Friends of Maddie

Always Loved

I sat here for hours with the blank post in front of me wondering what I could possibly write.

How do you tell someone you adore that you’re sorry their precious daughter passed away?  How do you possibly put into words how much she meant to so many people?

A year later and I still can’t answer those questions.

It’s been one year since Madeline Sphor became an angel.

One year seems too long and yet not long enough at the same time.

Sweet precious Maddie, you may be gone, but you will never be forgotten.

Maddie’s parents have set up a wonderful charity in her memory.  The Friends of Maddie works to support parents who have critically ill children in NICU’s.  Speaking from personal experience, it is a vital and necessary charity.

Today, in memory of Maddie, our family will be sponsoring a family support pack through the Friends of Maddie.  I hope others will celebrate Maddie’s life in this way, as well.

You can also get a March for Maddie shirt, (Vista is wearing one in the picture below).  All proceeds support March of Dimes in their fight to improve the health of babies by preventing birth defects, premature birth and infant mortality.

Vista Maddie shirt Always Loved

Follow Friday: Yeah, I Know It’s Sunday

My Follow Friday post was bumped when Vista got scheduled for an early Friday morning CT scan, late Thursday afternoon. This came about after talking to our family doctor about some regression we were seeing since her last seizure. Apparently regression can be a sign of a stroke, so they wanted a scan to make sure that wasn’t the case (and it’s not… the scan is fine as far as we know). Now we’re just waiting for them to schedule an EEG for her, which, I can tell you right now, will also come back normal.

As we pulled up to the hospital Friday morning, though, Vista chirped from the back seat “Oh! The hospital. We go see doctor?”

My heart broke a little. No two year old should recognize the hospital from the outside of the building. No child should know that pulling up to a hospital means a doctor is involved.

And it made me think of all the reasons she’s been to the hospital and all the different doctors we’ve seen there in the past two and half years.

Some of those reasons have been as a result of her brain issues. But a lot have been because she was born to early and the fact that her system just wasn’t developed enough to handle all the things it needed to.

And so this Follow Friday is dedicated to Heather’s Maddie, who was also born to soon. And it’s dedicated to my friends who are walking in Maddie’s memory to raise money for the March of Dimes, so that one day no child will have to deal with endless doctors visits because of complications from prematurity.

  • Messponential - I love Colleen. Her and I talk almost every day, even though we live a country and two time zones apart.  I cried when she told me that this year she’s not only marching for Maddie, but for Vista as well.  If you’d like to support Colleen in her walk, too, you can  click here.
  • Adil320 - Ally is one of my roomies for BlogHer this year.  I’m also dragging her to get inked with me while I’m down there (just don’t tell her husband that I’m a bad influence, kai?).  In addition to Maddie, Ally is also marching for her close friend’s baby girl, Natalie Diana, who was born at 31 weeks.  You can read more about why Ally’s marching, and support her, on her March for Babies page
  • Mom2snk - Meredith and I first met through our husbands (yes, we’re both SharePoint widows).  And in a weird, 6 degrees of separation twist, found out she’s also friends with Colleen.  She’ll be joining Colleen on April 24th in for the Jacksonville Friends of Maddie

If you make one $5 donation this year, I would encourage you to consider the March of Dimes.

mfb logo 174x55 Follow Friday: Yeah, I Know Its Sunday

You Can Be My Hero, Baby

I can remember writing essays on the topics of silly things like ‘Who is Your Hero‘ and ‘If You Could Have Dinner With Any 3 People, Who Would They Be‘ when I was in school.  I invariably took the lazy route and chose someone easy like Madame Curie, Catherine the Great, or Ghandi (yeah, my beauty pageant answer would have been ‘World Peace’…. what’s your point?)

But now, years later, I’m older and (I hope) wiser.  Oh sure, it would be fascinating to have a conversation with someone brilliant like Einstein, or be inspired by the likes of Mother Teresa.  But if I could spend an evening with anyone, it would be little Madeline Spohr.

Beautiful Maddie, who’s smile has inspired and touched so many people.

cake You Can Be My Hero, BabyToday is Maddie’s second birthday.

(Happy Birthday sweet Maddie)

How I wish I could send her a birthday gift to thank her for everything she has taught me.

To appreciate what I have, rather than taking if for granted.

To put down to phone, computer, work, and focus on what’s important – my family.

To be thankful for Vista’s health, my health, Bil’s health.

To never let a day go by without saying ‘I love you’.

So, if someone asked me tonight, who I would invite for dinner, my answer would be Heather and Mike and their darling Madeline.  What I wouldn’t give to be able to allow them one more evening with their Maddie.

But all the wishing in the world can’t make that happen.

What I can do, though, is tell you about Friends of Maddie, a charity founded in memory of Madeline Spohr.  A charity who’s mission is to provide support to the families of critically ill babies in the NICU.

As the mother of a child who was in a NICU and Special Care Nursery when she was born, I will never underestimate the importance of what the Spohrs are doing.

In celebration of Maddie’s birthday, I am asking each of my readers to consider joining me in donating to the Friends of Maddie.  Even if it’s only $1, it still can make a difference.

Today, Bil, Vista and I will be sponsoring a Family Support Pack as our way of saying “Happy Birthday Maddie.  We will always remember you.  You will always be our hero.”

launch purple You Can Be My Hero, Baby

Still Alive

“…Now these points of data
Make a beautiful line.
And we’re out of beta.
We’re releasing on time.”

“Still Alive”
Jonathan Coulton

That pretty much describe what I’ve been up too for the past week or so.

Nic and I have been working like mad on our BlogHer@Home site.  What is BlogHer@Home, you ask?  Well, first you have to know what BlogHer is.  Simply put it’s a community for women who blog. Every year they have a big conference that sells out.  Tickets are coveted, flaunted, and fought over.  This year it’s the place to be if you’re in Chicago on July 24/25.

Well, Nic and I aren’t going to BlogHer.  And that sucks.  Hearing people talk about it constantly was a total bummer until Nic came up with the brilliant idea of creating BlogHer@Home.  So we whipped up a site, and have been working to get our BlogHer@Home gals some AWESOME giveaways (can you say 5 pairs of pearl earrings and a new laptop five times really fast?  No, me neither.  But I do know where you can win both those things for free!)

In addition to keeping all that straight, I’ve been helping Heather and Megan get their Friends of Maddie site up.  This is a wonderful charity dedicated to the memory of Heather’s daughter, Madeline.  Their mission is to provide support to the families of critically ill babies in an effort to help ease the transition into NICU life and to be an ally until the end of their child’s hospital stay.  As a mom of a child who was in NICU and Special Care, I know how invaluable this support can be.  If you have a moment, please take the time to visit and support this important cause.

I’ll hopefully have another post up soon, assuming I can find time to write and be in bed before 1am.

Hugs to you all for all your wonderful love and support.  It really means the world to me.

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