This post is written by Ethan, Ezra’s dad…

February is a dark time for our family, or at least it has been over the past few years.  Four years ago today we lost our son Ezra to Spinal Muscular Atrophy (SMA); he was 8 months and 6 days old.  Time is supposed to heal all wounds, and I guess there is truth to that, but on anniversaries like this one it feels right to let that wound open a bit to reflect on Ezra and feel, as deeply as I can allow myself, this sadness and loss. 

We never had anything like this growing up, no traumatic events to commemorate.  It wasn’t until I met Emily (whose mother and grandmother both died within a year before I met her) that I started to see what these anniversaries were like.  Even then it was foreign to me, holding her in tears as she let herself feel the loss all over again like it just happened.  All I could do was be supportive and quiet. 

Now four years after Ezra died our home is filled with photos of all our kids, including Ezra.  We even have a sonogram of Leo.  We have a collection of heart shaped rocks that have become a fixture on the counter, and our basement has all of the Hearts for Ezra signs and gear for our events that we put on.  It’s easy to see all of these things on a daily basis and maybe have them lose their meaning. 

But looking at the photos of Ezra, and one series of photos in particular, I remember going to Portland to do a family photo session with the husband and wife team that did our wedding photos.  I remember that day so vividly, smiling and trying to hold Ezra upright (since he couldn’t sit up) so we could get some great shots.  And we did.  I also remember the sadness and dread of thinking how someday all we would have would be these photos.  And now that’s true.  They hang on our walls, and I walk by them daily, but today I will take a moment to look a little longer and think about that little nose, that funny laugh, that red hair. I’ll try to let myself feel.   I am also thankful for Jeff Dachowski for these photos that will forever capture that very precious moment in time for our family. 

The pile of heart rocks on the counter is in the worst place in terms of counter space management.  It’s actually a little smaller than it has been, but if you look in a few cabinets and in the garage you’ll find dozens upon dozens more.  It’s part of our home, a pile that I see every day and at times it’s just in the way.  But today I’ll read the names or places written on each one and remember that each rock was given to us by a friend to send their love.  I try not to lose sight of the fact that our story touched people in our community as well as from all over the country.  Through Emily’s blog people learned about Ezra and SMA, and we still get rocks and photos of heart shaped objects sent to us often.  When we go to the cemetery Ezra’s headstone is pretty unique; covered in heart shaped rocks left by visitors, most with names or places written on them.  I feel grateful to all of our friends and community, both here, in Austin and across the country (the world even) for being thoughtful, caring and supportive. Because of you I try to be more empathetic to those going through tough times and loss, and I hope to be able to offer even a fraction of the love and support that we were given by you, our friends.

And the Hearts for Ezra signs that we tuck away after each event were made by dear friends who answered the call when we started a foundation to raise awareness to fight SMA.  We, like some other families who lost children to awful diseases, wanted to help make a difference in the world, to bring something good out of our unspeakable loss.  We started Hearts for Ezra before Ezra died and really didn’t know what impact we would have, but we wanted to do something.  Now, four years later, we’ve raised over $40,000 for Cure SMA and Emily and I have shared our story (and the amazing video that my cousin Matt Thompson created) with groups from Maine to California.  Within the past few months there have been promising developments in drug treatments being approved to slow the progression of SMA.  We are rightfully sad that this wasn’t a possibility for us with Ezra, but there is some satisfaction in knowing that our small part made some of this possible just a few years later, and that other families may not have to experience what we did.  Those signs and banners and hula hoops and donation buckets are in storage now, but today I’ll reflect on the community that came together to help us raise awareness about a disease that very few of us had ever heard of before.

This may be a dark time of year for our family, but we have bright days ahead.  At the risk of sounding like a commencement speech, today is a day that I look back at what was and what happened, but also look to what we have now and what is to come.  I miss my boy.  I wonder what he would be like or how our lives would be different had he lived.  I wonder what Leo would have been like or if he would have looked like Daisy, or Ezra.  I am so thankful for our Daisy, our loving, empathic, energetic and funny 7 year old.  I am so lucky to be dad to both Daisy and our little Ruby, who greets me every day when I come home with a squeal and “Dada dada!”.  And I am forever in awe and in love with Emily, now more than ever.  We let ourselves feel the pain of this wound and look back with heartache and sadness, but also with happy memories and gratitude for everyone who has stepped outside of themselves to lift us up. 

