my heart.

Two years ago today, I sat in a small windowless room at The Children’s Hospital of Philadelphia as a pediatric cardiologist, a stranger, sat down and began drawing a picture of a heart. It was my daughter’s heart. It was imperfect. It was broken. I listened as she explained that at some point at the beginning of my pregnancy, my daughter’s heart never finished forming the way it was supposed to. She told me about the surgery needed to fix her little broken heart. She gave me statistics and survival rates and asked if any children in my family had suddenly and unexpectedly died. She probably talked for five minutes, but it felt like an hour. I sat there with my thighs stuck to the plastic seat, trying to take it all in. I tried to pay attention but only heard half of her words. Grace sat beside me the whole time. So there I sat, trying not to cry or scare her. Finally, the doctor explained the logistics of the surgery. She told me that the surgeon would have to saw through her sternum to get to her heart. Then, she said they would have to stop her heart to perform her surgery. This was my breaking point. Fat tears started running down my cheeks and filling up my mask. 

Grace, who had been playing a computer game while we talked, looked up at me and said, “Mommy, am I going to die?” At that point, I didn’t even know how to begin to answer her. I didn’t know what questions to ask, and I didn’t know how to explain this in a way that she would understand. A week before, we celebrated her 7th birthday. She was healthy then. She was whole. Her heart was fine. Now, she was weeks away from surgery and recovery that most adults don’t have to endure. A summer already altered because of a global pandemic would now be filled with medical tests, surgeons, doctors, and lots of time in bed, inside, away from friends. 

Somehow, despite ER visits that included chest x-rays, three bouts of pneumonia, and dozens of visits to the doctor, no one had ever noticed her murmuring heartbeat. Somehow, despite all of the extra ultrasounds due to my “geriatric pregnancy,” no one noticed the large hole in her heart. Somehow, her body, though struggling, had continued to survive. Three weeks after the appointment with the cardiologist, I was sitting in the hospital hallway waiting for the call to tell me that her heart was beating again. Then they called to tell me her sternum was pinned back together. Then, we began the healing process. 

I went through all of the motions of this like a numb machine. Worst-case scenarios swirled through my brain on a daily basis, even when she was “in the clear.” Eight or nine months after her surgery, I found myself sitting on the edge of the bed sobbing, seemingly out of nowhere. I tend to stay on the positive side of things and focus on all the good, but in reality, even though people constantly remind me that she is ok, I have spent the last two years fearing something else will go terribly wrong. The trauma of that day is still with me, and I am allowing myself to feel that trauma and sit with it.

Someone once said that having a child is like having your heart walk around outside your body. When you are told that heart may cease to exist, and she has become your whole world, it feels like a vice squeezing your chest and stealing your breath. Unfortunately, that feeling remains long after the threat is gone and your child is well again. I have learned from fellow heart moms that this is common. We worry about every rash, splinter, or blue lips when our child comes in from the cold. The slightest fever in our child can send us back to that small windowless hospital room where we learned how fragile life truly is. So, be patient with us and know that two or five years still may not be enough time for us to feel okay about what happened. Like grief, trauma is an unpredictable beast with its own timeline. 

“After all, when a stone is dropped into a pond, the water continues quivering even after the stone has sunk to the bottom.”
~Arthur Golden, Memoirs of a Geisha

The repaired sternum

Connect.

I spent the day working with 24 kids at a local non-profit. It was noisy and sweaty and warm. At one point during the day, a 5-year old boy plopped down on the floor and fell back, looking up at the ceiling. His brow furrowed, and tears started to well up in his eyes. I asked him if everything was ok. He shouted, “no!” So, I got down on the floor beside him and asked him what had happened. He sat up and then turned away from me and grunted. I asked him if he wanted me to leave him alone for a bit. Again he shouted, “no!” I then asked, “Do you want me to just sit here with you?” A tear ran down his cheek, he pulled his hoodie up over his head, and he nodded.

For a moment, the noise of the other 23 kids was gone, and it was just me and this kid sitting on the floor in our own little world. We didn’t talk or look at each other. We just sat there. After a few minutes, he looked at me and said, “I can’t remember where my chair is.” I smiled and said, “It’s pretty crazy in here today, huh?” He nodded.  “I’m not sure where my chair is either, but I will help you find yours if you want me to.” He just smiled and said, “ok!” 

This experience reminded me of a moment I shared with my daughter. She had open-heart surgery and was in bed for two days before sitting up and attempting to walk. Walking was one of the things she had to do to leave the hospital, so her physical therapist and surgeon were pushing her to try. She was in pain, and a giant bandage covered her torso. She still had tubes poking out of her tiny hands and oxygen to help her breathe. A monitor was closely recording every beat of her tiny heart. They brought in an x-ray machine to regularly take pictures of her chest, and they were constantly poking her for blood samples. She was on the third day without food. She was tired. She was scared. She didn’t want to move or talk. In the evening, during a rare moment when no one was in her hospital room, she looked at me and said, “Mommy, can you help me sit up?” “Of course, honey,” I said as I slowly slipped my arms under her to gently lift her body. She told me to back up and sit on the sofa in her room. She inched herself to the edge of the bed and slowly dropped her feet to the floor. These would be her first steps with a repaired heart, a moment more memorable to me than the first time she walked. As she did when she was a toddler, she reached out to me and held my hands, and took the three steps towards me. Then she lowered down to sit beside me. She was exhausted. It took all the energy she had to make those few small steps. She sat beside me and just leaned on me. She didn’t say a word. We didn’t look at each other. We just sat there for a moment in silence, blocking out the constant beeping of the machines. We got through the hard part, and she just needed to know that I would always be there for her to lean on. 

