Wednesday, November 7, 2012

Sonny, our Heart Warrior.

This is a hard story for me to put into words, to share the depth of emotion that goes behind this child and this family.

Erin Maniscalco is a strong woman, and one of my closest friends.  From the beginning, I watched in awe as she took in stride the knowledge that her unborn son had a congenital heart defect and would have to undergo open heart surgery as a newborn.  And again later, as an older infant.  We were pregnant at the same time -- her baby boy due in January, mine in early February -- so to see her go through this was inspiring, humbling, and heartbreaking.

I remember listening to Lincoln's first heartbeat and crying.  It was just this sudden rush of tears I didn't even realize were coming.  I remember being pregnant and thinking, "Man, I hope nothing happens."  I remember going through the ultrasounds and being reassured that everything looked "great" and "perfect" and "normal."  Even with my high risk pregnancy and all the crazy bleeding and bed rest that occurred with it, the ultrasounds were reassuring.  "The baby is developing normally.  We can't figure out why this is happening to you."  I know we've all been there.  Even if you have no signs of any problem, you go into the ultrasounds scared, wondering if there is some sort of bad news.  You can't help that little worry at the back of your mind; what if? what if?  That's part of being a mother.  That's part of being pregnant.

For Erin, it ran a little different.  I can only imagine what she felt when they first discovered her unborn son's congenital heart defect.  And even my imagination pales, I'm certain, compared to the feelings she had that day.  And ever since that day.  Despite that, she thrived in her pregnancy, and she gave birth to the sweetest little boy.  We call him Sonny.

From the beginning, Sonny was a fighter.  He had his first open heart surgery in February, when he wasn't even a month old.  He had his second in July, 6 months old.  And on November 3rd, 2012, 9-1/2 months old and recovering amazingly after his surgery just a few months prior, he suffered a sudden stroke at home.  He was medevaced from his local ER to Children's Hospital, where he is right now, recovering, with his mother and father by his side.

Here are some pictures, words, and snippets his mother wrote, just to share this sweet little boy and their joys and struggles.  Her words are more eloquent than any I could ever, ever write:
February 10, 2012:  Saw that beautiful chest the way I made it, for the last time today.
(The day I saw her write this on Facebook, I cried.)

February 14, 2012:  Today is not only Valentine's Day but it is more importantly to me National Congenital Heart Defect Awareness Day.  If you know me then you know a person who has a child with a congenital heart defect. My son's heart is missing it's lower right chamber, and as I write this I am sitting at his bed side at Children's National Hospital as he recovers from a surgery that is the first of several to help mend his broken heart. I have seen him through so much in this past month. I have witnessed his silent cries with his ventilator tube stuck down his throat. I have held his tiny hand as he suffered through endless IV sticks and blood draws and wound dressings. My child's heart is broken. But by the dedication of countless doctors, nurses, specialist, by the love of his family and by the grace of God, he is alive and getting stronger every day. So this Valentines day isn't just a day to celebrate love and get candy or jewelry or cards or a fancy dinner. For me, today is a day where I celebrate the LIFE of my son Lawrence Michael Maniscalco for being the most heroic 1 month old boy I have ever met. He is my tiny hero, my Superman. He is my CHD Valentine.

February 23, 2012:As these past few weeks have gone by it felt as if I would never see him do it again...the hours I have spent at his bedside, stroking his fuzzy head, comforting him, talking softly, singing gentle lullabies, still I have seen in his face, his pain and discomforts, sometimes an exhausted sleep. He is getting better every day, slowly the pain is becoming less and less for him.
Tonight, during our bedside chat as I am telling him for the hundredth time how handsome he is and how brave he has been and how proud I am and how much I love him. I gently run a finger down the bridge of his nose...then I see it, a little flash...I think to myself "was that what I think it was?" quickly I stroke his nose again...nothing, I tickle his chin and, yes there it is! A Smile. I can't help but tear up at the beautiful site! My baby boy smiled for me tonight. :)

There are donations being collected for him and his family.  All proceeds go to their medical bills and food, gas, etc during his hospital stay.  His family has a 2-hour commute to the hospital and a 2-year-old they need childcare for during their visits to the hospital.  They are missing work to be there at their son's side, which means money lost.  To a family already struggling, this is a lot to bear.

If you find it in your heart to donate, even $1 can snowball into hundreds.

Please -- keep this boy and his family in your heart and prayers.  Share his story.  And even if all you can do is pray... Please pray for Sonny and his family.

You can donate here.

Or, Tutus by Lafue is running a promotion where all proceeds of their red Heart Awareness tutus go to Sonny's fund, for the entire month of November.

And, Pirate Kids by Mkraz22 is donating 5% of all sales (at full price, not sale prices) to Sonny's campaign for the month of November.  These include custom designs.  Thank you so much!

For updates on Sonny, to keep in touch, and to easily share his story, please visit his support page on Facebook.


  1. I miss being one of your closest friends :( And that pity party is over...For the actual child who deserves our love, sympathy, and action...I shared his page on my google+ page...Constant vigilance! Right?

  2. I will never understand why god puts childr through the health issues he does,but i think its to see if the doctors use the smarts that god gave them.but i wish the bad adults went through itbthen the children ofbgod.ple look over an take care of sonny he will always an for ever be in my heart.sonny god bless u an god will look over u an make u strong every day