“And the days that I keep my gratitude higher than my expectations. Well, I have really good days.” – Ray Wylie Hubbard

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It has been 2 years since he died (My Secret Pregnancy…). Leo’s death was so different from Ezra’s. We were able to make memories with Ezra. He met our extended family and friends. I nursed him, Ethan changed his diapers, Daisy read to him. Ezra was here. Leo disappeared before he arrived. One day I could feel him, active and strong. The next day… stillness. I carry so much self blame around Leo’s death. I knew something was wrong. I called my midwife and she came over. We heard his heart beat, strong and steady. But, I didn’t push to go in for an ultrasound. Regret is such a dangerous trap. I go round and round in my head. And even though I rationally know it will do me no good to go down this road, I can’t help myself. There is no way I can ever know if going in to see the doctor sooner would have saved Leo. And because of that, I carry his death differently. Have you ever regretted something so deeply that you know no matter what your spouse says, what your therapist says, what the doctors say- the regret is stuck? Regret like this can ruin a person. But I’ve done enough therapy to know that to some degree, I hold onto this regret intentionally because it means I have some element of control. If I had gone in, maybe they could have saved him. Not believing that means that everything is out of control and a healthy full term 36 week baby boy can just disappear. Without any answers as to why. Ethan and I couldn’t prevent or “fix” so much of what has happened to us. We didn’t know we were carriers of SMA before we got pregnant with Ezra (though now carrier screening is readily available: www.counsyl.com). Until he was 4 months old, we didn’t even know that we had passed this awful disease on to him. And then we couldn’t stop the disease from killing him. We certainly couldn’t have anticipated or prepared for my heart attack (My Broken Heart…). So, I grasp for control where I can find it. If I couldn’t protect Ezra and Leo, what makes me think I can keep Daisy and Ruby safe?

I know I will grieve my children’s deaths forever. Yes, the grief changes shape, but it never goes away. I remember being very worried about this when Ezra first died. How could I ever feel joy again? The sadness and emptiness in my heart seemed to override any happiness. But I have seen that I can hold both. Thank goodness- because there is a lot in life to feel joy over. As I’m writing this, Ruby is waking up from her nap and Daisy is upstairs cracking her up. The two of them love each other so much. Just listening to them laugh fills me up. Life is so complicated and beautiful and painful and sweet all at the same time. And yes, we did go on to adopt Ruby after losing Leo. But, please don’t entertain the thought that Leo’s death happened for a reason (Everything happens for a reason…). We are thankful every single day for these two vivacious, hilarious little girls. We are able to hold that love and appreciation  with the sadness over losing our boys. We can do this without justification or explanation.

This is a very challenging week for us- so many difficult anniversaries. Of course, anyone who has experienced a profound loss knows the grief feels the same in August as it does in February. But there is something about the return of the day the trauma happened. It leaves an imprint on our subconscious and I find that my heart remembers before my head does. I’m quick to tears, or I feel irritable. Then I check the calendar and it all makes sense. So many people that I love have reached out- they get it. They might even feel it too, in their own hearts. But we will get through this season of loss-buoyed by the love we feel from our community, and each other.

xo

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When Ruby came home from the hospital (Leap of Faith…) she weighed under 5 lbs. Following the instructions given to us, we were feeding her every 3 hours- mixing up jars of smelly formula, waking her up if needed to make sure she got enough to bulk up a bit. Ruby was gassy and uncomfortable. Because her adoption happened so close to losing our son, Leo I had a sense that I could probably start producing breastmilk, but after my surgery (My Broken Heart…), I was nervous for how it would affect my hormones and how that would affect my heart. I called the milk bank, but paying out of pocket for breast milk was incredibly expensive. I researched formulas and learned that Germany has 2 brands of formula that are suppose to be much more gentle on newborn bellies. The problem became access. There is one American based website that sells it, but they sell out minutes after posting they have it available. A friend in Germany sent me a few boxes, but I realized it just wasn’t sustainable. Then, an amazing woman in my town contacted me and said she had an abundance of milk she had pumped and there was no way her son could ever drink it all. I was overwhelmed by her thoughtfulness and generosity.

