Today we are honoured to share a guest post from Brad Hansen. Below you will find the words of his story about his incredible son. He’s a member of the #ShitClub and as a part of Pregnancy and Infant Loss Month (October) we express all the gratitude to Brad for sharing his story with us.
When Julie and I first learned we’d become parents, it was a bit of a surprise. We hadn’t planned on it and the whole idea was a bit jarring for us, but we wholeheartedly welcomed and embraced it once it sunk in and became our reality—we had a kid on the way! Woo hoo!
She started to feel the ill-effects of the pregnancy early on. I was making grits for her nearly every morning because it was “nutrient-dense yet easy to digest,” as she would say. She also enjoyed her smoothies and milkshakes, which I was happy to bring her every so often. First pregnancies are often difficult, and Julie’s was no different.
We tossed around some names and even started thinking about different places we would raise our new “turnip” as we liked to call him. We were nervous, scared and happy. And despite the fact that we weren’t yet married (although we would be the following year), we were ready for whatever this kid was going to impart on our lives. We were going to rise to the occasion.
We had no idea how much we would be tested on our readiness for this kid until the morning of Friday, April 27, 2012. That’s when all of our lives began to veer off on a very different course.
Everything seemed fine up until then. Julie had a beautiful belly bump and we had absolutely no clue anything would be wrong with our Turnip leading up to the 20-week anatomy ultrasound on that particular Friday morning. We were sitting in the waiting room, chatting about what we would be doing the rest of the day after the appointment was done. We joked as we often would. It was completely a routine morning.
Once we got into the room and things got going, the radiology tech, taking the images and measurements of Turnip’s anatomy, didn’t say anything about what she saw, which we knew was normal. What was a bit odd to us is that she barely said a word, nothing. Julie and I did notice the curved upper arm and femur bones and expressed a slightly nervous “oh isn’t that cute” to each other upon seeing it. But we still got no reaction from the radiology tech, which we were desperate to receive in that moment.
After she left, we waited no more than a minute or 2 and the radiologist came rushing in and started scanning, then quickly switched to the 4D scanner. We started to feel a little more panicky at that point and knew there was a sense of urgency from the radiologist for a reason. She was equally silent as the tech was, which just made us even more nervous.
Finally. Finally, she put the ultrasound wand down and said, quite plainly, “I’m sorry to tell you this, but your son has what I believe is Osteogenesis Imperfecta and he won’t survive. This is a terminal diagnosis. Again, I’m sorry. We will leave you now, take your time. Here are some tissues. We’ll have someone lead you out a separate exit so as not to upset the other expectant mothers in the waiting room.”
And that was that.
I’m usually a glass-half-full kind of person, but nothing seemed “full” about this situation. It all just felt completely icy cold, empty and isolating. I saw no upside here. What was I left to do?
As I cobbled myself together as best I could, I decided that I certainly was going to fight for our son. Call it a first-time or forever father instinct or an amygdaloid fight response, but it kicked in, whatever it was. How does that radiologist know he’s going to die? How can she possibly make a complicated diagnosis like that based just on ultrasonic images? I had friends who have Osteogenesis Imperfecta and they weren’t only surviving, but thriving. I was going to get to the bottom of this. Ohhhh, was I ever DETERMINED.
So we went through genetic testing and, come to find out, our son didn’t have Osteogenesis Imperfecta—he had Thanatophoric Dysplasia, which in Greek means a “death bearing” abnormality. So while the radiologist’s diagnosis was wrong, her assertion that our son wouldn’t survive long after birth was correct.
That confirmation, one way or another, allowed me to exhale. Finally. Everything started to come out of me. I felt like I was vomiting tears. I was a total mess. It was difficult to simultaneously keep myself together on the outside while feeling like a part of me was being ripped apart and dying off on the inside. I felt completely alone and isolated. It felt like I’d never be able to reconcile these 2 worlds of expectation vs. reality. It all just felt so impossible and heavy. How was I supposed to lift myself out from underneath it? It just seemed hopeless. My son was going to die, he had no idea that he was going to die and I’m just Gutted. Completely gutted from the inside out. On top of that, I was going to be one of “those” parents whose kid died and I’d have to navigate all the social stigma and weirdness that goes along with all of that for the rest of my life. I was on the verge of crumbling. I had no idea what to do next.
Julie and I had planned a quick weekend getaway the next day long before our son’s anatomy scan was scheduled. We just kind of looked at each other, shrugged, and decided to go anyway. I guess we figured maybe the change of scenery would help us somehow in that moment.
It did, but the lingering, heavy cloud of life and death also followed us all weekend. Still, we looked for catharsis. And we didn’t give up. In fact, it was that weekend that a certain song grabbed our attention and our hearts for which we still look back on with a sense of gratitude today. “I Won’t Give Up” by Jason Mraz played on the radio many times as we were driving around that weekend and sort of emerged as our fighting call for Sammy. We realized that, although it will be difficult, somehow we needed to learn to accept our son’s death and focus on what we can give him between now and when he does die. That’s the best we can do for him as his parents.
We took him to a Coldplay concert, which was all that and more!
We read books to him.
We brought him to a brass band concert, which he showed his appreciation for by kicking to the beat of the drums.
We sang to him.
We talked with him.
We took him to travel long distances to hear his relatives’ voices, to hear the people who love him. He flew on a plane several times, too!
He went to his cousin’s baptism.
He and Julie went swimming together. A lot!
He heard the roars of the crowd, the cracks of bats hitting baseballs and the celebratory “Sweet Caroline” played at a Red Sox game.
He went on hikes through the forest, heard nature at her finest and swung on the swing at the playground.
He heard us all yell “surprise!” at his Gram’s surprise 60th birthday party.