These two situations, one with a kid I barely knew and one with a kid I birthed, were so critical. Neither of these kids needed me to say anything. Neither of these kids needed me to do anything significant. I didn’t need to solve their problems or give them anything. They just needed me to be there in the space where they were. They just needed to know that, even for just a moment, they were not alone.  

When my dad died, people sent me flowers, cards, books about grief, messages, and shared stories of people they had lost. It was all well-intentioned and precisely what we all do when someone we know loses a loved one. It’s been almost ten years since I lost my dad, and of all those people, one sticks out the most in my memory. Despite not seeing each other for eight years, my friend took a train from New York to see me the night of the funeral. She didn’t come to the funeral or the burial. She didn’t come to the viewing or dinner after the funeral. She just invited me to meet her at her hotel after everything was over. After a day full of talking and crying and watching them lower my father’s body into the ground, I met her at the hotel. She didn’t give me anything. She didn’t say anything. She just sat with me in that space, so I knew I wasn’t alone. It was exactly what I needed, and I didn’t even know it. For the first time in a long time, I felt safe and loved, and I knew everything would be ok. 

Life is tough. Things are more challenging than usual for all of us right now, and we need each other more than ever. We often see people hurting so bad that we don’t know how to help them or what to say to them. The thing is that we are human and, unless we have a total lack of empathy, we feel compelled to help somehow. More often than not, we either say something, send something, or we don’t do anything at all because we don’t know what to do. We just look the other way because we are so scared of doing the wrong thing. I am guilty of this myself. As humans, we are meant to be connected. We are not designed to be alone. When one of us is hurting, we aren’t required to solve their problems. They don’t need our grand gestures or fancy words. They just need us to show up.

“We are all connected; To each other, biologically. To the earth, chemically. To the rest of the universe atomically.” ~Neil deGrasse Tyson

ready.

The following was something I wrote on October 5, 2015 when my daughter was only two years old. Today, while I was at close friend’s bridal shower, her mother took a piece of paper out of her pocket and read it to us. This piece is what she read. I wrote it six years ago and forgot about it, but I needed to hear it today, so I’m sharing it here. I don’t want to forget this again.

Bella loves the ocean. I mean she REALLY loves the ocean. She has a complete set of sea creatures that she plays with in the tub, she loves the sound of waves on her sound machine that she listens to at night, and she loves the sand so much that we carry all of her beach toys in the car just in case we see a big sandbox or a beach somewhere. Her sandbox in the backyard is full of sand and seashells from the beach where we go each year. It is her favorite place to play. When she was only two weeks old and we were both still supposed be at home healing, I took her to the beach for a week. The salt air and the sea ended up healing both of us. The ocean is in her blood and, like me; it’s what she needed. A year later, I took her back to the shores of Virginia where our family has gone for more than 20 years. Her love of the ocean had not changed, yet she was unwilling to go anywhere near the water. I kept trying to take her in, but she would cling to me and scream “no.” Though she had happily swum in pools several times, the sounds of the ocean and the waves crashing down was just too much for her in reality.

A couple months ago we went back to the beach and I tried to take Bella into the water. During the year, she had gone swimming several times, was very comfortable in the water, and still obsessed about the ocean. However, each time I took her down to the water and tried to get her to go in, or just put her feet in, she was unwilling and still terrified. We started this routine on Saturday and I tried each day, sometimes twice. Every time, she screamed and cried and did not want to go in. She was happy sitting back in the sand, chasing seagulls, and building castles. Thursday, we decided to go to the beach in the afternoon and evening since it had been an exceptionally hot day. About 30 minutes after we arrived at the beach Bella picked up her life vest, walked over to me and said, “Water, Mommy.”
I looked at her surprised. “You want to go in the water?”
“Yes! Water, Mommy.”
“Are you sure?”
“Yes” she said fervently.
So, I put her life vest on, walked her to the edge of the water, and continued walking right into the ocean. Suddenly, she had no fear. The time had come. She was no longer afraid of the roaring sound of the waves. She was not afraid of the vastness of the ocean. She was no longer afraid of the unknown. I have tried so many times to get her to walk into the ocean and she refused. She just wasn’t ready. When it was time however, she knew she was ready. The experience came easy to her and to me. She smiled and splashed and loved every minute of it. The next day, she returned to the water as if it was something she did every day. She returned with confidence.

