I’m spending the winter at Amundsen-Scott South Pole Station in Antarctica. Our station has been in darkness for over three months and the sun will be coming back in a few weeks. Yesterday I wrote Henry’s name on my weather balloon. We don’t recover them; they fly miles up and far away before floating back to earth and being slowly buried by the drifting snow. Henry’s balloon is somewhere on the continent and will probably never be seen by human eyes again. Though we are still in full darkness, the moon was nearly full and the stars were bright, and later that day we had small flickering green and white auroras all across the sky. I think Henry’s balloon had a good view for everything.

THANK YOU SUE!!!!!

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For me, the weekend was wonderful and terrible, all at the same time. It was wonderful to be with all the people who loved Henry the most (Henry’s dad and stepmother came down for the weekend too). But it was terrible for me to look at all the cousins ranging in age from newborn to young adults (yes, we consider the Abernathy fam to be cousins – and apparently we are actually distantly related via the Harris line) and wonder why MY child didn’t make it. I mean, we raised him the same way as all of these other healthy, thriving, beautiful children from this generation of our family, and yet he became addicted to drugs and then he died at only 18 years old.

I love every single one of my nieces, nephews and younger cousins with every fiber of my being. I love them like my own. I am so proud of how bright and accomplished and kind each of them are. It just seems so cruel and random and unfair that things went so terribly awry with Henry, who was surrounded with the same love and adoration that all of his cousins enjoy.

And walking around Bell Buckle, I was constantly reminded of Henry – riding his skateboard around town, eating an ice cream cone downtown, visiting with his great grandmother, playing lacrosse in the Abernathys’ backyard, climbing the giant magnolia tree in my mother’s front yard…

I miss him. We all miss him. The world seems off-kilter to me without Henry in it.

On the way home from Bell Buckle yesterday, C said, “Mama, we need to go to the hospital and get Henry now. He’s all better and ready to come home.”

How I wish that were true.

Created with Admarket’s flickrSLiDR.

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The question I asked in that blog post is now more relevant to me than ever: “Life is indeed suffering. What do we do with that? How do we find joy in the midst of that suffering? How do we accept what we can’t change? How do we even KNOW which are the parts we can’t change? When do we cling for dear life and when do we let go out of love? These are some of the questions I’ve been wrestling with since W’s death, and as I’ve faced my own losses and hurts as a parent since that time. “

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I think I knew right then and there that we would never have him back.

But everyone else was optimistic. Family and friends told me not to give up hope. Optimism grew when he woke up and began speaking a few days later. I will never forget the first time he said, “Hi Mama” after opening his eyes. Henry remained hospitalized for five weeks after that day in the ER. And for most of that time, I was told by the doctors treating Henry that he would certainly live – he had passed the danger period. It became clear pretty quickly that he would be seriously disabled for the rest of his life, but after those first few critical days, no one thought he would die.

No one but me. I thought he would die. I could hardly even admit it to myself, but I just knew. And I think he knew too. He couldn’t speak very much at all, and his ability to express himself grew more and more limited with each passing week, but when we looked at each other, we could each see it in the other’s face – the fact that we both knew what was happening, even if others didn’t.

I am sure that’s why I could not tear myself away from him – ever – during the five weeks he was hospitalized before his death. People kept telling me to pace myself, to go home and rest, to try to stay focused on my job during work hours. “He’ll be coming home,” they would say. “You don’t need to stay at the hospital all the time. You’ll just wear yourself out, and he’s going to be okay. Go home. Go back to work.”

And I tried very hard to take that advice. It seemed rational and reasonable. During those weeks, I knew I needed to be more focused on my work. I knew that at 32 weeks pregnant, I should go home at night, rest, and eat a nutritious meal. But what I somehow knew in my heart – that my son was going to die soon – meant that I needed to be with him every single second that I could before I would lose him forever. So I stayed…and stayed…and stayed. I couldn’t sleep at night until I knew he was asleep for the night. I couldn’t eat unless he had been able to eat that day. I was involuntarily compelled to be with my son in body, mind and spirit – that’s just the way it was and there wasn’t anything I could do about it.

Those five weeks that we had with Henry before he died were a tremendous gift for all of us in our family. At my urging – again because I somehow knew that we needed to draw together around him because we wouldn’t have him with us much longer – his father and I jointly made the decision to mostly limit visitors to just close family. I definitely didn’t want anyone near him whom I believed had in any way enabled or supported his drug use. So mostly, he had just family with him during this time before his death. And our boy was never, ever alone. His father, mother, siblings, stepparents, aunts, uncles, cousins and grandmother were with him night and day. We fed him, bathed him, brushed his hair, rubbed his feet, changed his pajamas, read to him, teased him, played music for him and often, just sat quietly with him. We got to care for our 6 foot tall, teenage boy in a hands-on, physical way. He needed us and we needed him.

I look at photos from the weeks between Henry’s injury and his death and I see so much understanding in his eyes. I truly believe that he cherished the time he had being loved on and yes, babied by the people who loved him most because in the preceding year or two, as his drug use got worse and worse, he hadn’t let us help him like we had wanted to. We all reconnected with him as we tenderly cared for his every need. And he relished this care. For the first week or two after he regained consciousness, there was a peacefulness that radiated from Henry as he enjoyed just being surrounded by unconditional love.

