Jan 23Liked by James G. Robinson, Leigh Kamping-Carder
“And we suddenly found ourselves thrust into an entirely new community—one centered on grief, not hope. Our world no longer revolved around sats or pressures or procedures. It felt like exile.”
You've described one of my most surprising, most specific fears. The fear of losing my son is immeasurably heavy, but so is the desperation I feel when I imagine trading in my heart mom card for a loss mom card.
As I type, we're in the thick of it with our 5 month old, Henry. He’s home post-Glenn, with a collection of minor complications. I very often wonder how long I will have not just with him, but on the side of hope—as you described.
Our heart baby friend from the hospital, who was born the same day as Henry, passed away a few weeks ago. Miles' mom and I used to talk every day, swapping updates and cheering on our boys. When Miles died, I naively (and selfishly!) worried his mom wouldn't want much to do with me. Surely the continuation of Henry's journey would make the end of Miles' even harder to handle. But of course I was wrong. All of us heart parents are hope-seekers, even after the unspeakable happens. You and this post are testaments to this.
It seems to me that in the heart world, the line between hope and grief is thin, bumpy, and impermanent. As a heart parent, I could switch sides tomorrow, next month, in five years like you did. And yet, I agree with you: this journey is a privilege—regardless of the outcome. Moments, days, years with a member of our family who wouldn’t otherwise have seen the world outside a hospital room? Miraculous. Impossibly hard, but still miraculous.
Thank you Leigh for allowing space for heart parents in this incredible community you have built. And thank you for sharing this, James. I'm eager to read your memoir and I’m so sorry Nadav isn’t here.
Jan 21Liked by James G. Robinson, Leigh Kamping-Carder
Thank you for sharing your story James. I am so sad your son was not one of the ones who made it longer on this earth. When I went to my first ACHA (Adult Congenital Heart Association) conference, there was a memorial time where the names of those in our community who had died over the last year (at least the ones we know about) were read. As a survivor, it was sobering. It was the first time I was around others like me in a group. The journey is indeed easier in community.
I look forward to reading your book. I can relate to your description of your son as an old soul.
One night our family had gathered yet again around our young nephew who had brain cancer to pray for him before yet another round of treatment. I was positioned behind his dad, so little Joel was facing me on his daddy's shoulder. He had those unbelievably wise, calm eyes of an old soul also. I had no way of knowing that I would have an emergency later that night, and would end up being ambulanced an hour away to an ACHD clinic for surgery. I don't remember much, but the look in that little boys eyes stuck with me those 24 hours and somehow brought me peace and calm. I imagine the same is true of your boy; that his life spoke to many more than you are aware of in ways that are beyond understanding. Each life, however long, is a gift.
Jan 21Liked by James G. Robinson, Leigh Kamping-Carder
Thank you for sharing your story James and your pain publicly. It is a story we all need to know. The CHD community and the struggles they face are often invisible.
I am a parent of an adult living with a CHD. Each birthday they experience is acknowledged as “I did it!” I lost count of all the medical interventions and being in crises mode our son and family faced. I was always bracing myself for such a loss as yours. Now he navigates this journey with his personal knowledge, lots of healing meditations, and with the love and support from others.
I have witnessed our child surviving and others not. Scientific breakthroughs can’t come fast enough. Enough CHD healthcare workers can’t be educated fast enough. I have no easy answers, but I know advocating for the CHD community helps me put my angst into action. That is one reason I serve on the Adult Congenital Heart Association, Patient and Family Advisory Board. Some things in life cannot be fixed. They can only be carried. - Megan Divine.
I try to live the serenity of these words, while trying to fix it too. What can I say.
Thank you James, for writing your book. Condolences to you and your family.
“And we suddenly found ourselves thrust into an entirely new community—one centered on grief, not hope. Our world no longer revolved around sats or pressures or procedures. It felt like exile.”
You've described one of my most surprising, most specific fears. The fear of losing my son is immeasurably heavy, but so is the desperation I feel when I imagine trading in my heart mom card for a loss mom card.
As I type, we're in the thick of it with our 5 month old, Henry. He’s home post-Glenn, with a collection of minor complications. I very often wonder how long I will have not just with him, but on the side of hope—as you described.
Our heart baby friend from the hospital, who was born the same day as Henry, passed away a few weeks ago. Miles' mom and I used to talk every day, swapping updates and cheering on our boys. When Miles died, I naively (and selfishly!) worried his mom wouldn't want much to do with me. Surely the continuation of Henry's journey would make the end of Miles' even harder to handle. But of course I was wrong. All of us heart parents are hope-seekers, even after the unspeakable happens. You and this post are testaments to this.
It seems to me that in the heart world, the line between hope and grief is thin, bumpy, and impermanent. As a heart parent, I could switch sides tomorrow, next month, in five years like you did. And yet, I agree with you: this journey is a privilege—regardless of the outcome. Moments, days, years with a member of our family who wouldn’t otherwise have seen the world outside a hospital room? Miraculous. Impossibly hard, but still miraculous.
Thank you Leigh for allowing space for heart parents in this incredible community you have built. And thank you for sharing this, James. I'm eager to read your memoir and I’m so sorry Nadav isn’t here.
Your story may be different, James, but it's no less important or worth telling. Thank you for sharing. Nadav's memory is for a blessing.
Thank you for sharing your story James. I am so sad your son was not one of the ones who made it longer on this earth. When I went to my first ACHA (Adult Congenital Heart Association) conference, there was a memorial time where the names of those in our community who had died over the last year (at least the ones we know about) were read. As a survivor, it was sobering. It was the first time I was around others like me in a group. The journey is indeed easier in community.
I look forward to reading your book. I can relate to your description of your son as an old soul.
One night our family had gathered yet again around our young nephew who had brain cancer to pray for him before yet another round of treatment. I was positioned behind his dad, so little Joel was facing me on his daddy's shoulder. He had those unbelievably wise, calm eyes of an old soul also. I had no way of knowing that I would have an emergency later that night, and would end up being ambulanced an hour away to an ACHD clinic for surgery. I don't remember much, but the look in that little boys eyes stuck with me those 24 hours and somehow brought me peace and calm. I imagine the same is true of your boy; that his life spoke to many more than you are aware of in ways that are beyond understanding. Each life, however long, is a gift.
im speechless
Thank you for sharing your story James and your pain publicly. It is a story we all need to know. The CHD community and the struggles they face are often invisible.
I am a parent of an adult living with a CHD. Each birthday they experience is acknowledged as “I did it!” I lost count of all the medical interventions and being in crises mode our son and family faced. I was always bracing myself for such a loss as yours. Now he navigates this journey with his personal knowledge, lots of healing meditations, and with the love and support from others.
I have witnessed our child surviving and others not. Scientific breakthroughs can’t come fast enough. Enough CHD healthcare workers can’t be educated fast enough. I have no easy answers, but I know advocating for the CHD community helps me put my angst into action. That is one reason I serve on the Adult Congenital Heart Association, Patient and Family Advisory Board. Some things in life cannot be fixed. They can only be carried. - Megan Divine.
I try to live the serenity of these words, while trying to fix it too. What can I say.
Thank you James, for writing your book. Condolences to you and your family.