HEARTS FOR EZRA AUCTION!!!

Ethan and I are incredibly lucky to have a dedicated, hard working team of volunteers that help us with coordinating Hearts For Ezra events and fundraisers. Our team was in full planning mode this winter for our big March fundraiser when we lost Leo (https://ezradavid.wordpress.com/2015/01/29/my-secret-pregnancy/) and then when a week later I suffered some serious health complications, we knew we needed to cancel the event.

Well, now, six months later, we have regrouped and tomorrow is our summer awareness event- Super Fun In Motion as part of Old Hallowell Day (http://www.heartsforezra.org/#!events/c1k8w). We are also excited to share that we have launched an online auction! We are so grateful to all the individuals and businesses that have donated and helped to make the auction a success. This will be our big fundraiser for the year, so please check it out!! Some items are local, but many items can be shipped anywhere in the world. Thank you for your support!

https://www.winningcause.org/heartsforezra

If no items peak your interest, and you’d still like to support Hearts For Ezra, DONATE HERE!

Thank you!

xo

I’m two months post-op. Just 9 weeks ago, I found myself lying on the bathroom floor thinking I was going to die of a heart attack and it seems hard to believe that two months have already gone by. I don’t think I’ve ever had two months of my life where I have done so little- just simply resting, sleeping and trying to piece together all that has happened since January.  My strength is growing, confidence in my heart is slowly getting better- overall, my body is healing. It is truly amazing how resilient our bodies can be. But how about our emotional well being? Is that as quick to heal?

There are times when my arms physically ache to carry our baby. I must admit, what touches my heart more than seeing infants or pregnant bellies, is when I see siblings interacting. I just want that so badly- especially for Daisy. She craves a sibling with every inch of her body. And so Ethan and I are once again considering other ways to grow our family. We know that we can not have a biological child- it could be very dangerous for me to get pregnant again. So our thoughts turn to other ways of adding a child to our home- adoption and surrogacy. There are so many children in the world in need of love and protection. We know we can provide that. We’ve been doing research on domestic and international adoption and on surrogacy and embryo donation. We are trying to decide if we have it in us to start this process. I feel very protective of Daisy and want to be sure we are intentional about any child we bring into our family.

The whole reason I started this blog 2.5 years ago was to see if there was anyone, anywhere who could help us with Ezra’s diagnosis. Over the years, it has turned into a cathartic way for me to both document our experience and keep our community updated on how things are going.  And now after our most recent losses, I am thankful for the opportunity to once again reach out and see if there is anyone out there who can help us. I have heard about serendipitous scenarios where a woman is seeking an adoptive family for her baby and is connected with a couple looking to adopt. Or where a woman is interested in being a surrogate and is looking for a family who cannot get pregnant on their own to work with. I would like to think that by putting it out into the universe that we would love to add to our family, somehow a connection can be made.

It is important to me to express how incredibly grateful we are for our Daisy. I recognize that there are many, many couples who struggle with having even one child.  Some may think, “these people should just be happy with the child they have”. And we are. Every. Single. Day. Ethan and I constantly say to each other how very lucky we are to have Daisy in our lives. She is our miracle child. And if adoption and surrogacy do not work out, our family of 3 will continue to hold each other close and be thankful for each day we have together.

xo

In my last blog post, I asked the question, How much loss can our spirits take? As it turns out, last week I guess my spirit had reached it’s limit.

Friday, January 30th. Ethan, Daisy and I were piled in our bed daydreaming of warm, beautiful places we could go visit over winter break. We needed to get away. To feel the sun. To be together as a family and find our smiles.

It was just before dinnertime and I began to feel awful. Ethan opened a window for me to cool my suddenly burning body. I asked Daisy to go play in her room. I made my way to the bathroom, unsure if I was going to be sick. I then felt a crushing sensation in my chest and my arm went numb. I told Ethan to call 9-1-1.

Our next call was to one of our very amazing friends who swept in and picked up Daisy so she wouldn’t be there when the ambulance arrived. It took the ambulance 20 minutes to arrive at our home and when the EMTs came upstairs, I remember begging them to help me. That nothing could happen to me. One of the men curtly told me to “calm down, Ma’am… just take a deep breath, Ma’am… I can almost promise you, you aren’t having a heart attack, Ma’am”.

