It’s been so long since I last wrote on my blog. My mind and body have been tired. I’ve needed to rest and do some soul searching over the past couple of years. After my husband had a cardiac arrest, I dealt with insurance, credit card companies and PTSD. I needed some time to breathe.
I made some significant changes in my life. I got off social media, I began listening to people like Brene Brown and David Brooks. I wanted to delve in to more of my behaviors, reactions to situations, friendships and a long standing feeling of aiming for more. What more did I need? What was I missing? How come I wasn’t filled up in my heart?
I found that once I stopped posting on Instagram about my life, I felt like I was living more of my life. I wasn’t taking the photo for the feed, I was taking the photo because I wanted it for me. This is no dig on people who post and enjoy the social media aspect of things, I admire those who can make it work. I just didn’t feel good about it anymore. Cutting it out wasn’t easy. It’s like taking sugar out of your diet! Ugh. But, it was beneficial for my mind and soul.
My friendships. God, I love my girlfriends. I am so fortunate to have life long friends. One of my oldest friends is from when we were 7 years old and swimming together at the YMCA. We have been through some truly gnarly times. Divorce, kids, health scares, etc. We had a time where we didn’t speak, but got back together because we realized we both loved each other and had to grow up and make some changes. It felt so good to make amends and to admit our faults. We now get to watch our kids play, laugh, fight and hug it out.
My other best friend is from college. We met our Junior year and have been friends ever since. She now lives in New York with her 3 kids and we get to fly out and see them this week! We know the deepest, darkest things about each other and can laugh our asses off over just about anything. We cry/laugh on the phone, send text messages, make fun of each other and put each other in check when need be.
I’m one lucky woman to have a handful of friends like this. Women who know me and have supported me for the last 30 years of my life. I’m not interested in the bullshit of small talk with people anymore. I love engaging and getting to know another human, but if you’re putting on a show, posting all your posh clothes/cars/shoes, etc., I’m just not that in to you.
Brene Brown talks about vulnerability. How being vulnerable is a sign of strength, not weakness. I hope to show people my vulnerability (when appropriate) and to learn about theirs. We all have so many damn feelings, shame, grief, desires, yet we don’t share them. What’s the fear? Anytime someone has opened up to me about any of the feelings above, I’ve always felt more connected to them. It makes me want to share more with them. To let them have a glimpse in to my soul.
The last couple of years I have grieved a lot. The fear of my sons heart condition is always right under the surface of my skin. The fact that I had to perform CPR on my husband and medevac him home, not knowing if he would make it. Putting my first dog Lucy to sleep last year and questioning if there’s anything after this life? So many questions. So many thoughts. So many feelings. Today, I’m so grateful for those feelings. I don’t want to push them aside. They’re relevant. They’re what make me who I am.
I’m beyond grateful for my kids, Sirous and Zara. These two blow me away daily. They are strong willed for sure! They are both well traveled, voracious readers and inquisitive. They have a zest for life and it pulls me out of myself at times. They are so optimistic and excited about what’s to come. They’re not jaded by the experiences I’ve had. I look to them to remind me that life is filled with a lot of exciting things. I am reminded of how telling a silly joke can make someone laugh. How a gentle kiss on the cheek can make my kids feel loved and special. My son Sirous asks me about his heart while we are in bed. He wants to know what would happen if they didn’t replace his pulmonary valve? Would he die? I get to be honest, cry and hug him. He in turn hugs me and says, “Mom, I love you too much.” I asked him what that meant. He said, “I love you more than my threshold.”
I could go on forever, but I’m going to end with this, I love my life. I love my friends. I love my husband, Zara, Sirous, my parents and all the other people who have shown up and not judged our journey.
I haven’t wanted to write for a long time. I have experienced trauma in my life on multiple occasions, but the experience we had in Mexico was more than I could have ever expected.
Our trip started out in beautiful Playa del Carmen (45 minutes outside of Cancun). We were greeted by the staff at Banyan Tree Mayakoba with fresh drinks, cool towels and a golf cart ride to our villa for the week. We had so many exciting things to experience while we were in Mexico.
