When your friend loses a child.

This week, I had two very different conversations with two very near and dear friends on the same topic. Me.

I got a card from one friend thanking me for my friendship and apologizing because she felt like she hasn’t been a good friend to me. She admitted wanting to be there for me through the loss of my son, but didn’t know how to support me. She asked if I wanted to talk about, not talk about it, laugh, cry, whatever. She honestly revealed that she had an inner fear of making a difficult time even harder. 

The other friend texted me that she feels like I don’t care about our friendship because she felt ignored and that I’ve lacked effort. I apologized for anything I did or didn’t do, told her it wasn’t intentional, and reminded her that it’s been a tough year and I have a hard time doing much of anything. She informed me that she’s tried to not take it personal but couldn’t ignore the last few months. She gets that I’ve been through a lot, but can see that I’ve changed.

If you’ve taken the time to read this far, please keep going because this is important. There is no timetable to grief, there is no manual on how it’s supposed to go, and there’s no way to understand the situation unless you’ve experienced it. This holds true for all types of experiences.

This pain is something no one should experience. The same goes for the subsequent burden of having to validate it to others.

Friends – please know that I love and appreciate you all. I know you don’t know how to deal with this kind of loss or even maybe how I’ve changed. Neither do I. There’s not an ounce of my being that holds you responsible for that. My only hope is that as you are on this journey with me, that you walk it with patience and maybe a little persistance. 

It’s been 6.5 months since Luca died, and it feels like we’re at a whole new crossroad with reality. It’s hard and it’s painful. Your prayers, support, honesty, love, and patience means more than you know. 

I hope this helps anyone who has a friend going through what we are. 

– Megan

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.


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.



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


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.


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.


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.


letter to lucaphoto-33534

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.








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

A Week with Luca

Luca was born on Thursday, August 28th at 10:35am.  My c-section was scheduled for 9:30am and I was to arrive at the hospital two hours early.  Both my parents and AJ’s dad flew in town for the big day. We were up late the night before as the LA Galaxy played DC United and dedicated the night and game to Luca.  More on that later. We left our house around 6am to get to the hospital in time, but needless to say we didn’t get much sleep with all the excitement and anticipation of meeting Luca.

At the hospital, everything was scheduled to happen on time. I was dressed in my super cute hospital gown (not) and pumped full of fluids. Shortly before 9:30am, I was wheeled back to the OR.  AJ had to wait outside the room while they prepped me and gave me the epidural. The room was freezing and I had these contraptions hooked up to my legs. The room so sterile and I remember seeing the little bed set up for Luca. The anesthesiologist talked to me about the epidural and how I would feel pressure, but no pain. I received a quick shot as a local anesthetic for the epidural, and right before it was given to me, someone ran back into the OR yelling that the OR at CHLA was not ready and to hold off on the c-section. The anesthesiologist was furious – he literally had the needle to my back to give me the epidural. Needless to say, I became a very quick emotional wreck. Why was this happening? The whole point of this scheduled and planned c-section was to have all the doctors and ORs and everything else ready to go for Luca’s arrival. So, they took off all the contraptions, put me back in a regular bed, and wheeled back down the hall to wait.

Once re-settled in a holding room, I was pumped full again with fluids. Just as I was re-situated, CHLA called and said they were ready and I was wheeled back again to the OR. I was reattached to all the contraptions and got the epidural. AJ still wasn’t allowed in the OR at that point. The anesthesiologist told the nurse to expand the IV port in my hand, and that was the worst physical pain I felt throughout the entire process. I was so overcome with emotion that the anesthesiologist yelled that they were going to have to sedate me. I begged him not to because I HAD to see Luca. I got it together and they brought AJ in the room and started my surgery. There were SO many people in that room and most of them were there for Luca.


Luca is in a little bed somewhere between all those doctors.

At 10:35am, my little baby boy made his way into the world, crying and all. What a wonderful and relieving feeling that was. He weighed 6.61lbs, but there was no time to measure his length. I had a wonderful set of nurses who were there for me throughout the delivery. Because we knew that I wouldn’t get to see or hold Luca upon his arrival, one of the nurses took a ton of pictures on her phone. As things would happen, she would show me, and then go take more pictures. So, though I couldn’t see Luca as it was happening, I did see pictures right away. My first thought was wow, he looks just like me.