Because of the snow, they couldn’t get the ambulance up our driveway and I had to walk down to the truck. I finally laid down on the stretcher, they hooked me up to a machine and the EMT promptly apologized. “Remember how I said you weren’t having a heart attack? I was wrong.”

A HEART ATTACK? I am 39 years old. I eat a very healthy diet. I used to teach yoga. I have never smoked a cigarette in my life.

They brought me to the closest hospital and a team of doctors were waiting. More machines were attached to my chest, more medicine was administered to stabilize me. I told everyone within ear shot that I had a 5 year old daughter who had been through enough loss and needs her mom. The cardiologist came up to me with a grandfatherly, loving smile, looked right into my eyes and said “you will be fine. I know I will see you again.”

I was then quickly transferred back to the ambulance for a very snowy drive down to Maine Medical Center in Portland. The plan was to go right into their Catheterization Lab so the cardiologist there could take a look at my heart and see what was going on. Because I had responded so well to the meds, they decided to hold off on the Cath Lab until the next day, so my heart would have a chance to rest.

On Saturday morning, the visit to the Cath lab provided a lot of information. Ethan did a good job of keeping our friends and family informed by sending out informational emails…

From Ethan:

This morning Emily was taken into the Catheterization lab and the procedure was done in about 30 minutes.  She has what they are calling a Coronary Artery Dissection AND a Stress Cardio Myopathy. The good news is that they didn’t have to put in a stent or a balloon and she didn’t need a bypass.  They found the area in the artery where the dissection was and it appeared that it had healed itself.  They did see that the artery was constricted and she was put on Heparin (a blood thinner). It’s unclear exactly what caused the dissection, but we are told pregnancy and birth can sometimes cause it with the introduction of hormones that can affect the walls of the arteries.  In any event, the dissection was causing a constriction and the catheterization showed that it had healed itself and would improve. The more tricky news is that in addition to the dissection they found that her heart was not performing at full strength.  Where a normal heart might operate at 60% efficiency, hers was operating at 30%.  So, they went in to deal with the arteries and potential blockages, and found her heart not doing well. The ECG shows what looks to be a Stress Cardio Myopathy, also called Takotsubo, also known as Broken Heart Syndrome: http://www.health.harvard.edu/heart-health/takotsubo-cardiomyopathy-broken-heart-syndrome . As the name implies, when someone (almost always a woman) experiences tremendous stress or trauma, the heart might not be able to take it.  It could be a sudden death in the family or traumatic news… given recent events and what Emily has been through over the past few years it seems to be a fitting description.

So, it appeared I had 2 conditions affecting my heart- an artery dissection and also something called Broken Heart Syndrome. Seriously. I cannot make this stuff up. The doctors called me “a mystery” and an “enigma”. They said they have only seen a few cases like this- especially in such a young person. The good news was that it seemed my body was healing itself. I felt comforted to be under such wonderful care and hoped to be heading home soon.

On Sunday, a good friend came to see me, and a few minutes into our visit I started feeling pressure in my chest. I called a nurse over and they wanted to immediately move me back down to the Cath Lab.

Another update from Ethan:

This afternoon, Emily was moved back to the catheterization lab after having some symptoms in her chest and they found the artery was 90% constricted. The head of the Cath lab called in a heart surgeon, and the decision was made that Emily needed bypass surgery. She was taken in yesterday around 3PM and at 7PM the surgeon reported that everything had gone well and they had in fact done 2 bypasses.  By 8PM I could go see her and by 9PM they were able to extubate her (take the breathing tube out).  When I left last night, she was able to communicate a little bit and was in a great deal of pain.  Last night was very hard for her and I’m sure very uncomfortable. For those of you familiar with the procedure, either from a medical standpoint or from personal experience, it’s a fairly standard operation and one that people much, much older and sicker than Emily recover from fully.  For the rest of us, the thought of stopping the heart and going in through the chest to do what they need to do is terrifying.  Emily is receiving excellent care and all of my questions are being answered as best they can.