At church today we talked about times in our lives when something had to change. We talked about how people in our lives often tell us when that has to happen or how it has to happen even when we’re not ready. When we are going through something, anything, the people around us give us suggestions of how they got through something similar and hope that we can learn something from their experience. The thing is, until we are really ready, we can’t change. Each of us has to play in the sand for a little while and get used to the sound of the roaring waves. We must get comfortable with the vastness of the ocean. The courage within us must bubble up to the surface so that we can run with wild abandon towards the surf. It is only then that we can enjoy the freedom that comes with letting ourselves be vulnerable.

In the last few years, I lost my uncle and my dad, ended a relationship that I thought was forever, and embarked on parenting a child alone. With each major change, my friends and family told me stories of their own experiences. They told me how long the hardships would last, how long the pain would last, and how to deal with situations like these. At times I struggled and thought that maybe I was doing everything wrong. I found solace in the wrong places and with the wrong people. I searched for a way to make everything right. I longed for peace. I turned to yoga, therapy, travel, running, writing, drinking, misguided love, and food, but none of this was going to get me where I needed to be. I just wasn’t ready.

It wasn’t until my brave little daughter looked at me and told me she wanted to go into the ocean that I realized that no real change could ever happen until I was ready. Every one of us will have a pivotal moment in our lives where we either have to change something or suffer the consequences of stubbornness, fear, and not letting go. It may be a death, the end of a relationship, an addiction, job loss, abuse, fear, parenthood, or a tragedy. Whatever it is, it changes our perspective and expectation of how life is “supposed” to happen. The thing is that each one of us is unique. Not one of us will have the same experience or series of experiences. Some will come out of the womb craving the ocean and run to it. Others may take weeks or years to feel each grain of sand and turn over every shell before the time has come to go deeper. So think of others’ advice as rays of sunlight. Soak up each one with gratitude and feel their warmth. Just don’t force yourself into the surf until you are absolutely ready. It is only then that you will be able to feel each salty splash and allow yourself to be caught up in the new rhythm of your life guided by the tide.

Kintsugi

Kintsugi is the Japanese art of repairing broken pottery and filling the cracks with gold, silver, or platinum. This repair shows that the brokenness is part of the history of the piece instead of some reason to throw it away or hide it. It celebrates each crack by filling it with precious metal. The piece often looks more beautiful as a result of this process.

Shortly after her seventh birthday, we found out that a part of my daughter, her most precious part, was broken. To repair it, the surgeons would have to further damage her tiny body by breaking through her sternum and stopping her heart, cutting out a part of her pericardium, and using it to repair a large hole. Much like a broken piece of pottery, she would forever have a crack down the center of her chest.

Shortly after her diagnosis, a friend sent us a Kintsugi kit. We opened it and looked at it, but my daughter wasn’t ready to do anything with it. Today, as part of our homeschooling, we watched a video about the art of Kintsugi and talked about how we are like that broken pottery. We opened the kit and pulled out the two beautiful whole bowls. Using a piece of cloth, we smashed the pottery with a hammer. We took time to look at each piece and see how each one fit into the other to create a new bowl. We glued the bowls back together and sealed them with gold.

Through this process, we talked about times when we felt broken. We talked about how sometimes we feel like all those broken pieces just lying there on a cloth. We talked about things in our life that make us feel new or better. We talked about how music, art, family, our dog, cuddling, and our hammock are our gold paint.  These things help us feel whole again. I told my daughter that we could look at these broken times as part of our history and recognize that they are not weaknesses, but the things that make us stronger. She said her surgeon made her stronger with stitches. She said she’s lucky because she only has one crack and the bowls have cracks all over.

This discussion led to us eventually painting her scar gold like the cracks in the pottery. She looked at it and smiled. She loves her scar. She asked if it could always be gold and I replied, “It is even if you don’t see it.”

My daughter is seven. Deep discussions don’t happen much. Even today, we only touched on the significance of the art we did. My wish for her is to remember it. I want her to see gold beaming through her skin like sun rays bursting out of her chest every time she looks down at her scar.  When she gets hurt or fails or life just knocks her down, I hope she finds her gold paint, puts herself back together with it, and realizes she is stronger and more brilliant every time. I hope she never feels shame when things go wrong, but instead sees the lesson that comes from breaking.

“The wound is the place where the light enters you.” 
~ Rumi

the surgery.

“I wish God would let me be born again so I could be born with a whole heart and be a normal kid. I wouldn’t have to get this surgery and I could just play tomorrow.”

 

This is what my 7-year old daughter said to me the night before her open-heart surgery. It was, as my dad would’ve put it, a preachable moment. As instructed, we had just washed all of my bedding in hot water and dried it extra long to remove any germs so she could sleep in my bed that night. We then scrubbed her down with prescription pink foam soap, cleaned her nose out with a prescription gel, and swished a strong yucky mouthwash in her mouth. It felt like I was preparing her for the slaughter. 

