Save the Heartbeat Gala

A few weekends ago, AJ and I had the honor and pleasure of attending the inaugural Save the Heartbeat Gala benefiting the Hopeful Hearts Foundation. This event was put on by another heart mom, Danielle, who’s son Remington, only 10 months old, has undergone two open heart surgeries and four brain surgeries, as a result of his first heart surgery. You read that right. Over $100,000 was raised!

This was our first “heart event” since Luca passed away, and I’d be lying if I said I wasn’t hesitant to attend. Sometimes it’s hard to know where I fit in and, quite frankly, it doesn’t always feel like the heart community is it. My reality no longer includes heart surgeries, oxygen sats, coagulations, hospital talk, and the like. And I think it scares people who are living with sick children, just like Luca, to hear about their worst nightmare being realized, which happens to be our new reality. I can’t blame them. However, Danielle did an outstanding job of honoring both children who have passed away as well as children who are thriving.

gala3These are all the heart parents in attendance. We were given pins with a little red ribbons to identify us as such, and other attendees were encouraged to talk with us and ask us about our children. Do you know how many people asked us about Luca? I got to talk about him the entire night and didn’t have to feel awkward for one second because I wasn’t the one who brought him up.

IMG_3484Meghan and Josslyn, two other heart moms I talked with multiple times before Luca was born and finally got to meet. Josslyn is Charlie’s mom. I reached out to her because I found out she delivered at the same hospital as I was going to and therefore had a similar birth experience. You might remember that I was not fond of my experience and I was pretty anxious about the hospital. Charlie has completed two of the three staged surgeries, and is doing well. Meghan is Lawson’s mom, and she actually reached out to me after hearing of Luca’s story. I got to share everything with her. Lawson has completed the first of the three staged surgeries and is also doing well.

galg10Proud parents of Lawson, Luca, and Charlie.

gala2Large photos were on display of each child represented at the event. This was very cool to walk in and see.

IMG_3482-1And honoring the sweet children who are no longer with us. Gracie, on the left, is the daughter of Adam and Terra, the founders of Hopeful Hearts and of course our sweet baby Luca.

gala11Each table was named after a child who was honored at the event. Here we are at Table Luca. Each place setting had a 5×7 card with all of Luca’s facts on the front, like what his condition, the surgeries, whether or not diagnosed prenatally, etc. The back included his story. So many people got to read his story and see his face. I cannot explain how wonderful this was for us.

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Would ya look at this?! We never get to attend anything together because of AJ’s soccer schedule.  We were excited to spend the evening together at such a wonderful event, supporting a wonderful cause, and talking about Luca.

If you know someone who has lost a child, I would encourage you to reach out to that person. If you find yourself thinking of that child, let his or her parents know. Mention the child by name. Doing so will not be some shocking reminder that their child is no longer here; they didn’t forget their child died.  What you’re reminding them of is that someone remembers that their child lived, and that is a great, great gift.

We spent the entire night talking about Luca, sharing his story, having people ask us about him, seeing his face everywhere, and connecting with other people who have shared the same or similar journeys. That alone was incredibly healing.

So, Danielle, if you’re reading this, thanks for the work you did. Not only did you help raise a ton of money and awareness for children like ours, you provided a source of healing for my husband and me. For that, we are thankful, and we are excited to be apart of this in the future!

Check out the Hopeful Hearts Foundation when you get a chance. Adam and Terra have a wonderful story to share about their three children with serious CHDs. What they’re doing for families like ours is special.

National Wear Red Day // Friday, February 6th

goredTomorrow is “National Wear Red Day” to raise awareness for America’s #1 killer: heart disease. Further, Congenital Heart Defects are the #1 killer of all children, more than all childhood cancers combined, yet the research is grossly underfunded. 1 in 5 children with a CHD will not make it to their first birthday. We are that 1 in 5.

We love and miss you so much, Luca!

Rethinking My Own Heart Health.