We began shifting Ruby’s bottles to breastmilk. And the change for Ruby was incredible. She was so much more comfortable and her system was running more smoothly, if you know what I mean. I became focused on accessing as much breast milk as I could. I put the word out to local moms that I was on the hunt for breastmilk. A friend in Portland offered to pump for me, which was so thoughtful. And then a friend contacted me and said her midwife had a client who had a sister who had visited and left a bunch of pumped milk. Okay. Accepting milk from friends felt very different than accepting milk from a woman I had never met. I decided to take the risk and go for it. By this point Ruby was no longer having formula and she was such a happier baby. I became a mama on a mission for breastmilk. I discovered a Facebook page called Human Milk for Human Babies (http://hm4hb.net/). I posted my need and moms with milk responded directly to me. I also responded to posts from moms who had extra milk to share. I was constantly searching for milk. The very first woman I met through this site lived about an hour from me. She had learned midway through her pregnancy that her baby was not going to survive after delivery. She carried the baby to term and delivered a stillborn son. This woman made the incredibly selfless decision to pump for a month and donate her milk to a baby in need. Ruby was the recipient of this mom’s milk. We were both in tears when we met. This was such a circle of experience and I was overwhelmed with gratitude for her gift.

Accessing milk became a huge focus of my day. I kept checking the site to comment on offers. I’d meet women at all times of the day and all over the place. I’d give them a gift card, and they would fill my cooler with milk. After a few weeks of connecting with women from Bangor to Portland, I had gathered enough donated milk that I needed to buy a deep freezer to make sure we properly stored the milk. At this point Ruby was 3 months old and I just kept telling myself we would do our best to keep her on breast milk for as long as possible. My goal was to get her to a year. There were a few times when we traveled that I was very nervous about keeping the breast milk properly frozen. We traveled to Austin and I was able to find a milk donor about an hour away who provided enough milk for Ruby for an entire week!

This week, Ruby turns 14 months old and I defrosted our last bag of breast milk. Aside from the important benefits I know Ruby has gotten from the breastmilk, a huge gift of all of this was meeting the incredible women who shared their milk with us. A few local women I met continued to pump for Ruby. Every few months I would meet up with them and we would restock our supply. One woman I met, who shared hundreds and hundreds of ounces of milk with us ,was a surrogate for twins. These are wonderful, loving woman who have made such an impact in our daughter’s life. I am forever grateful to them.

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xo

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Dear Ezra,

Today should have been your 4th birthday. Your beautiful red hair might be shaggy. You might love snuggling with your sister on the couch as she reads to you. Maybe you’d be really into building lego creations with your dad. You definitely would be bringing joy and love to our family. There is this wall of time that keeps growing with each passing day, week, month. What I wouldn’t give to break down this wall and have just a few moments with you again. So many things tell me that a great deal of time has passed. Little boys your age are now running and wrestling and driving their big sisters crazy. I have to scroll back further and further on my phone to see photos of you. Daisy seems so little in those pictures. But you are frozen in time. You will forever be 8 months 6 days old. We have adopted a little baby girl. Not to replace you- no one could every replace you, sweet Ezra. But because you taught us how big our hearts could grow. Because we learned that we have the capacity to love another child as powerfully and wholly as we love Daisy. Because Daisy is an extraordinary big sister and that experience was stolen from her. On this, what would have been your 4th birthday, Ruby will be 8 months 4 days old. There is a dark irony to this- and to much of what has happened over the last 4 years. I wish I could have spared you this fate. I wish I could have spared our family, especially Daisy, the pain of losing someone we love so very much. We try hard to keep your spirit with us. We talk about you- especially to Ruby. Your pictures are all over our house. In our dining room, the lights flicker from time to time and we pretend it is you letting us know you are with us. And you are, sweet boy. You reside deep in my heart and I hold you there so tightly and with so much love. I miss you every single day. Every. Single. Day. It is a chronic ache that I can not put into words. If only I could break down this wall of time, for just a moment. To gaze into your big brown eyes, to smell your little toes, to hear your beautiful giggle. Today we will probably head to the ocean. It is where I like to go on anniversaries like this because the ocean is both calming and comforting to me. Being there makes me feel very small in the world and sometimes that just feels good. We will look for heart rocks and pretend they are little love messages from you. Because that is what we do- we look for you everywhere… to connect, to remember, to do our best to feel whole again. I love you.

xo

At a holiday party a few weeks ago, I met a woman who, after hearing that Ezra died, said those 5 dreaded words: Everything. Happens. For. A. Reason.

Here’s some advice, lady: never, ever tell a woman who has had a child (or 2, or 3) die, that everything happens for a reason. My children didn’t die for a reason. Or for some karmic magical twist of faith. They sure as hell didn’t die so Ruby could join our family. My children died because of genetic abnormalities, and rare complications from pregnancy. It was not fate. And it certainly was not for a reason.

I wish I’d had the guts to say that to her face. Instead, I can rant about it here. And maybe educate others to not say those 5 dreaded words. If you don’t know what to say, you can simply say “I’m so sorry” or “My heart goes out to you” or “thank you for sharing your story”. Even if you believe with every single bone in your body that things happen for a reason, resist the urge to say so.