Isabella asked me if she could sleep in my bed that night. I usually encourage her to sleep in her bed, but all I could think that night was whether it would be the last night I would have with her or not. The “what ifs” were screaming in my brain and the complications and survival rates the doctor had discussed with us were on a continuous loop. You hear about people having successful open-heart surgery all the time. When it is your seven-year-old child, however, it is hard to remain optimistic. 

That night we both laid in my bed looking at the moonlight coming in our window. Neither one of us got much sleep. The 5 am alarm came fast. We packed our car and drove to the hospital. Bella was silent on the drive in except to say how beautiful the city looked during the sunrise. When we arrived in the parking garage of the hospital, Bella asked if we could just sit in the car for a little longer. She told me that she was scared she might wake up during the surgery. She was scared that it would hurt. I held her tight knowing I may not be able to do that for a while. 

We went up to the cardiology floor of CHOP and went into the reception area. There was a huge fish tank there and Bella went running over to it. She laughed at the fish and described each one to me. After I registered and told her it was time to go in, Bella said, “I just want a little more time looking at the fish. I’m not ready.” The nurse told her it was time and she cried, “I’m not ready. I need more time.” I assured her that we would still have time before the surgery and convinced her to go back with us to the pre-op room. I wasn’t ready either. 

In the pre-op area, I was instructed to cover Bella once again in pink foam, wipe her down, and dress her in a hospital gown. My hands shook as I coated her body with the stuff and I worked hard to hold back tears. We found a movie for Bella to watch as we waited. My mom joined us here and arrived before the surgeon came in to speak to us. 45 minutes before the surgery, they gave Bella a medicine to calm her down. It quickly took effect and she began laughing and yelled out, “I think I can do this! I’ll be asleep the whole time. Hahaha!” She then quickly fell fast asleep. This was before anesthesia was ever administered. 

Isabella’s surgeon came in and introduced herself. She was kind and gentle. She talked about loving animals and hearing that Bella loved animals too. She described what she would be doing and about how long everything would take. She assured us that a nurse would check in with us every hour to give us updates. Meeting her put me at ease. She was the right one to do this. I sent up a little “thank you.” 

When it was time, the anesthesiologist came to introduce herself(another woman, hoorah!) and let us go with her as she wheeled Bella to the OR. Though Bella was already asleep, my mom and I gave her kisses through our masks and watched as they wheeled her off. My heart pounded and my chest hurt as I watched her go. 

Due to COVID, the regular surgical waiting rooms were closed. My mom and I sat on a bridge that connected two parts of the hospital and looked out on the street from the sixth floor. It connected the CICU where Bella would be after her surgery and the CCU where she would be after her time in the ICU. As promised, the nurse called every hour with updates. The first call came to tell us that the surgery had begun. The second call was the hardest. They stopped her heart and put her on the bypass machine. While I appreciate and marvel at modern medicine, nothing is reassuring about the fact that the heartbeat you’ve heard since it was in the womb, that heartbeat that sounded like a symphony, was stopped. 

I thought about that first time when I was only a couple months pregnant and my OBGYN turned the monitor on my belly; that moment I heard Isabella’s heartbeat and realized my new purpose in life was to protect it against all odds. The cardiologist told me that this defect happens in the 4th or 5th week of pregnancy. As the surgeon was repairing the defect, I tried to remember what I was doing during those early weeks of my pregnancy. Did I even know I was pregnant yet? Did I do something that caused this? My entire pregnancy and for the last 7 years of Bella’s life, they’ve told me her heart was good. How did everyone miss this? It just didn’t make sense to me. And when you’re child’s heart is stopped, these are the thoughts going through your head. There is a desperate plea for answers. 

Isabella’s heart was stopped for just over an hour. It seemed like forever. I eventually turned my headphones on and began listening to Kirk Franklin’s “My Life is in His Hands.” The lyrics start, “You don’t have to worry, and don’t you be afraid. Joy comes in the morning, troubles they don’t last always.” Admittedly, my faith has taken a beating since my dad died. It is nearly numb and nonexistent if I am being completely honest. However, when your child is having open heart surgery, that faith returns fast. It is quite possibly the only thing that held me together that afternoon. And for some reason on this day, it was old Kirk Franklin and Fred Hammond albums that got me through. 

The next call I got was to tell me she was off bypass and they were finishing up. Her heart was beating again. She was breathing on her own. I took a huge breath. It felt like the first breath I took in days. After another two hours and two phone calls from the nurse, we got a call saying Bella was in her room and asking for me. I took another huge breath. She was done. I looked at my mom who broke into tears of relief. 

As we entered Bella’s ICU room, I saw her tiny 42-pound body in the huge bed with what looked like dozens of tubes and wires coming out of her. It was like I was seeing my baby for the first time. She looked so helpless and frail. She kept trying to open her eyes but she couldn’t open them. She let out little moans and asked for me. I took her hand, crouched beside her bed, and, through tears, sang her favorite, “His Eye Is on the Sparrow.” We had a long way to go, but she was still with us and she was more beautiful than I ever remembered. It was at that moment that she became my hero and a true heart warrior.

Stay tuned for her recovery story……

A decade.