We explored several cenotes (natural sinkholes), went zip lining, took a tour of Rio Lagartos (which is literally in the middle of no where), had a mud bath, renewed our wedding vows after 10 years of marriage and climbed to the top of Ek’ Balam where you are breathless from the beauty.
Our Mexican adventure had been picture perfect. The people were kind, the weather was perfect and the kids said this was the best trip they had ever taken. We were so relaxed, laughing and eating fresh food every day. My husband Barry said, “I could do this every day.”
Then life had its own ideas. On the morning of September 1st at 3:30 a.m. I heard Barry gasping for air in his sleep. I said, “Barry! Barry!” There was no response. My gut was all twisted and I knew something was terribly wrong. I immediately dialed zero for help and ran up the stairs of our villa to open the door for someone to help us. My kids were sleeping in the room next door and I was having an out-of-body experience.
I ran back to the bed where Barry was non responsive. I checked for a pulse and there was none. I tried to open his mouth and his jaw was locked down tight. His eyes were vacant. My heart was screaming. I immediately began CPR and started telling him, “You will not die on me! You will not!” As I was performing CPR two men from the hotel came down the stairs and tried to get Barry to respond. They had no such luck. They took over for me and began very aggressive CPR.
The hotel Dr. was called, the paramedics were called and they all took a very long time to arrive. While my husband was laying on the ground unresponsive, my 2 children came in to the room and asked, “What’s wrong with daddy?” I said, “Daddy is sick and needs help.” I proceeded to take them to their room with Ipads and headphones. For all the times I curse these devices, I was grateful at that moment.
While the men at the hotel were taking turns doing CPR on Barry, someone in the resort brought an AED Device (Defibrillator). The gentleman (Abdiel, our angel from heaven) applied the pads to Barry and the device indicated he needed a shock. After the shock, Abdiel continued CPR until the paramedics arrived.
Once paramedics arrived I was still in flight or fight mode. I immediately got all our passports, money and phone chargers. I knew I was in for a long day ahead.
The staff at Banyan Tree Mayakoba stayed with my kids while I drove in ambulance with Barry.
While driving to the hospital I started making calls to my husbands colleagues (Barry is an Anesthesiologist). I let them know what’s going on and asked them to guide me through this process.
It’s unbelievable anyone survives in a place like this. The facility in Playa del Carmen is woefully insufficient. When we arrived they immediately asked me for money. Just over $6k. My mind was racing and I gave them whatever they asked for. However, I was very aggressive in figuring out what was going on and how we were going to get Barry the hell out of there.
Let me be clear, there was one Physician at this hospital. One!! They did an EKG and it indicated Barry had a heart attack. My next question was, “Do you have a cath lab?” Which he replied, “No, we don’t have one here. He will need to go to another facility, but we must wait for the cardiologist to come see him.”
Barry was non-responsive and I was freaking the fuck out. I demanded a transport immediately. I knew Barry needed to be at a better facility. This place was where people were left to die. When the next ambulance came and drove us 45 minutes toward Cancun, I felt like I was in the twilight zone.
At this point one of my best friends was booking her airline ticket to come to Mexico. She needed to get my kids. My other best friend was working on a Medevac service to get Barry out of Mexico. I was calling my mom, friends and Dr.’s back home, asking people to pray for Barry. I prayed, “Please God, don’t make me a widow. Don’t let these kids grow up without their Papa. They need him.”
When we got to the next hospital in Cancun, Mexico I had no idea wha to expect. It was slightly better than the last facility, but sub par compared to anything you would find in the US. Once I walked in the first thing they asked for was….drum roll….$30k!! Yes, you read that correctly. $30k for Barry to get in to the hospital. Having already talked with my mother, I asked her to call Amex and have them blow open my card for this medical emergency. Thank God they did.