The night of this party, a friend serendipitously sent me an article. It states my point so eloquently. We are coming on the first anniversary of so many traumas- delivering our stillbirth son, Leo on January 24, suffering a heart attack on January 30, followed by open heart surgery on February 1, and our 3rd anniversary of losing Ezra on February 5. How dare anyone say these events happened for a reason. I encourage you to read the article below…

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Tim Laurence, a journalist and psychotherapist, has written a very insightful article where he discusses how much it’s really possible to help someone who’s grieving. He argues that it’s very important for us to be very careful what we say to people dealing with personal pain — the empty phrases we’re accustomed to offer can often hurt rather than help them despite our best intentions.

Tim himself knows what he’s talking about, having suffered huge personal loss at a young age. We think his insights are therefore well worth considering. Take a look.

’Not everything happens for a reason’: The magic words to say when everything’s going wrong

…I’m listening to a man tell a story. A woman he knows was in a devastating car accident, and now she lives in a state of near-permanent pain; a paraplegic, many of her hopes stolen.

I’ve heard it a million times before, but it never stops shocking me: He tells her that he thinks the tragedy had led to positive changes in her life. He utters the words that are nothing less than emotional, spiritual, and psychological violence:

“Everything happens for a reason.”

He tells her that this was something that had to happen in order for her to grow. But that’s the kind of bullshit that destroys lives. And it’s categorically untrue.

After all these years working with people in pain as an advisor and adversity strategist, it still amazes me that these myths persist despite the fact that they’re nothing more than platitudes cloaked as sophistication. And worst of all, they keep us from doing the one thing we must do when our lives are turned upside down: grieve.

Here’s the reality: As my mentor Megan Devine has so beautifully said: ’Some things in life cannot be fixed. They can only be carried.’

Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When illnesses wreck you, you grieve.

Losing a child cannot be fixed. Being diagnosed with a debilitating illness cannot be fixed. Facing the betrayal of your closest confidante cannot be fixed. These things can only be carried.

Let me be clear: If you’ve faced a tragedy and someone tells you in any way that your tragedy was meant to be, happened for a reason, will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life.

Yes, devastation can lead to growth, but it often doesn’t. It often destroys lives — in part because we’ve replaced grieving with advice. With platitudes.

I now live an extraordinary life. I’ve been deeply blessed by the opportunities I’ve had and the radically unconventional life I’ve built for myself.

But loss has not in and of itself made me a better person. In fact, in some ways it’s hardened me.

While loss has made me acutely aware and empathetic of the pains of others, it’s also made me more inclined to hide. I have a more cynical view of human nature and a greater impatience with people who are unfamiliar with what loss does to people.

Above all, I’ve been left with a pervasive survivor’s guilt that has haunted me all my life. In short, my pain has never gone away, I’ve just learned to channel it into my work with others. But to say that my losses somehow had to happen in order for my gifts to grow would be to trample on the memories of all those I lost too young, all those who suffered needlessly, and all those who faced the same trials I did but who did not make it.

I’m simply not going to do that. I’m not going to assume that God ordained me for life instead of all the others, just so that I could do what I do now. And I’m certainly not going to pretend that I’ve made it simply because I was strong enough, that I became “successful“ because I ”took responsibility.“

I think people tell others to take responsibility when they don’t want to understand.

Understanding is harder than posturing. Telling someone to “take responsibility” for their loss is a form of benevolent masturbation. It’s the inverse of inspirational porn: It’s sanctimonious porn.

Personal responsibility implies that there’s something to take responsibility for. You don’t take responsibility for being raped or losing your child. You take responsibility for how you choose to live in the wake of the horrors that confront you, but you don’t choose whether you grieve. We’re not that smart or powerful. When hell visits us, we don’t get to escape grieving.

This is why all the platitudes and focus on ”fixes“ are so dangerous: by unleashing them on those we claim to love, we deny them the right to grieve.

In so doing, we deny them the right to be human. We steal a bit of their freedom precisely when they’re standing at the intersection of their greatest fragility and despair.

The irony is that the only thing that even can be ”responsible” amid loss is grieving.

I’ve grieved many times in my life. I’ve been overwhelmed with shame so strong it nearly killed me. The ones who helped — the only ones who helped — were those who were simply there.

