden objects and hiding from her mom and tormenting her dog. She should be mesmerized by Elmo and Abby Cadabby and Dora the Explorer.

But she isn’t. Because Maddie will never get to be a 2 year old. She’ll never get to throw a terrible-two style tantrum, or play with toys with small parts. She’ll never get to meet her baby sister and try to smother her for stealing the spotlight. She’ll never get to be the big sister that she was born to be.

Today, Maddie should be waking up to a big pile of presents. To bows and boxes and an Abby Cadabby birthday party. She should be overwhelmed by the shower of love from people near and far. She and her mom and dad should be spending this day, her last birthday as an only child, together as a family.

But they’re not. Because 7 months ago, Maddie’s laughter was quieted. 7 months ago Maddie’s family’s world was turned upside down. 7 months ago, Maddie passed away.

And so today, instead of Maddie awakening to a celebration, the rest of us wake up with a heaviness of our hearts, with a profound silence that her laughter used to fill. There are no presents, there is no party. This day is not what it should be.

And we are left to wonder how this happened. How we live in a world where children can die and the world can keep turning. Where a mother, my dear friend, can watch her beautiful daughter slip away and be unable to fix it. Where we can even contemplate living the remainder of our lives when hers is over.

Today I mourn for Heather and Mike, for their families. And I mourn for Maddie. For the things she never got to experience, for the day today should’ve been for her, for the wrongness of life right now.

Madeline Alice Spohr touched lives around the world. She raised over $100,000 for the March of Dimes. She inspired a charity. She did a lot of things, but most of all, she loved and was loved deeply and by more people than she ever could’ve known even if she lived to be 100.

And that love is what we have left today. That love is what brings us together. That love is what we have left of Maddie, what we have left for Maddie. It may not seem like much, but it is powerful.

You all know about my love affair with cake. And for some time now, I had planned to go to a bakery nearby and get a small purple cake for Maddie’s birthday. It just seems wrong to not celebrate today because this tiny girl was special and so is this day.

Two years ago the world met Madeline Spohr. Two years ago she fought against the odds and beat them.

Tonight I am not eating cake, because that’s not how Maddie would’ve been celebrating today. Tonight, I am eating Cream Puffs.

In celebration, in honor and in memory of Maddie.

(Picture stolen from Heather’s flickr stream)

Happy birthday beautiful girl. You are loved, you are remembered and you are missed.