He was intubated, given a CT scan, taken to the cath lab, had a chest tube placed since he had a pneumothorax (collapsed lung) due to the CPR and 3 broken ribs (also due to the CPR). He was still non-responsive and I had no idea if he had any brain damage or would ever wake up again. The Dr.’s at this facility were rude, unresponsive and arrogant. Horrible! Horrible! Horrible!
All the while, I was making plans to get my children out of the country. I had to have my neighbor back in the US go in to my house, get my kids birth certificates, email them to me. I then sent them to my friend, who forwarded documents to US Consulate in Mexico. I had to physically drive to US Consulate and notarize documents so my friend could leave the country with my children. The kindest American woman who worked at consulate said, “Whatever you do, get your husband out of these hospitals.” I told her I was on it and that was my number one priority.
With all hands on deck, my friend in New York secured a Medevac service to come get Barry. At 1:30 a.m on September 2nd the transport team showed up to transport him back to the US. This was an additional $30k on credit cards and worth every single penny. The team who flew in from Guadalajara was professional, bright and helped me feel some bit of hope. This was most certainly not the way I wanted to experience my first private jet experience.
We took a flight from Cancun to Houston, where we dealt with customs and refueled the plane. From there we arrived in Orange County where we were immediately taken to Hoag Hospital.
Barry spent 8 days in the CTICU, he had a defibrillator placed (permanent device implanted under his muscle), underwent many tests and was determined to have suffered Sudden Cardiac Arrest (SCA).
What has this experience taught me? Shit….so many things. I don’t even know where to begin.
I am eternally grateful for knowing CPR and having been CPR certified. Having a child with #chd prompted me to learn CPR. I never thought I would be using it on my husband.
Keep your head about you in moments of crisis. Barry has always told me that chaos creates chaos.
Have all your documents in a place people can easily access for you in case of an emergency. That was key to getting my kids home!
You can blow open your credit card limits in a medical emergency. Amex was very helpful and has been kind as we wait for any medical reimbursements.
If you go to Mexico, expect to pay through the nose for anything and everything medical. They know they’ve got you by the balls and will charge you whatever the hell they want. Also, know they have inadequate facilities and poor communication. Even the staff from our hotel who guided me while dealing with medical staff were mortified by the way their system operates. We need not ever complain about medical care in the USA!
I look at life very differently after this event. In my travel experiences I have never encountered such a horrific event. I may have had a cold on an international trip, but nothing like this. I will ALWAYS know where hospitals are located, find out how hospitals take payments, travelers insurance, etc. I also will not take my family to any country that doesn’t have a sufficient healthcare system.
There are kind people everywhere. We were blessed by so many helping hands in Mexico and back home. I owe my husband’s life to Abdiel, who was sweating while performing CPR and didn’t give up on Barry! I owe Edgar, who sat with me for almost 24 hours and drove me to US Consulate. I owe my friends who tirelessly made calls, got on flights and showed up! I believe in the human spirit and kindness.
I love my family from the bottom of my soul. I truly understand the meaning of “just for today.” I’ve had so many emotions over the past couple of months. Grief (heavy grief), fear, sadness, joy, gratitude and I find myself asking, “Why?” I just can’t wrap my head around it. I’m tired. I’m emotionally spent. I sometimes feel I can’t take one more traumatic event in life. People say, “You’re so strong.” I say, “I’ve had no other choice.”
The days of summer can be long with two kids who have very “large” personalities, love to antagonize each other and have inquisitive minds. There are no more camps, one last vacation to Mexico before school begins and I’m trying to keep exploring with my little people.
Living in Southern California, there is always something to explore. The weather is usually close to perfect year round, the beach is down the hill from where we live, there are cultural events, museums and a vast art community near by.
One of our annual summer traditions is to go to The Sawdust Festival in Laguna Beach. The festival features over 200 local artists who display their art, jewelry, photography and blown glass. The grounds are easy to walk around. Great food options for the entire family (think Mexican, burgers, sandwiches, ice-cream, beer). It has a sort of hippy vibe, typical of Laguna, with sawdust on the ground and people drinking beer and dancing to live music.