He heard the ocean
He heard the rain
He felt the warmth of sunshine
And hopefully all love and little pain
Even our cranky geriatric cat often snuggled up next to him at Julie’s belly to express his love.
We felt a calling to give him whatever we could, big or small. We just wanted to give him everything that we could—we wanted him to know only love.
We felt so grateful to be looped into the all-volunteer pediatric palliative care team at the hospital where Sammy would be born. They knew our son’s diagnosis and cleared a path free of hospital rules and bureaucracy for his birth and death to become everything that it was. And they’ve been there for us years later, too. (As a side note: palliative care teams are absolute gems, especially in the pediatric realm. These folks volunteer their time, energy, compassion and pretty much all of themselves without any additional compensation to pull strings and be present to grieving families, day in and day out. They are truly special souls in this world. If you find a pediatric palliative care team at a hospital near you, please support them and thank them for all that they do!).
Samuel Paul was born at 3:29 pm on August 10, 2012. The second he was born he was-a-screamin’! For someone who had underdeveloped lungs, he sure could wail!
Everyone in the room showered him with love. There were lots of “awwww’s” and “there there’s” from all the medical staff. It was as amazing as it was special.
For a split second, I felt contentment. It seemed like he was going to stick around. It just felt like a natural, beautiful birth.
Then they brought him to me and Julie. He continued to cry just as any newborn does and he stared directly into each of our eyes, showing us just how much he already knew who we were. He looked at us and listened to us as we spoke with him. He paid attention to our voices and followed our every word as though he knew nothing else.
As part of our work with the pediatric palliative care team leading up to his birth, we’d made a playlist of songs that we wanted Sammy to hear while he was with us. He heard The Beatles, Mumford and Sons, Jason Mraz, and of course Coldplay, among many others.
We cried. We talked with him. The medical staff cried. The medical staff talked with him. Sammy settled in and just took in everything in his own very Sammy way. And I mean he took in Everything. He was just absolutely amazing. The bravery and courage he displayed is what creates legends. He had it. He had it all.
We just let him be with us and us with him, and just take in as much of this life as he wanted to. And he did. He really, really did.
He slowly started getting sleepy. He drifted off as the doctors unobtrusively monitored him. And he died in my arms less than an hour later.
I cried again. And again and again and again. I was so incredibly grateful to be in his presence during his short time with us, but I was also just gutted. I became an abridged state of myself. Part of me died with him. And I knew, unequivocally, that that part of me would never come back. I was just lost and listless, a ship without a rudder.
I clung to whatever positives I could unearth. It was a coping mechanism, but it helped.
Although not every situation or pregnancy allows it, we did feel very fortunate that our unique circumstances afforded us catharsis, letting him go on whatever terms he gave us. Having that time and having those choices are gifts that are absolutely not lost on us.
We also participated in a bereavement group at the same hospital where Sammy was born. I wouldn’t normally be up for something like that, but I just wanted to connect with other grieving parents who understood what this was like. Although our stories are all a bit different, there is a commonality we all share. I’ve always considered this experience my most beautiful scar. And the bereavement group allowed me to share it with other parents who had their own beautiful scars that they shared with us. It was a pretty transformational experience for me. One that I didn’t necessarily expect at the time.
Since Sammy was born, Julie and I have welcomed 2 additional amazing (and equally strong-willed) kids into our family. They’re both aspiring rock stars just like their older brother was. It’s certainly a sight to behold and witness as we think back to Sammy and their strong connection to him.
Just through the process of writing this all down and sharing it with you, I feel another burst of emotional release. And over time, as I let go of more and more, it gets easier and easier to sit with my grief, to be less blinded by tunnel vision and to even find more and more joys remembering and thinking about Sammy. It becomes more an act of self-care to sit with and express these feelings—it becomes more peaceful and less painful.
As men, we’re conditioned and rewarded for keeping our feelings hidden, away from view. It’s considered a weakness to be associated with “feelings.” And boys and men are brutally ridiculed, bullied and made fun of for expressing any sort of feelings other than anger.
But expressing grief, in whatever form that looks or feels like, isn’t weak. It’s Strength. In fact, there is nothing stronger than expressing vulnerability. Being vulnerable is the Strength of All Strengths. It’s restorative. It’s the Master Strength.
Just as our physical bodies need exercise, our brains and hearts need to be exercised too. Each time we express our grief, or any feeling from a position of vulnerability, it’s no different than doing a set of push-ups or running a couple of miles. The more we do it, the stronger we become. We experience less resistance and the exercise becomes much easier the more we do it.
We also need to spot and coach each other more.
Instead of punishing and shaming our male friends, family or even acquaintances or strangers for daring to have the courage to openly share their feelings, Encourage Them. Listen to them. Support them through their expressions of emotions, in whatever forms they may be. Hug them if they need a hug. We can and should connect this way. It’s just incredibly human, natural and healthy to want to feel connection. We should never have to feel shame because of that.
Fearing our emotions causes an immense amount of collateral damage to those around us, to those we love—not to mention the self-inflicted harm it causes. Once we learn to accept our emotions, we can learn how to process them in more positive ways. Working through grief is one of the more Herculean challenges in life. But any of us can do it with plenty of practice, exercise, patience and a generous amount of spotting and encouragement from each other.
We’re all better off if we learn to become better at lifting each other up, at filling each other’s glasses. It pays dividends to us all. In the end, that’s the kind of world I would want Sammy to grow up in. And I’m pretty sure most of us would, too.
A native of Madison, Wisconsin, Brad Hansen is now a New Englander at heart living in suburban Boston with his wife, their 5-year-old son and 3-year-old daughter. He’s a full-time at-home parent and a part-time personal finance counselor. He can be reached at email@example.com.