Double bypass, open heart surgery. Holy Crap. The week in ICU passed in a blur of blood draws, beeping machines, kind and loving nurses, compassionate doctors, pain, tears, gratefulness and fear.

At the end of this, I am left with a few different things. The least of my worries is my new, crazy big scar running down the center of my chest. Much more importantly, I now have a great deal of fear that my heart is just going to stop someday. That I won’t get to see Daisy grow up. That our family will face more loss. But, most importantly, I am left with an immense amount of gratitude. I am grateful we did not hesitate to call 9-1-1. I am grateful the doctors at our local hospital knew to transfer us to Portland. I am thankful the head of the Cath Lab was on call all weekend and we had the best of the best care. I am beyond grateful for Ethan’s love and his positivity, his questions and his advocacy. I am thankful for Ethan’s parents’ unconditional caring for Daisy, and for my siblings flying in to share their love and support. Every message, email, phone call… At the risk of sounding dramatic, I am just so very thankful to be here to witness it all.

The end of the week, which came just one week after facing the unfathomable loss of our full term baby son (https://ezradavid.wordpress.com/2015/01/29/my-secret-pregnancy/), found Ethan and I grasping to understand what had happened. And with an arsenal of medications and a new understanding of cardiac terminology, I picked up my broken heart and headed home.

 xo

 

 

 

 

When I started writing this post, I was 26 weeks pregnant. For the first 19 weeks, I wore baggy clothing to hide my rapidly growing belly. I tried to make excuses to my 5 year old for why I couldn’t pick her up and dance around the kitchen. I did all I could to hide suspicions from the sweet parents at Daisy’s school- I didn’t want anyone asking me if I was pregnant, in front of Daisy. We needed to protect her. Because 9 months ago I was also pregnant. And at 16 weeks, when we thought it was “safe”, we told Daisy. A baby sister was coming, we told her. Her face lit up like Christmas morning. We posted on Facebook an adorable picture of Daisy holding a sign saying she was going to have a baby sister. People were so kind and supportive. It’s like our amazing community breathed a sigh of relief- “they would be ‘okay’ because they were going to have another baby” many probably thought. There were also shakes of the head- like “haven’t you people been through enough?” “Why tempt fate again”….

But fate we did tempt. And sadly, it wasn’t to be. Two weeks later, there was no more heartbeat. No more Christmas morning, and we had to break our daughter’s fragile heart again.

This time was going to be different. We would keep the pregnancy a secret as long as we possibly could. My belly was big. Daisy even commented that my belly was growing. We waited until 20 weeks, until after I had done the anatomical screen and we saw with our own eyes how his heart and brain were growing. How his organs, arms, and legs were all where they were suppose to be. Even then we were nervous to tell Daisy. She expressed happiness, but it was guarded. Just like our hearts are guarded. “I hope it doesn’t die like Ezra and baby sister did…” This was the first thing Daisy said after we told her. Death. Our daughter’s first worry is for death.

Many people have a vision for how they picture their families in terms of whether or not they want children, and if so- how many. Some want one. Some want 4 or 5. We always knew we wanted at least 2 kids. We thought Ezra completed our family, and sadly after he died, we knew we needed to keep trying. Not to replace him. No one can replace Ezra. Not to “make it okay”. Nothing will make losing our baby son “okay”. But because our family, and our hearts desire another child.

I am finishing this post now- 10 weeks later and our family has suffered another tragic loss. Last Wednesday, I had a sense that the baby boy that had been thriving in my belly had fallen a little quiet. My struggle this entire pregnancy has been trusting that everything would be okay. That this child would be born healthy and strong. So I contacted my midwife and she came over, Doppler in hand. We immediately could hear his heart beat- strong and steady. Tears flowed down my cheeks as this is the most reassuring sound in the universe. The next day, he still seemed quiet to me. I called my midwife again and she recommended I go in for an ultrasound- just to put our fears to rest.

A trip to the L&D floor. The Doppler is rolled in. No heartbeat. The OB comes in with an ultrasound machine. There it is- his 4 chamber heart- once fluttery and active is now dark. It feels like the room is closing in around me. I was 36 weeks pregnant. He was a healthy, active little boy. We had allowed the fragile veil of hope to blanket us and in a matter of minutes, we find ourselves raw and angry and devastated. Yet again.