Once the team of neonatologists got Luca situated and ready for transport, they were off to CHLA with AJ.  As they wheeled Luca out of the room, they stopped by me head so I could get a quick glimpse.  I heard that Luca set the fastest transport record for Hollywood Presbyterian – 14 minutes from delivery to the OR at CHLA. (And the doctors tried to say he couldn’t compete… #winning!) By this time, I was so drugged up and really feeling loopy. My mom came into the OR for the remainder of my surgery. For those of you who know her, she is a saint and does not say bad words, but my first words to her were, “Mom, they’re trying to f*** me up!”. She responded with a quick and loud, “MEGAN!”. Everyone laughed, and apparently I said lots of other funny things, too. I knew the anesthesiologist already thought I was a nut job from my prior meltdown (but who doesn’t meltdown when they get to do almost do a c-section twice?!), and he clearly pumped whatever he had into my IV. No complaints. 😉

While Luca was at CHLA in surgery, I was in recovery back at HP. After a few hours, I was taken to my final room in the maternity ward.  HP set us up nice in a corner unit with panoramic views of LA with an extra room in the suite for my guest of honor – my mom. My dad and father-in-law were back and forth between visiting with me and Luca, but AJ spent most of his time with Luca at CHLA. Shout out to my mom who stayed with me 24/7 – or maybe 23/7, I think she got to slip out to see Luca for a little – and was my VIP caretaker. The next day, I was ready to try to start to walking because I wanted to discharge as early as possible to get over to Luca. I guess I learned to watch what I wish for because I got to discharge early alright.

That day, AJ visited with me for a little bit and when he left to go back to CHLA, he told me that he would FaceTime me with Luca. I spent some time trying to walk and then realized that I never heard from him. I know things are crazy at CHLA, so I figured he just forgot and called him. No answer. I called both my dad and father-in-law, who were both with Luca, no answer. I called Luca’s CTICU room. No answer (and there’s always an answer there). I was getting a little worried, and finally my father-in-law answered the phone crying. I knew something was wrong and I feared the worst. I began screaming please God, no. I thought Luca died and all I could think about was that I wasn’t there with him. I was never with him.

The nurses knew something was wrong and began doing everything they could to comfort me and get me out of there. I had to “officially” discharge before I left… and get myself together. I had just sat up for the first time only a few hours earlier and they had just taken the catheter out (TMI, I know, but that’s how “unprepared” I was to leave). They had the doctor on the phone giving me quick post-surgery instructions and were having me sign all the required paperwork. By that time, my dad and AJ got to my room. As we were leaving, the nurses were taking the IV port from hand at the elevator. That’s how quick the entire process was.

I was wheeled across the parking lot and taken up to Luca’s room. He was still in surgery. Thankfully, Luca did not die, but the next worst possible thing happened – his heart crashed (aka cardiac arrest). There are “Code Blue” buttons throughout the entire hospital and of course in each patient room. My dad was in Luca’s room when it happened. He recalled the nurse, Carlos, pushing the button and a stampede of people running to the room. The CTICU suites are designed to turn into ORs, so they performed surgery right then and there. As it turns out, AJ got to CHLA from visiting me at HP right as it happened. He was trying to be buzzed in through the doors to the cardiac floor with no response. He ended up letting himself in and saw all the doctors running to Luca’s room. That’s why he never FaceTimed me.

Once I got to CHLA, they were finishing Luca’s surgery. Before we went into his room, the surgeon, neonatologist and other nurses came to talk to us about what happened. Luca’s heart crashed and Dr. Nelson gave him CPR. I think she said maybe five compressions. I remember this fact because it meant that brain damage was a very real possibility for Luca. They told us that Luca was put on ECMO, that he had 5-7 days to “get better”, and if he didn’t, then we’d need to make some decisions. The surgeon didn’t think Luca’s prognosis looked too good. I needed to get to my baby.

