Shortly after learning of Zoe's diagnosis, in utero, I went straight to the internet. I researched HLHS and found other heart moms online. Through the wonders of Facebook, I met a handful of heart moms close in gestation and delivering at the Children's Hospital of Philadelphia. Before we actually met in person, Mia's mom, Jenn and I felt like we already "knew" each other. As our friendship grew, so did Mia and Zoe's...they just didn't know it yet.
Mia was born on April 29, 2010. Zoe was born on May 11, 2010. Both born with one functioning heart ventricle. Mia, the older of the two friends, led the way. She underwent her Norwood first and set the bar high, very high. Mia was a "rockstar" at CHOP. She recovered in record time (no joke) and discharged in 3 weeks time.
After Zoe's surgery and discharge, Jenn and I communicated often (via email, texts, phone, you-name-it.) Heart mommy support knows no boundaries!
Growing up as a child with only half a heart was not going to be easy. Jenn and I realized that, and hence, Zoe and Mia's arranged friendship was born. Mia and Zoe were already being booked for Florida beach vacations and annual trips. We knew they'd need each other as they grew and faced similar experiences. They were destined to be BFFs.
On July 25, 2010, Zoe lost her friend. I met Mia on more than one occasion, but Zoe never had the opportunity. Sure, they laid in the same hospital just a few hundred feet from each other; but they were busy battling HLHS.
The day I heard the news of Mia's passing is forever etched in my mind.
Can you imagine your best friend dying? It's heart-breaking to even think about. Someday, I'll have to break the news to Zoe that her friend, Mia, died, just shy of her 3 month birthday. Despite this, Zoe will know Mia and will grow to know her twin brother, Madden.
Many of you know of Mia, or have seen this picture of Zoe, honoring and remembering Mia on her 3 month birthday, just 3 days after her passing.
Mia's parents, Jennifer and Ray Marrone, have made it their mission to continue Mia's fight and fight for Zoe and all other families affected by congenital heart defects. They've founded the Mia Marrone Heart Foundation. One of their first, of many accomplishments, is the Mia Marrone Heart Charm. Mia's Charm is a beautiful reminder and awareness piece for heart families and those affected by CHDs. Zoe already has hers which she loves (and apparently they taste good too.)
Zoe (and I) will wear Mia's Charm with pride - to honor and remember Mia and all of the CHD angels and warriors.
If you love the Mia Charm as much as we do, you can check it out in detail through The Mia Marrone Heart Foundation, print an order form here or by emailing a request to HLHS.HeartHugsForMia@yahoo.com if you do not have a Facebook account.
And a few more from Zoe's photoshoot...
And, of course, all of this, in remembrance of Mia Grace Marrone. We miss you little one.
LOVE this post - as usual, you are a master with words! And love the pic of the necklace on Zoe's head - hysterical!!!
ReplyDeleteTears!! I love this post ... because I lost my best CHD friend at 9 when she was 11 years old ... she had the same type of defect as I do and she ended up passing away ... I'm so glad that Zoe will always remember Mia in her own way ... just as you'll remember her for what she was ... a strong, beautiful, little warrior ... I'm buying the charm as well ... to wear it in honor of my special friend :) <3
ReplyDeleteprecious.
ReplyDeleteStacey this is absolutely beautiful. It brought me to tears. I love you both so much and your sweet baby girls. Mia will live on forever through our voices and in our hearts.
ReplyDeleteLove the photo shoot!
Stacey, you are such a talented writer! In my department at work we have an empty cubicle where our signs are still up from our photo shoot "In memory of Mia Grace". Though I didn't know her, and I look forward to meeting Zoe, your HLHS warriors (and their parents) never cease to amaze me. I received my Mia charm last week and wear it with pride!
ReplyDeleteExcellent article with a wealth of information and motivational writing. Keep going. A vision disease called color blindness that typically runs in families makes it difficult for a person to perceive color normally. To the rescue, comes these color-blind glasses. Visit the article on special glasses for color blind to learn more.
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