Last night I scrolled through my Instagram feed reading so many stories of the great decade people had for their 2010’s. I loved looking at the pictures of great successes, life milestones, vacations, etc. I tried to think of what I would reflect on and all I could think about as a theme for the last ten years of my life was loss. Since 2009, I lost my dad, my uncle, both of my grandmothers, five close friends, my dog, and three relationships that really meant something to me with men who I cared for truly and deeply. I struggled with medical issues that required specialists, tests, scans, medications, physical therapy, more tests, surgery, and finally a diagnosis of an incurable chronic disease. I battled depression, isolation, profound loneliness, and addiction. All of this in just 10 years of my life. How could I create a happy post from that? 

Then, today I spent a few hours with Bella helping her make the slime from a slime kit she got for Christmas. I felt the gooey slime in my fingers and started playing with it. Bella looked at me and said, “This slime is changing you.” I smirked and said, “Oh really? How is it changing me?” And her whole face smiled as she said, “It’s making you giggle and smile.” Surprised I responded, “What do you mean? I laugh and smile.” “No you don’t, mommy. You really don’t ever laugh or smile.” Now I was fighting back tears. This is how my 6 year old sees me? I thought about it and said, “I used to laugh and smile all the time. I guess I’ll have to work on that.” 

I tried to think about what happened to that giggly smiling girl I used to be. I’ve let my grief take over so much that my own child, the only person who lives with me and sees me everyday, doesn’t think of me as someone who giggles or smiles. I’ve been so focused on all the bad things that have happened that I forgot to really appreciate the good. That includes the good of the last 10 years. 

Between 2009 and 2019, I ran 2 full marathons, 2 Broad Street Runs, 5 half marathons, and dozens of shorter races. Sometimes I cried or walked to get there, but I still crossed. Every. Finishline. I got my Master’s Degree and a job in the field I always dreamed of working in. I bought a house. I bought my first car without a cosigner.  I travelled to Alaska four times, Montana twice, New Orleans, Nashville, Little Rock, Asheville, Memphis, Chicago, Atlanta, Mississippi, Florida, Nicaragua, Guatemala, and Kenya. I saw the Lion King, Wicked, and Hamilton on Broadway. I saw John Butler Trio twice, once up close and personal in the VIP section. I saw the Lumineers twice, Dave Matthews twice, Billy Joel and Ed Sheeran. I saw The Philadelphia Symphony, dozens of Shakespeare plays, went to my first Opera and my first Eagles game. I saw the Phillies win and lose several times over while I drank cold beer and baked in the sun at The Bank. I reconnected with old friends. I met new friends who became family. I adopted a new puppy. I gardened. I cooked. I wrote. I practiced yoga. I painted. I sang. I performed publicly. I successfully put IKEA furniture together by myself. 

And last, but most important, I created, carried, and gave birth to my first and only child. She came into the darkness of my life like a ray of sunshine covered in glitter. I sang her to sleep every night. I went treasure hunting on the beach with her. I danced in the living room with her. I celebrated her every accomplishment. I saw her first steps, heard her

first words, and fed her her first food. I walked her to school each day and blew a kiss to her before watching her go off on her own. I listened to her say, “I love you” everyday.  She taught me how to be a solo parent. For the last seven years of this decade, she has been my first thought every morning and my last thought every night. 

I’ve had my head so far up my grief’s butt that I haven’t fully allowed myself to enjoy all of the life-giving moments in the last decade. I’m so stressed about all the little unimportant things that I haven’t relaxed and let my daughter see me truly giggle and smile. When I really think about it, even those losses all taught me something. I carry pieces of those loved ones with me everyday. They became part of who I am. Even the broken relationships taught me so many new and wonderful things and helped me see myself more clearly. I have wonderful memories of each of those men and have learned to forgive and wish each of them happiness and success in life. They each added goodness to my life. I harbor no ill will or grudges against them and that is a lightness I never understood or felt before this decade. 

My medical problems have taught me to be empathetic towards people with chronic pain and illness. They have taught me that it’s ok to ask for help. They’ve taught me to speak up when something doesn’t feel right.  They’ve taught me to be gentle with myself and to rest. And, though my diagnosis was not what I was hoping for, it was finally an answer for years of questions and doctors literally shrugging their shoulders. It brought me new hope and a clear path for moving forward. 

So, as I sit here on the first day of the new decade, my plan is clear. I will spend it laughing with my daughter. I will smile and soak in all the goodness around me and celebrate my successes and my travels and my experiences. I will smile even if my bank account is empty or I have a bad day because there is life in everything and every day we can find joy in something. When I think of my dad, I picture him smiling. Always smiling. Even when he was battling an incurable cancer, the picture I took of him in the hospital shows him smiling ear to ear while being pumped full of chemo. He found joy in everyday. He found a reason to be thankful in everything. It is a challenge for me to do this. When I am gone and my daughter only sees me in her mind, I don’t want her memory of me to be the me with the cloud over my head all the time. I want her to see the me who is laughing and smiling without the use of a slime kit.

dear dad.