I was wheeled into Luca’s room with AJ to see him for the first time. There he was, on his little bed with a 3″ chest cavity exposing his heart and two tubes coming out hooked up to a massive machine, the ECMO circuit. He was intubated through his nose with bright orange tape keeping the tubes in place across his face. I just caressed his helpless little body and began talking and singing to him. I sang Jesus Loves Me and he opened his eyes right away. What an emotional moment.


My first time seeing Luca.

AJ and I stayed at Luca’s bedside all day and night. Our dads, “the grandpas”, took rotated for overnight stays so that Luca was never alone. The rest of us stayed at the Ronald McDonald House.  The ability to stay at the Ronald McDonald House was a lifesaver for us and it’s a charity that I now feel a strong calling to support. More on that later. Each day, we’d get a report from Dr. Nelson on how Luca’s night went and what the plan and expectations were for the day. We never really got a “good” report expect for one day. Things never seemed to get worse, but never better. Luca’s kidneys were having a hard time allowing him to urinate and his body just would not release fluid. He was given a ton of fluids and blood transfusions and his poor little body was so swollen.

We had a team of the most wonderful, attentive, and compassionate nurses caring for Luca. Two nurses were in his room around the clock. One at his bedside and the other monitoring the ECMO machine. Luca had daily head ultrasounds to measure the size of his brain to look for possible brain damage. Luckily, he never appeared to have any (which really is miraculous considering he arrested, had CPR, and was on ECMO for so long).

IMG_1025Luca’s CTICU room. The machines to the left are his medications, the machine in the middle is the ECMO circuit, and the machine to the back right is the ventilator. There’s a couch by the window and that door is a bathroom.


Luca getting a head ultrasound. The nurses always gave him a cute combover after all the gel was in his hair.


One of Luca’s best days. When we arrived that morning, the nurses had him set up with the puppy.

On Thursday, September 4th, the doctors decided it was the best time to take Luca off ECMO. His heart showed ability to function while resting (on the machine) and the benefit of being on the machine was starting to be outweighed by the harm. The surgeons were going to do a hybrid version of the Norwood surgery (the surgery Luca was supposed to have at a couple days old) because of some of the work they already did when they put him on ECMO. Dr. Nelson told us she would only come out to update us if things were not looking good. She knew that I needed to hold Luca while he was still alive if things weren’t looking good. I had never had the chance to hold him yet. Sure enough, about 30 minutes into the surgery, she came out and said that his pressures were dropping and he was not going to make it. They cleared the room and brought AJ and me in. They immediately placed Luca in my arms. His sweet little eyes were open for a short time and I just hugged him and sang Jesus Loves Me again to him. His daddy was right there, too. Luca passed away peacefully in my arms at 3:16pm.

Even though this is long, it is really just a brief version of our week with Luca. I often fear that our time with Luca will turn into a faded a memory, and I needed to get down the turn of events of his precious life. Though Luca was on ECMO, which is a form of life support, it is a heart-lung bypass machine. It takes blood from the heart, through a machine to be oxygenated (artificial lung), and goes back into the body for circulation. While on ECMO, the heart and lungs are given a break from supporting the body. That’s why Luca had heart function while on the machine. Luca was still very interactive with us. He opened his eyes when we talked to him, we just had to block the light. He kicked his little feet around and moved his arms. He squeezed our fingers. He moved his mouth and took a pacifier. We were with him around the clock at his bedside, reading to him, talking and singing to him, caressing and touching him, and helping the nurses as best we could.

IMG_1609 IMG_1060 IMG_1365 IMG_1099 IMG_1104 IMG_1081IMG_1123

To my sweet Luca: I carry your heart. I carry it in my heart.

Thanks for reading and continuing to think of and pray for our family.

*** NOTE: We ask that images not be taken or reposted. Thank you for your understanding. ***

Wave of light at 7pm local time


Today is Pregnancy and Infant Loss Remembrance Day. Please join us in the worldwide WAVE OF LIGHT by lighting a candle at 7pm local time. The result is a continuous 24 hour wave of light across the world to honor and carry on the memory of Luca and all the babies who’s lives were lost too soon.

This is something dear to my heart and would mean the world if you could participate. Please feel free to share!