And then came the worst part. Having to tell our Daisy that again our baby had stopped growing. The sound that came out of her mouth was heart wrenching. It makes me shudder just to think of it. We are left wondering, how much loss can her little spirit take? How much loss can our spirits take?

We spent the next 3 days in the hospital using every medical intervention available to drag my body into labor. And then there he was… he arrived just as quietly as he left.

Leo David Bessey… 7 lbs 20.5 inches… he had strawberry blonde hair. Just like his sister. Just like his brother.

Leo was named after my great uncle,  Leonard Granoff. Uncle Lenny was kind, incredibly silly, and very loving. He and my great Aunt Shirley never had children of their own, but they shared a love for the ages. Back in the day, he played the drums in various Big Band groups. He called himself “a man of the cloth” because he worked at a fabric store. I miss his goofy smile, his stories and the way he called me Shana Cup (pretty face, in Yiddish).

Leo’s middle name, David, was my grandfather’s name and it was also Ezra’s middle name. The namesake of three important males in my life whom I miss every day.

And so now, our family of three has to figure out how to let go of the planning and dreaming we have been doing for the last few months. Daisy’s questions of “how old will baby brother be when I’m 12 or when I’m 16 or when I’m a mama” have been replaced with “why am I your only baby who has lived?”

The day after Ezra’s funeral, there was a storm that covered the world in a mountain of snow. Yesterday, a similar storm hit Maine. I lay in bed with the snow and the wind whipping around at my window feeling grateful for the wildness outside. And today the sun shone bright on the peaceful winter wonderland that was created. I can only hope that one day I will stand in the sun and feel a similar sense of peacefulness. For now, that time seems a long way off…

xo

 

Ask any parent to look at a family photo and pick one child to delete from the photo forever- they will look at you in disbelief and shake their head. It’s impossible to do. And no parent should ever have to.

A friend of mine recently asked me how it was making our family’s holiday card. I had actually been thinking a lot about this,  having just ordered our holiday cards and because I know there are many families struggling with this- especially those who have recently lost a child. A holiday card is suppose to capture images of a family, smiling, happy and functional. And there is the problem. Of course, our holiday card has a picture of our family. And yes- there are smiles, and perhaps we were even happy and functional when we took the pictures, but the pictures are incomplete. Ezra is missing.

Families have different ways of incorporating the children they have lost into photos. Some hold framed pictures, others wear specific significant colors. Our holiday cards will always have a heart rock somewhere on them.

The other day Daisy came home from school very concerned about something a friend had told her.

“Mama-my friend said she doesn’t believe in ANYTHING! Not Santa, and not the tooth fairy.”

I reminded her that people can believe lots of different things. I asked her what she believes. Her answer was simple.

“I believe in everything.”

I appreciate that despite all that Daisy has been through, she is still willing to believe.

Everywhere we go, we look for heart shaped rocks. Logically I know that these are just part of nature’s mystery- that sometimes rocks are just shaped like hearts. But, there is a part of me that holds onto magical thinking and I let myself believe that these are little signs of Ezra’s love. And I appreciate when people send images of the heart shaped stones, shadows, and water droplets they find. It’s a reminder to me of how far Ezra’s smile, his love and his spirit has reached.

So, whatever you believe, I wish you a very happy holiday season. From our family, to yours.

xo

I am surprised by how hard Robin Williams’ death has hit me. I think about what he must have been experiencing the moments before he decided he just couldn’t live a second longer. I think about the aching sadness his family must be feeling. And I feel the aftershocks going through the community at losing such a bright light that brought so much joy.

That man could make people laugh. SO freaking hard. He could also portray very complicated characters that were struggling with demons- and he did it with such authenticity that it wasn’t hard to imagine he was doing some struggling on his own.

Suicide is a complicated issue. I believe mental illness is a disease that requires treatment- medications, counseling, support groups. Whatever the formula- some form of treatment is crucial for survival. We can not ever begin to know how it felt to be in his shoes, to struggle for a calming breath or a peaceful night’s sleep. What we can do, and what I have truly enjoyed in the past 24 hours, is hearing the ways that Robin brought laughter to the world. Excerpts from interviews, clips from his movies… so much talent from such a complex mind. Such effervescence and child-like energy. I am so grateful these gifts are his legacy. I am glad that someday I can show Daisy his magic- Dead Poets Society, Good Will Hunting, Good Morning Vietnam… such amazing movies.