I love seeing all the vendors work on display. We have picked up several pieces of art over the many years we have attended the festival. Before kids we used to walk around for hours, talking uninterrupted with the locals and listening to music all night. Well….times have changed! Leisure time is non-existent. That’s not a complaint, it’s just the reality.
Today the kids got to paint, dance to live music and make ceramic bowls and vases. They also indulged in some much-needed ice-cream and popcorn. Watching them today reminded me of how quickly time is flying by. There was a time not long ago where I had Sirous in a baby bjorn on my chest while walking around. Today, he’s his own little man who wants his own independence and no longer wants to come in to the women’s restroom with me. Ugh!
Then there’s Zara. A strong, vibrant, sometimes shy little girl. She doesn’t put up with crap from Sirous, but loves him with all her being. The two of them are thick as thieves. I am fascinated watching them interact, especially because I didn’t have any siblings. It amazes me how quickly they can go at it and then the next moment they are hugging as if nothing happened. I wish we all had this type of forgiveness in our hearts. Their love reminds me that I can be harsh and critical of people, instead of kind and compassionate. It’s one of my character defects. I guess being aware is the first step. I’m obviously a work in progress.
Part of what prompted me to write today was dealing with the struggles of being a parent in our highly competitive culture. Navigating through the journey of teaching my kids to be citizens of the world, letting them be who they are (not who I want them to be) and societal pressures. How much TV should they watch? Should they be in Kumon? TKD? Chess club? What level should they be reading at? How many chores should they have? With social media and all the “picture”perfect images of all the kids seemingly being the next Einstein, it’s a lot to take in sometimes. You also have the parents I call “One Uppers.”
1) They make sure to let you know in every conversation that their child is doing XYZ and making gourmet meals for the family at seven years old.
2) I had a woman tell me her daughter knew the entire alphabet by 12 months old, even when she knew my son had had 2 open heart surgeries by that age and was behind in virtually everything he did. The fear and doubt that this created in my new mom head at the time was a lot for me emotionally. I wondered if he’d ever catch up or be where he was supposed to be. Well, guess what lady, I’m giving you the middle finger. He’s all that and then some. (See, my character defect has come out again….)
When I feel myself getting anxious or competitive, I am so grateful I get to verbalize it and not keep it in my head! I don’t need or want my kids to be robots. I don’t need them to be these perfect students who don’t think outside the box or read at 5.2 level in 1st grade! Can everyone just take it down a notch?
I long for my kids to thrive in life, be excited about learning and loving! I long for them to be critical thinkers, contributors in society, kind humans and to have some sass. I want to be ok if my child decides to be an Arborist or Musician as opposed to a Doctor or Lawyer. I want to allow them to be their own unique person. So, that means I need to work on me being my own unique person. Not getting caught up in the academic game, or the look at me game or my life is perfect game. Let me tell you, my life is FAR from perfect. Dang! If only the world could see a glimpse of everyone’s imperfections, I think we would be much more compassionate and sensitive.
I hope some of you can relate to this post. I’d love to hear any feedback about how you struggle as a parent and what you’re doing to alleviate some of the pressure. We are all going to be ok!
Yesterday, I got to spend the entire day alone with my son. No sister vying for my attention. Just the two of us, cruising around Lido Island. We walked along the docks, popped in to all the shops, met the owners, had lunch at Zinque and sat down in a quaint bookstore called Lido Village Books. As I watched him stroll the streets with confidence, greet people with a handshake and ask me a million questions, I had a glimpse of the man he would become. I felt myself holding on to the moment so tightly. I wondered how much longer he would hold my hand as we walked? How many more times would he allow me to kiss him all over his face in public? Caress his hair as we sat down? I try not to get too far ahead of myself, but sometimes my heart beats out logic.
I also get that crazy mom thought of, “No woman will love you the way I do.” But one day, someone will love him that deeply and I assume I will accept that.
Until then, I am relishing in the moment. Loving him so hard, showing him bits and pieces of the world, watching his mind grow and enjoying the little boy he is today. I love you my warrior!