I often look at pictures and watch videos from my time with Luca. I just finally updated my iPhone and now have the feature in my photostream where I can see the dates, times, and location of each picture taken. I can relive my entire week with Luca down to the minute. This is heartbreaking and heartwarming at the same time. I remember the most minute details of each day, like what my thoughts were in the shower, how I slept the night before, whether or not I wore mascara, what I ate that day, or if I even went to eat. I remember the smells, the nurses on the duty, who I heard from on any given day. It’s oddly strange how comprehensive my memory is, but how much of a blur that week really was.

I am thankful to have so many pictures from my short time, but I’m sad that they’re all I have. And, as a result, I find myself staring at different pictures longer than usual, just studying the details and going back to that place in time.

As you know, when Luca was first born, he was taken immediately to CHLA and into surgery. I was over recovering in the maternity ward in a separate hospital. AJ would send me pictures and updates via text. I just found that I took a screenshot of the text of the first time I really saw Luca. The first time I saw the baby that I carried for 9 months, who was taken away from me instantaneously. Just a text.

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The first time I saw Luca was after I feared he died. In this picture, you can see the red sticker on my sleeve. Everyone in CHLA had to have a badge of some sort, and because we were taken in through a backside entrance in a rush, we were just given those emergency stickers. Our representative grabbed it for us and stuck them on us on the way up in the elevator. I remember her yelling at the people at the desk that she would come back for those stickers, that we had no time to waste. Security gave her such a hard time.

I was discharged from my hospital on the fly. They put me in a wheelchair at my hospital to wheel me over to CHLA, and security was giving us such a hard time about taking the wheelchair. MY BABY’S HEART STOPPED BEATING…and they were worried about someone “stealing” a wheelchair. Our representative fought that battle for us, too. (Rosby – if you’re reading this, thanks for all you did for us.) You can see in the picture that I have tape on my left hand. That’s the IV port from my hospital. I was still attached to everything when I left. My doctor gave me instructions over the phone on how to take care of myself and my incision, my medicine schedule, etc. I had seen my OB just once after a c-section. I had to even sign papers acknowledging that I was discharging early against medical advice. Anything to get to my baby. I just can’t believe how fast I got out of the hospital. I also can’t believe how strong the body really is. What it can do and handle in a time of fight or flight.

Those two red tubes coming from Luca’s chest, they pumped blood to and from Luca’s body. Have you ever thought about what exactly the heart does and how important the heart really is? Don’t worry, I never did until being forced to understand it’s function, and fearing it’s lack thereof, became my reality.

February is a month recognized for heart health awareness. My reflections of my short time with Luca remind me of the importance of my own health…health that I most often take for granted.

This month, I would challenge you to seek the benefits of your health. To understand how your body works and acknowledge what an honor it is to have just that: a body that “works”. Challenge yourself to go for a run or make a healthier food choice.

We would love to see your heart healthy choices. Or any heart for that matter! Use the hashtag #LucaKnowsHeart to share. I’ll be showing my heart for Luca all month long.

Thanks for following along.

February 7-14: CHD Awareness Week

Friends,

Please take a moment to sign this petition to nationally recognize February 7-14 as Congenital Heart Defect Awareness Week.

I used to pass over this kind of stuff all the time because I never thought it would affect me. Here I am now with my entire world flipped upside down.

The staggering and heartbreaking stats are listed on the website. You lived through our triumphs and through our heartbreak with us. Please help us honor Luca’s memory by raising awareness.

https://petitions.whitehouse.gov/petition/nationally-recognize-february-7-14-congenital-heart-defect-awareness-week/Lq612tQ0

2014 forever.

On this day last year, I was boarding a plane home from a nice vacation at a beautiful resort in Jamaica. I was wrapping up one of the happiest, most fulfilling years of my life. I’ve always been a hard worker, but I taught myself a whole lot about motivation and ambition that year. And, on the eve of the new year, I said I was looking forward to being more ambitious in 2014.