I wrote this letter today, on the eve of the 7th anniversary of my dad’s death. I’m sharing it because it made me feel better and maybe it will help other people who have lost someone close.

Dear Dad,

It’s been seven years since we said goodbye to you. Seven years since we sat around your bed and told you it was ok to go and that we would be ok. I remember that day in the car after your doctor’s appointment a couple months before you passed  when you told me you were ready to go, but you were worried that we weren’t ready. You were probably right. I can only speak for myself, but I think we have all been managing as best we can, just with an ache in our chest that won’t seem to go away. I’d give absolutely anything to get you back or to just chat for a few hours. Even though we knew you were leaving us, there were so many things I forgot to say. There were so many questions I forgot to ask.

I’ve struggled with that question of why good people like you have to die so early when some really crappy people get to live so long. It’s a hard question and it’s left me with a pretty cynical and unfair perspective of the world. It’s left me with a lot of anger towards God. Maybe those people are still around because they need more time to figure out how to get things right. Who knows? You told me once that God is ok with us being mad at him because it means we are still engaged with him in some way(that probably isn’t verbatim, but that’s how I understood what you said). God and I haven’t been right since you left, but I’m still trying.

I heard Anne Lamott speak a couple years ago and she said when cancer takes someone from you, it’s like an atomic bomb goes off in your life. She couldn’t be more right. For me, it meant running a lot, then hours of yoga, then so much alcohol that I started to think it was ok to put vodka in my coffee in the morning. I would say I should have stuck to the running and yoga, but the drinking led me to get pregnant unexpectedly and though that was pretty scary at first, becoming a mother has forced me to grow in ways I never thought possible. I became a mother at 35. Talk about an atomic bomb! The nurses actually said I was of “advanced maternal age” and whispered it every time they said it like I had leprosy or something.

I named my daughter, your granddaughter, Isabella Grace. I read that the Hebrew meaning of the name is “God is perfection.” It’s such a perfect name for her. I chose her middle name because as she was growing inside me, I felt like she was God’s grace for everything I had ever done wrong in my life. We have frustrating moments from time to time, but no matter what, we tell each other “I love you” at least a dozen times a day. She tells me I am beautiful every morning and I think I’ve actually become more beautiful inside and out because of her. She brings out the very best of me.

We moved to Philadelphia and are living in the city now. She does really well with city living, but she loves the country and our visits to Central PA. You can tell it’s in her blood. She loves horses and animals in general. She especially likes to pretend she is one. This makes her come across as a little weird sometimes, but I absolutely love that about her. She doesn’t have a father in her life which is hard for me sometimes since I had such a good one, but she is surrounded by so many people who love her that she doesn’t seem to mind. She is an incredible artist and likes puns, so I know you would really like spending time with her. Sometimes she smiles or laughs and I feel like I’m looking right at you. Today was an emotionally rough day for me and I went to pick her up from her art school. I walked into the room and she was laughing and dancing to music and just fully enjoying every ounce of life without a care. Then, she saw me and ran across the room and gave me a huge hug. That made me think of you too. I wish you could meet her. I think you two would really like each other. I tell her stories about you all the time.

Aside from Isabella, my other big news is that I am finally working full time at a theatre. I’ve been there just over four years. It’s not always easy and the pay isn’t impressive, but I love the work. I think you might be able to relate. 🙂

The trees are changing here and it’s so beautiful. I remember that day just before you left when we drove through Cumberland County to see all the beautiful colors on the trees. I remember the brisk fall air and the feeling like life would go on and things would be ok. I hope the trees change where you are and that you are able to hike and fish and read all day. We sure do miss you here.

Love,

Rebekah

Mangia.

Tonight I was struggling. So much is going on in my life so fast and I was trying to process everything in a somewhat coherent way. I scrolled through my phone and called a few people, but I only got voicemails. We moved to this city four years ago and have built up an incredible village of people who support us through good and bad, but tonight I needed someone different. The stuff I am dealing with is deeper. I’m aching at my core and for the life of me, I couldn’t figure out why I am so lost about who to call and talk to about this. Then I remembered a time before when my panic attacks led to blackouts and life seemed like more than I could handle. I remembered who got me through heart monitors and death, unplanned pregnancy and big break-ups. It was that family I had created once, the family who called me Wilky.

At one point in my life, I started each evening walking into a dark and empty restaurant. The only sounds I heard were coming from the kitchen where fresh herbs and vegetables were being prepared with extra precision and care and fresh burrata and mozzarella were carefully crafted while spanish music played in the background. It was food preparation that took hours and was truly an art form. Each bite of food in this restaurant created a memory. It was to be savoured and enjoyed like an Italian Opera. It was not mass produced or created elsewhere. No. This food, these masterpieces, can only be found in a still small dining room in the heart of Pennsylvania.