I am here — I have lived — because they chose to love me. They loved me in their silence, in their willingness to suffer with me and alongside me. They loved me in their desire to be as uncomfortable, as destroyed, as I was, if only for a week, an hour, even just a few minutes. Most people have no idea how utterly powerful this is.

Healing and transformation can occur. But not if you’re not allowed to grieve. Because grief itself is not an obstacle.

The obstacles come later. The choices as to how to live, how to carry what we have lost, how to weave a new mosaic for ourselves? Those come in the wake of grief.

Yet our culture treats grief like a problem to be solved or an illness to be healed. We’ve done everything we can to avoid, ignore, or transform grief. So that now, when you’re faced with tragedy, you usually find that you’re no longer surrounded by people — you’re surrounded by platitudes.
So what do we offer instead of “everything happens for a reason”?

The last thing a person devastated by grief needs is advice. Their world has been shattered. Inviting someone — anyone — into their world is an act of great risk. To try to fix, rationalize, or wash away their pain only deepens their terror.

Instead, the most powerful thing you can do is acknowledge. To literally say the words:

I acknowledge your pain. I’m here with you.

Note that I said with you, not for you. For implies that you’re going to do something. That’s not for you to enact. But to stand with your loved one, to suffer with them, to do everythingbut something is incredibly powerful.

There is no greater act for others than acknowledgement.

And that requires no training, no special skills — just the willingness to be present and to stay present, as long as is necessary.

Be there. Only be there. Don’t leave when you feel uncomfortable or when you feel like you’re not doing anything. In fact, it’s when you feel uncomfortable and like you’re not doing anything that you must stay.

Because it’s in those places — in the shadows of horror we rarely allow ourselves to enter — where the beginnings of healing are found. This healing is found when we have others who are willing to enter that space alongside us. Every grieving person on earth needs these people.

I beg you, be one of these people.

You are more needed than you will ever know. And when you find yourself in need of those people, find them. I guarantee they are there.

Everyone else can go.’

 

xo

 

On October 15th, I shared a post on Facebook:
“Ethan, Daisy and I are very excited to introduce you to the newest member of our family, Ruby Rose Bessey born September 26, 2015. We are in love…”

I think we almost broke Facebook! The outpouring of love and support was incredible. I could truly feel the genuine joy that our greater community felt for us. Due to the slightly vague nature of my post, a good friend said that she thought there was probably a lot of people doing math that night… because just 9 months ago, I was still pregnant with our son Leo. Nine months ago, having a heart attack was the furthest thing from my mind. And little baby boy clothes filled the dresser.

But here we are.

For those of you who have followed our story, you know we have been very open about our experiences. From losing our son, to shifting our vision for our family, to delivering our still birth son, Leo, to suffering a heart attack a week later… if you scroll back through my blog, it’s all there.

But adoption is different. This isn’t just about our family, and it feels inappropriate to share details. I can tell you that our daughter, Ruby, is adopted. The doctors were very clear that it would be dangerous for me to get pregnant again. Adoption is a heart wrenching, bittersweet process that brings together strangers in a very intimate way. Previously, when I was pregnant, I took prenatal vitamins. I never ate sushi, or drank alcohol. And despite all my efforts, I learned that sadly, I don’t have any control over the outcome of the pregnancy. You can imagine how hard it is then to have even less control. With adoption, adopting parents have no control over what a birth mother is eating and drinking and smoking. Access to prenatal care can be spotty. It’s all a huge leap of faith. And as a very wise friend of mine pointed out, Ethan and I have no reason whatsoever to trust leaps of faith. So, I have no idea why we thought we should move ahead with adopting. But we did. And now we are home with a beautiful little bundle of amazingness. Daisy has a sister. We are a family of four. Really, a family of 7. Daisy’s been talking a lot about the babies we have lost. She is so wise beyond her years and truly understands the inner emotional roller coaster Ethan and I have been going through since adoption became a reality for us. We love Ruby as though she grew in my belly. Her little sounds, her loud cries, her tiny onesies do remind all of us of the babies that did not get to grow up in our home. And while a few out there may think “oh good- now this family can heal and be all better”, most of you know that there will never be an “all better” for us. Ruby is not a bandaid to make the pain of our losses go away. I would never ever put that on any child. She will grow and thrive in this family- and Ruby will always know that although she did not grow in my belly, we got to her as soon as we could to bring her home. And the home we brought her to is full of love, and sadness, and joy, and gratitude. So much gratitude.

 

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Speaking of gratitude… A huge thank you to Brianne with www.179photography.com/ for capturing some beautiful images of our family… and for the wonderful women at KV Coaching who gifted us this session.

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