Shortly after returning home to LA, I found out I was pregnant. We were so excited. I knew better than to wish the whole year away, but I couldn’t wait until September to meet my baby. Life was perfect. We were having a little boy, named him Luca, and he would be here in time for the MLS post-season, so he could even get a few games in this year. Plus, lots of my girlfriends were pregnant at the same time, with due dates only a few weeks apart for me. I was looking forward to the little group of friends that would be, minis of their daddies, all running around on the field post games.

Fast forward a few months and we find out Luca would be born critically and chronically ill and his outlook was grim. But, each appointment thereafter would prove miraculous is some little way. Luca would always show us something unexplainable by his doctors that suggested otherwise. And though we knew the reality of Luca’s situation, we held onto hope. And we were rallied around by friends and family, and even hundreds of people we don’t even know, for support during our days of waiting.

When Luca was born, he was sent straight to have his first open heart surgery. 14 minutes after to be exact. While most new moms are having skin on skin time with their babies, I was praying that I’d get to mine while his little heart was still beating. My first images of my baby were pictures sent to me by AJ. The first time I met my baby, he was laying on a bed, entangled in wires with a big patch on his chest that said “open sternum”, attached to a machine acting in place of his heart and lungs. I had just had a csection 28 hours prior and was wheeled out of the hospital screaming, thinking my baby was dead.

We spent a very special week with Luca. And that’s it. Just like that, it’s been four months since that week. Luca is forever just one week old.

And here we are now. Exactly one year later, and I’m about to board a plane back to LA, reflecting on the year I had. This year went a lot different than I could’ve ever imagined. I experienced ambition in a whole different way that I dreamed. Ambition to find light in my darkest days.

Why would I ever want 2014 to end? It’s when I learned I’d welcome a new baby into the world. It’s when I felt my baby rumbling around in my belly, safe and sound. It’s when I experienced becoming a mommy. It’s when I held my son. It’s when I kissed my son goodbye, forever. A new year means there’s more distance between Luca and me. A painful reminder that time is moving on without him.

So, in 2015, I’m still looking forward to experiencing more ambition. Ambition to live and love with a full heart, things my son never got to experience. Ambition to grieve and heal. Ambition to be the best version of myself.

Though the days are long, the years are short. And until I get to hold my sweet Luca in my arms again, I’ll carry his heart. I’ll carry it in my heart.

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Family + Football: The Luca DeLaGarza Story by MLS Insider

From MLSsoccer.com:

AJ DeLaGarza knew what he wanted to name his unborn son, he just never imagined that name would bring together an entire soccer community.

The latest episode of the Emmy-nominated MLS Insider series offers an emotional and candid look DeLaGarza and his relationship with his son Luca, who passed away shortly after he was born in September. Luca’s fight to stay alive and his eventual passing galvanized Major League Soccer like few events in recent memory, launching the #LucaKnowsHeart hashtag and eventually culminating in an emotional moment of silence at the StubHub Center in the first game after his passing.

Click here for more on Luca’s story and how to donate to the Childen’s Hospital of Los Angeles, and don’t miss the rest of the MLS Insider series, including past episodes on Real Salt Lake mighty-mite Joao Plata, Chivas USA star Erick “Cubo” Torres and the rise of Sporting Kansas City star Graham Zusi.

>>Watch the episode here

Letters to Luca

I write daily letters to Luca, but last night I got to send one all the way to Heaven, among 20,000 other lanterns, at the RiSE FESTIVAL.

WATCH HERE

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RiSE elevates hope, ignites dreams, and creates memories you will never forget.

It’s a centuries-old idea that’s both simple and powerful. Thousands of lanterns, each representing a hope, a dream, a new leaf, or a forgotten wish coming together to form something beautiful. Your lantern means something unique to you. But together they give a collective voice to our dreams and challenges in a beautiful display—and one unforgettable evening.

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More Info: http://www.risefestival.com
Photo Credit: www.jenrobin.com