That time of setting up before guests arrive was my sanctuary. My coworkers and I would prepare fresh whipped cream, dressings from scratch, and a fresh batch of sangria filled with crisp apples and juicy oranges. Silverware would be checked and double checked to be sure it was perfectly placed on the crisp white table cloths. Marinated olives would be stirred and hot Focaccia would be pulled from the ovens and placed on the cooling racks, filling the room with the smell of sea salt and rosemary. Candles were lit and small jars would be filled with dark green Italian olive oil. Every night brought new and exciting guests and experiences, but the set up was always the same. Like the routine of a liturgical church service, it was a holy process for me.

A shift in this restaurant often meant constant moving on my feet for 7 or 10 hours, but I never noticed, even when I was nearly 8 months pregnant. Our job there was to create an atmosphere where guests could come and forget everything else in their life. Or perhaps it was to celebrate the good in their life or share the sorrow. It was not a place to get a quick bite. It was a place to come and stay awhile and drink good wine, specially crafted cocktails, and the most incredibly prepared seafood, game, and exotic vegetables. It was a place where we took the time to learn about our guests’ lives enough to become the guests at their weddings and parties. It was a place where the desserts were so delectable, guests were talking about them for days and asking us to make them again. It was a place where professional upscale guests would be caught licking the bowls of their nero pasta because dammit, it is just that good! Guests left feeling like they had just visited family in another land.

I flourished in this environment. There is joy that comes in serving others and guiding them through an experience like nothing they have had before. There is joy that comes in creating a cocktail that perfectly fits their description and helps them forget any troubles they had in just one sip. There is joy that comes in working as a team to bring this experience to several hundred people on the busiest nights of the year, sometimes in masks and costumes. There is joy that comes in memorizing a menu in Italian or Spanish or knowing how to describe the difference between 20 different dry red Italian wines. There is joy that comes from serving the food of the most talented and creative chef many of us will ever experience in our lifetime.

The real joy, however, came at the end of our shift. Most nights, we would say goodnight to the last guest, clean the dining room, and then sit at the bar and have our own glass of wine. We shared stories of the night and stories of our lives. No topic was off the table and advice was always given with love and understanding. This was the life giving part of our day. This was our confession booth, therapy couch, and late night phone call to a friend all wrapped into one. These people, this family of mine, got me. I belonged there. Perhaps for the first time in my life, I felt like I truly and completely belonged with them. We fought sometimes. We judged each other sometimes. We disagreed often. In the end though, we pumped up the music, moved the tables out of the way, and danced it out. No matter what happened between us, we were always able to end an evening with dancing and laughter: pure joy. There was nothing a little Aretha Franklin couldn’t fix.

We recently lost a family member and his name went by as I scrolled through my phone. That tightness in my chest made me long to hear his voice and talk to him about what I am going through right now. He would know exactly what to say. He always did. I can’t talk to him. I can’t sit at that bar with those people and talk to them tonight or dance out the pain that life brings, so instead I decided to listen to Nina Simone while I drank too much wine and reminisced about a group of people who I love and miss dearly.  

snow day.

My morning began with my daughter dancing on top of me at 7am to Jazmine Sullivan while wearing a princess dress. I looked out the window and honestly couldn’t understand why the school district decided to cancel today. There were some flurries, but the roads were just wet. One of the downsides to working from home is that a “snow day” just means you have to spend the day trying to get your work done while your 4-year old runs around the house like a crazy person and uses you as her personal jungle gym. Every time this happens, I end up getting irritated with my daughter and the two of us end up in a screaming battle.

From about 8-11, I tried my hardest to get as much work done as possible while the television entertained my daughter. I had her help me assemble gift bags for teachers to occupy her, but by lunch time, she was getting pretty restless. We ate lunch and I continued to try to get work done. She was literally climbing the walls by 2pm and I was wondering if day drinking was kosher in this situation. By this time, the storm was dumping snow on us at a rapid rate and it was clear that this was a justified snow day and I would have to shovel at some point. I closed my laptop, dressed us both in multiple layers, and said, “let’s go play in the snow!” Bella’s eyes glowed with excitement and we headed outside with toys, salt, and a shovel.

She  immediately started running up and down the sidewalk in the snow, eating snow off our neighbor’s motorcycle, and catching snow on her tongue. I began shoveling the heavy wet snow and commiserating with my neighbor. She looked over at Bella who was laughing and chasing snowflakes with her mouth. She looked at me and said, “You know, I can’t remember the last time I caught a snowflake on my tongue.” She put down her shovel, looked up at the sky, and opened her mouth. A snowflake landed on her tongue and she closed her eyes, smiled, and savored it like it was the most delicious thing she had ever tasted. I stopped shoveling. I looked at my beautiful daughter running down our beautiful snow covered street. All I could hear was her laughter. I looked up to the sky and opened my mouth to catch a snowflake. A big fat wet snowflake hit my tongue and another went right in my eye, temporarily blinding me. I let out a teenage giggle and stood there, in the moment, and took in the taste, sound, and chilly air.

While my mind told me to go back inside and do more work, my heart decided that there was more fun to be had in the backyard. Bella and I finished up the shoveling, salted the sidewalk, and ran through the house to our little backyard oasis. We ate more snowflakes, built a very sad looking snowman, and laughed about the possibility that there might be yellow snow on our new snow friend’s back. Our dog barked in agreement(guilty little canine). Once the snow got so heavy that we could barely see each other, we decided to go back inside.

