There But for the Grace of God Go I

posted by Momo Fali on April 9, 2009

I really didn’t want to write this post. I’ve sat here, for the past 24 hours, trying to find the right words. I don’t think words can possibly convey what I’m feeling, but I will do my best.

I am a mom of two preemies. My daughter was born during an emergency c-section ten weeks early and weighed just over two pounds. My son was taken from me seven weeks too soon because his congenital heart defect was worsening in utero. He tipped the scales at three pounds, eight ounces.

Needless to say, I have spent a lot of time in hospitals. My daughter stayed in intensive care for her first five weeks of life and my son has had nine surgeries and has been hospitalized numerous times. When he was an infant, if he so much as got a cold they admitted him, partly because of his underlying health problems, but also because he was premature and very, very small. On his first birthday, he weighed just thirteen pounds.

When you have a child who is premature, small and sick you seek out other parents who are in the same boat. Especially those who can still manage to have a sense of humor about the awful situation into which they have been thrust; the kind of people who understand the lingo, and the acronyms and what it’s like to have therapists practically coming out of your rear end.

We know our children’s medical history as well as we know our own phone number…probably better. We know the ins and outs of the health insurance industry, our doctors consider us family and pharmacists become our good friends. Parents of preemies know what it’s like to feed your kid every three hours, round the clock, for their first year just so they can maybe gain a few ounces.

We watch our children fight and claw their way to milestones like little soldiers. We can commiserate and we understand each other, and every now and then we have to help pick each other up…because sometimes all the hard work and struggles of raising a preemie don’t pay off. Sometimes the soldiers just can’t fight anymore.


This is Maddie. She was 17 months old and was still fighting up until the very end, which came day before yesterday. My heart breaks for her parents. Parents who were just like me and my husband up until Maddie died.

We are not in the same boat anymore. My family is sailing along on occasionally choppy waters, while their vessel has been completely overturned.

I am giving thanks that we have been very fortunate and I will hug my kids a whole lot tighter tonight. In Maddie’s memory we will continue our fight. Rest easy, child. Struggle no more. You have fought hard enough.

    Comments

  • Undomestic Diva


    This was beautifully done. And now I’m a mess again.

  • Xbox4NappyRash


    I just don’t know.

  • The Go To Girl


    So beautiful. My heart absolutely aches.

  • AlisonH


    What a beautiful child. What a beautiful post. And what wrenching memories it brings back: of my cousin holding her toddler in her arms as Camille finally let go. Of my sister calling to tell us her son Nicholas had not made it.

    What comes from such experiences, even one step removed like I am from my cousin and sister’s children, is the certainty that nobody should ever have to go through such a loss alone. Thank you for posting about Maddie and her parents, and God bless them.

  • Always Home and Uncool


    Well said. Hope your children (and you) continue to stay well.

  • Heather


    I have been reading of sweet maddie everywhere. it is so heartbreaking. her family will continue to be in my thoughts & prayers.

  • James


    I was previously unaware of Maddies struggles. This is a heart breaking story to hear. Being a parent, I feel so much more for this family than I would have upin hearing this before.

    Just one more reason to give my son extra hugs tonight.

  • Amy @ Milk Breath and Margaritas


    Oh Gosh. I'm new to your blog & had no idea your babies were preemies too.

    Maddie's story has devastated us all. I'm sure you feel it in a way the rest of us simply can't.

    This was a wonderful post.

  • meleah rebeccah


    my whole heart goes out to Maddie’s family.

  • Erin


    I have never read their blog, but finding out about it through blogland I have been sick to my stomach and red eyed all day. I’m so sad for them and their family.

    And I am so happy that your children are fighting the fight and winning. Bless you.

  • amy turn sharp of doobleh-vay


    that was perfect babe. I am sitting here sobbing. Life is so fragile.

  • formerly fun


    I appreciate hearing a little perspective from another mom who’s had preemies. All three of my kids were born big and strong but as a mom sometimes I feel like I walk around holding my breath, just praying that any number of awful things that can happen to children don’t happen to my children. I suspect we all feel this way so it’s so sad when someones kid is taken by one of those things. I can’t even really empathize because the mere thought of the same happening to one of my kids nearly takes my breath away. I know everyone is hoping for the best for Maddie’s family and thankyou for the lovely post.

  • Lynn (Walking With Scissors)


    This was a beautiful tribute. I truly can’t even begin to fathom what it must be like to be in their shoes right now. My heart is breaking for them. As soon as you become a mother, news like this is devastating, regardless of whether or not it’s your own child. 🙁

  • Jenna Consolo


    Heartbreak!

  • Rachael


    What a beautiful tribute to Maddie.

  • Kathy


    Momo, beautiful post. Oh, what heartache I cannot imagine. I had a feeling you were were going to write about Maddie when I saw your post title and first few words. I’ve been reading about her struggle this week via multiple tweets. Too sad for words.

  • Mr Lady


    Damn it, woman, I love you so much it hurts.

  • Lisa@verybusymomwith4


    This is such a touching post.
    Maddie’s story is heart-breaking. You here so well–she can rest easy now.

  • Rachel


    Dammit, DAmmit, Dammit.

    You had me in tears when we talked via e-mail about this, you have me in tears again. I almost can’t read this.

    I adore Heather and Maddie. I had my own scares and yet for some reason, mine went unrealized.

    I believe, without doubt that God chooses his angels very carefully.

    I can’t write anymore, I ahve to go cry, wipe my snot and hug my kids (not necessarily in that order)

    Love more than I’d ever thought possible.

  • Angella


    I am a new friend, and did not know your entire history. I cannot fathom the fear…

    This was absolutely beautiful.

  • Bean


    I have been sitting here, numb, reading about this child and aching for her parents.

    Beautiful tribute, Mo.

  • Aunt Debbi/kurts mom


    Each post I read about this little girl breaks my heart a little more. Makes me want to go hug my boys. Never mind, I am just going to go hug them. Heartfelt tribute thank you.

  • Mrs. Schmitty


    She was such a beautiful little girl. My heart is so sad for her parents. Rest in peace Madeline.

  • Angie


    My prayers are with Maddie’s family. I look over at my preemie, now 18 months old and chubby (thank you, God) and I can’t imagine why I am so blessed when others suffer. I’m going to go hug my baby now and pray that Maddie’s family is comforted as only God knows how to do.

  • Mark


    It is beyond our understanding, however Maddie was here for a purpose, her purpose has been served and we will see her again in another form with yet another purpose to fulfill. Blessings of love to all.

  • Rhea


    I’m so sorry about Maddie. There just aren’t the right words to say when a child dies. It just feels so wrong.

  • Rebecca Anne


    I don’t know Maddies story, but to read alittle one has passed away always breaks my heart.
    Thank you for sharing your story, and your heartfelt feelings about this…words escape me now…….
    Rebecca

  • Dapoppins


    Oh sweetness. I don’t know how…well. Okay, I gotta go cry in my coffee.

    No words.

  • Ann in NJ


    So sad. So often many of us who haven’t had that struggle assume that once the baby goes home from the hospital, everything is fine. A reminder that life is precious and fragile and everyone should treasure every day.

  • Jaina


    I was so sad to hear about Maddie. My heart and prayers are with her family.

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