Archive for the ‘Maddie’ Category

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.