“Real loss is only possible when you love something more than you love yourself…”

Today, I was reminded of this line from Good Will Hunting. It means something completely different to me now than it did when I first heard it back in 1997. I was just graduating college. Good Will Hunting is still, to this day, one of my favorite movies of all time. A few years later, while doing my second year with the AmeriCorps NCCC program, I watched When Dreams May Come while on a project in Puerto Rico during Hurricane George. This movie completely messed with my head. I cried from the first 5 minutes of the film until 4 hours after the film ended. At that time in my life, I had never experienced anyone I deeply cared about dying. Yet this film tapped into a waterfall of emotions. Robin Williams had this ability.

My mother, my father, my very dear friend Shira, and my son… oh, my sweet son. All losses that came way too soon, and have shaken my core. That have made me look at the world through a totally different lens. Losses that collectively have changed the person I am, for better and for worse. Real loss.

And though I’ve never met Robin Williams, I know nothing about the man he was in the privacy of his home when the cameras were turned off… I do know that his death, too, is a real loss. For me and for the world.

 

Ezra was here. He was tangible and beautiful and full of light. He was Ethan’s son and Daisy’s brother. He was my sweetest boy. He was here. I could touch him and smell him and kiss his dimple. I miss his toes and his little sounds. His onsies in the wash. I even miss the sleepless nights.

IMG_5658

I can not describe how surreal it feels to have my child die. When my mom died, it was- and continues to be- a hugely challenging loss. I believe there is absolutely no ranking of loss- one is not harder, or worse than any other… But in thinking about my experience, losing my mother made more sense. She was only 52, but in the order of life, I am suppose to grieve my mother at some point.

IMG_8272

I am not suppose to bury my child. My 8 month old son. Ezra should be turning 2. He should not be frozen in time as a baby, but rather out exploring his world. Learning to interact with others and figuring out ways to express himself. Ezra is still part of our daily lives. Daisy talks about him through her day. She colors pictures for him and writes books about him. We watch the videos over and over and over and over again. And of course, there are pictures of Ezra everywhere. My ache for him is so overwhelming at times.

IMG_5151

Since Ezra’s death, I have been very tuned in to other moms experiencing loss. Recently, I was put in touch with a beautiful mama in Austin who’s son was killed in a tragic car accident. Her son was not born with a genetic disease. He was growing and thriving and was about to start high school… my heart just breaks for her. Like I said before- there is no ranking of loss, it is all so very hard. The fear and worry can be consuming- and at the root of it is this underlying reality that gone are the days of assuming things will “work out for the best” or that “everything will be okay”. Things aren’t always okay and we have little control over any of it.

Lifting the veil on how heartbreaking real life can be does not mean that I need to go through my life being cynical and angry, never risking heart break again. I think this is the challenge of grief. When handed a loss, the choice arises to either become consumed by the grief, or to figure out how to integrate the loss into living. Our loved ones would want us to keep living. And although I hold irrational fears about keeping Daisy safe, and although I miss Ezra every minute of every day, it is important to keep living. It feels good to laugh… and I mean tears-in-my-eyes-can’t-catch-my-breath-full-body-shake laughter. It also feels good to dance. Our family loves to boogie in the kitchen… and as I watch Daisy pirouetting around in fancy tutus, I can picture Ezra smiling at her as she creates new moves, filling the kitchen with joy. Living through loss is hard. Most happy times have a bittersweet aura to them. But still, there are happy times. And there will be more happy times to come.

So, on this, what would be Ezra’s 2nd birthday, I will choose to live through our loss. And rather than succumb to the bitter, I will hold on to the sweet.

xo

PS: Last year on Ezra’s birthday, I put together these photos…

https://ezradavid.wordpress.com/2013/05/30/snapshots-of-ezras-life/

 

Follow

Get every new post delivered to your Inbox.

Join 608 other followers