Just over 7 years ago my husband and I were told at our sons birth he had a grave cardiac defect called Tetrology of Fallot (TOF). He would need open heart surgery (OHS) within the first month of life, a second OHS at 8 months and his most recent surgery at 6 years old. If you’ve ever experienced having a sick child, I am here to say, I am sorry. The grief and sadness are very real. The complete devastation, isolation and depression can be too much at times. I struggled at every turn after he was born. I felt as though I could break down any moment. My emotions were just under the surface of my skin. When I would share about our journey, I felt as if a layer of me was being peeled away. I could feel the emotion rise up in my throat and I would will myself not to cry. At times I couldn’t control it. The tears and grief would just flow out of me like a child who lost a parent.
When my son was about 1-year-old I discovered Hopeful Hearts Foundation, started by my now dear friend Terra Chez. Terra and her husband Adam started the foundation after the loss of their daughter Gracie. I picked up the phone and called Terra. When we finally spoke I felt a huge sense of relief…someone understood my pain. Someone validated me. Someone listened. The heart journey was just beginning.
Through Terra, I met an entire world of heart families. Parents whose kids had different cardiac defects than Sirous. Parents who lost children and somehow managed to wake up in the morning and persevere. Parents who knew what it was like to sleep in a hospital chair for days on end to make sure their child knew they were present. Parents who questioned if their child would lead a normal life.
I found my people.
By allowing myself to be vulnerable, open and honest I met my “Heart Mom Squad.” We have been through some gnarly sh*t together. Rachel, Cecile, Danielle, Christa and Terra, you are my blood, my heart and you feed my soul.
Together we have walked through over 20 open heart surgeries, the loss of 3 children, cardiology appointments, many nights of laughter, crying and by God, fun! We’ve danced at dive bars, eaten some fantastic food, shown up at hospitals, delivered care packages, done spin at SoulCycle and hugged a lot.
Through it all we get to be ourselves. Completely and utterly flawed. Thank you for allowing me to know you. I wouldn’t want to walk this road without you all by my side. You will always be my Heart Sisters!
Often times I take for granted where we live. I drive by the ocean every day, see tourists so excited to explore our shoreline, yet I don’t walk along the beach enough. My kids seem to be the inspiration to get the sand on my feet.
Tonight after eating at our favorite Indian restaurant, Natraj, we walked down to the sand and watched the sunset. The kids chased the waves, I snapped photos and my husband was watching while we laughed and played. They give me gentle reminders to stay in the moment, enjoy the gifts and laugh a lot!
On the way home we sang songs, talked about our next adventure and discussed why we need the ocean to stay clean. I love these nights.
One year ago July, my son Sirous had open heart surgery (OHS) to replace his pulmonary valve. For his cardiology appointments we head to UCLA to see his cardiologist. In an effort to create an experience that’s not only health related, we decided to make a weekend out of it.
Even though Los Angeles is only about 45 minutes from our house, we decided to get a hotel, explore the vibrant street art of Venice and have dinner in Beverly Hills. What kid wouldn’t want to do that? What adult wouldn’t want to do that?
When we arrived in Venice (Abbot Kinney) we had a spectacular meal at The Tasting Kitchen. The waffles with bacon inside, fried chicken spiced perfectly and the hand crafted beverages were to die for! It has a hip vibe, but not so much you feel put off. After filling up on brunch we headed out to the streets. Just walking up Abbott Kinney you feel like you’re in a different world. The art, the shops, the crowds. It’s a damn fun time! The wall I wanted to see was The Love Wall. It felt symbolic of our trip and I’m a sucker for anything heart related.
As you continue your journey on the street there are walls with animals, musicians and faces. It’s like being at an outdoor art museum! It was fantastic taking pictures of the kids, seeing all the locals and checking out the thriving coffee/food scene. I also like that you’re not in the hustle, bustle of Venice Beach. We got our Venice feel without being slammed by too many tourists.