Inside, we assembled four puzzles, danced around the living room, played with our cat, and ate pizza and oranges. At dinner, Bella looked up at me and said, “I just love you so much.” And that was it. That is when I knew for sure that I made the right decisions today. Snow days have almost always been stressful. I always choose work over Bella and end up only getting annoyed with her. Today a switch went off in me that changed that. I put us first. I decided to live in the moment and to take in the blessing that a day together can be.

At bedtime I read her a couple books and sang the three songs we sing every night. She sat up and said, “Mommy, you left your phone downstairs!” I smiled and replied, “You know what? I don’t even care.”

Happy Snow Day! May we all have many more days like this to come.

Slaughter Beach

This morning was a normal lazy Sunday. My daughter and I woke up, went downstairs, and made breakfast. As we ate it, we stared at the disaster that is our house. Toys on every square foot of the floor, a pile of dirty clothes and about four piles of clean ones that were folded but not put away. The dust in the house spread across the light coming in the window and my daughter pointed at it and said, “Look, Mommy! Those sparkles are dancing around in the sun rays.”

A responsible mom would have taken one look at all of this and dedicated the rest of the day to fixing it. Instead, I looked at my daughter and said, “What do you want to do today?” Her eyes grew wide and she looked up at me as if she had been waiting months for me to ask that. “I want to go play at the beach with all the pretty stones and I want to take Dane with us. He needs to go to the beach.” I looked at our poor old dog whose ears had perked up at the mention of his name. He is nearing 12, has terrible arthritis that has destroyed his hips, he is recovering from lyme disease, and he is blind. She’s right. He does need to go to the beach. Despite the fact that it is early November, it was actually a pretty warm day and kind of perfect for the beach. So, we packed up a lunch, a bucket, a towel, and puppy supplies and headed out on the road.

When we got to the beach, we walked pretty far from our car and set up a little private space on the sand. After laying everything out and getting comfy, my daughter told me that she urgently needed to pee. So, we packed everything back up, hiked back to the car by the bathhouse and regrouped. 30 minutes later, we headed back to our space and set everything up again. Bella started to play with her horses making them castles and corrals out of sand and I went right for my phone. After about 5 minutes on my phone, I put it down and looked out at my old dog and tiny daughter playing at the edge of the water. He was barking at the waves and she was laughing at him and telling him what the ocean was. The sun peaked out from the clouds and the only other sound we could hear was the lapping of the waves on the sand. The closest person to us was so far away they were only a speck and the only boats were all the way out on the horizon. I took a deep breath and just took it all in. I decided to be present for a moment and it took effort for me to do it.

I looked at my old dog and remembered the day I brought him home as a puppy and about all of the different houses and people we have lived in and with together. I remembered him putting his head on my belly as I had my first contractions. I felt that feeling of safety he gives me. He has protected me for almost 12 years and I will lose him soon. He barely gets out of the house or plays anymore, but today, he was like a pup again. He played with Bella and slept on the beach.

I looked at Bella and smiled as I thought about the fact that this amazing little person came from inside me. It’s so crazy!! I still don’t totally understand it. This little funny stubborn girl who thinks she is a horse, talks about horses, plays with horses, and wants to read horse books, started as a tiny little bean inside me. That smile that lights up a whole room is part of me. And that feeling I get when I get her something she wants, like a day at the beach, is like nothing I have ever felt before.

I looked at Slaughter Beach. This hidden place we found one day by chance. It is covered in multicolored rocks in every size that have been smoothed out by the ocean. Pieces of sea glass hide in the sand acting as great treasures to be found by little hands. Coral juts above the surface of the water collecting tiny creatures that are eaten up by the bouncing sandpipers in search for a snack. The beach is far enough in the bay that the waves are small and friendly to children and old dogs. The people are few and far between. Most are scavenging the beach for sea glass and stones or simply looking for a quiet place to relax. Everyone takes the time to stop and talk to each other as they pass. It’s as if we all share a secret because we know about this beach, so we are already old friends.  Dogs are welcome and often seen. What an incredible place. 

 

Once I forced myself to take this moment and focus on the present, I realized just how lucky I am and I was filled with gratefulness. It was a connection to the universe, a grounding, a sense of worth. I decided that except for taking photos, my phone would stay in my pocket. I chased and was chased by Bella down the beach, I went on a treasure hunt with her and helped her fill our bucket with sea glass, shells, crab parts, and various colored rocks. I splashed in the waves with her, shared a picnic lunch, and soaked up what may be the last warm sunny day of the season.

Like any day, we had our troubles throughout the day, but it was otherwise a perfect day

together. We came home to our filthy house and I realized that a responsible mom might clean the house on a day like today, but going to the beach, letting go a little, and just appreciating time with my daughter is just as responsible. My guess is that my daughter will remember our days at Slaughter Beach, but our messy, dirty house will probably soon be forgotten.