As time went on, he became more frustrated with his increasingly limited ability to speak and to move. He wanted to play his guitar but couldn’t. He became more pensive and began to turn inward.

By the end, he was ready to go. He needed us to let him go. And the photos of Henry from his final days in the hospital, after he once again lost consciousness and was put back on life support are honestly just too painful for me to even look at. Sometimes I force myself to do it, though – to be sure I am remembering everything about our last days and hours together.

The final picture I have of my son is one I did not capture with a camera, but I will carry it in my heart forever. It was just after he left us. The wires and tubes had been removed. We could once again see his exceptionally beautiful face clearly. I hope and pray that he, too was also able to see clearly as he was freed once and for all from the drugs and the pain and from the shame and hurt that had tormented him as his addiction had consumed his life. I hope he could see clearly how much his father and I adored him, and how we will love him always and forever.

Our sweet Henry.

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I understand all of this and appreciate it. Life goes on. It has to. Henry has siblings who need to move forward, and Jon and I have responsibilities and jobs and a new baby who needs our full attention.

And yet…and yet…

For me, there is no sense of moving on. Instead, there is often a sense of everything and everyone moving on without me, ahead of me or around me, while I stand in place with empty arms that long to hold my son. I am his mother. I have been his mother since I was 23 years old, I don’t know how to be anything else. Henry is the first thing I think about when I open my eyes in the morning and the last thing I think about when I drift off to sleep each night.

Some days I cry a lot and other days not as much. Every so often I try to block his death out for a day – to just pretend it didn’t happen and imagine that he’s off somewhere camping or that he’s left for college, like all his friends will in the next six weeks. These temporary emotional freezes help me pull it all back together. But they don’t (and can’t) last long.

The worst days are the ones where I allow myself to go to the truly dark places – places I wasn’t able to be physically to protect my child. I imagine him lying on the floor or a couch of the house where he overdosed for the many hours it took before someone there bothered to call 911 – hours during which he was without enough oxygen and losing consciousness. Was he frightened? Did he call out for me and I didn’t come? Did he try to use his phone to call me but couldn’t manage it? Or I think about the people who beat him up pounding him in the head and stomping his chest. Did he cry? Did he beg them to stop? Did he try to fight back?

And then there are the places where I DID go with Henry but which still hurt to relive – the weeks in the hospital when he struggled to regain his speech, watching him slowly deteriorate physically and mentally, as his eyes desperately begged to be released from his pain. The day he died, when his father and I held him close as he struggled to let go. I did my best to assure him that it was okay to go, but every fiber of my being longed to scream “No, sweetheart, don’t go! Please stay. I need you and I love you. Please don’t go!”

I haven’t yet been able to go through the things he left behind, which are mostly all packed up since he had moved out of our house. There are boxes and bags to open some day, full of books and t-shirts that will smell just like Henry. I also haven’t yet been able to bring his ashes home. I don’t know when I will be able to face that. A family member is keeping them for his father and me until we feel ready.

Others will move on and remember Henry with a sense of peace and closure. As for me, his mama, the wound remains acutely fresh – my child just died. I walk around with a hole in my heart. I feel many years older and even when I’m smiling or talking about something trivial, my heart is swollen with grief that I suspect will never really go away.

This is my new normal.

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I’m just one of thousands of readers who have come to know your work through Henry’s passing. I’ve come to bear witness, to speak his name, and sit quietly with you in spirit. I shot this picture for Henry over Fourth of July weekend when I was vacationing with my family and the friends we go away with every year in Rehoboth Beach, Delaware.

This year was different, as we also gathered to spread the ashes of a dear friend who was more like a brother, whom I helped die in December after a 33-year battle with muscular dystrophy. While I’ve not walked a single step in your shoes, I have been there at the bedside, holding onto hands and calling out in love as a life passes into death. I shot this picture using a technique called light graffiti, essentially opening the shutter while drawing his name with light. (The sparkler artistry on the bottom is courtesy of my four-year-old nephew.) The picture is using light and time, which seems fitting some how.

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And although she appears to have brown eyes instead of blue, she looks pretty much exactly like big sister C as a newborn.

(And she has notably looooong fingers and toes, just like Henry)

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Remember when you see or hear or read about a “drug addict” or a “junkie,” some other parent sees his or her child.

This was my child. He was addicted to drugs, and his addiction killed him before he reached adulthood.

My beautiful, talented, kind, musical son was a drug addict and our whole family loved him very, very much. He was much more than his disease.

This is what a drug addict looks like.

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We are working on the paperwork to get legal nonprofit status set up for Henry’s Fund, and I also hope to get thank you notes out this week to all who have donated. Once we have a system in place, processing and acknowledging donations will go much more quickly.

I have had some wonderful discussions with folks who might be willing to serve on the advisory board we will be setting up to oversee the fund, and I am in the early stages of planning our first fundraising event. I am also working with the producers of an upcoming TV special about Henry’s life and death, our family’s experience with the disease of drug addiction, and what others can learn from it. The special should air in a few months – probably in the fall some time. I will share more details on this as I am able, but I can tell you that I am so grateful to the folks putting the show together. Henry’s struggles and our loss have to serve some greater purpose, and I really believe this program will raise a lot of awareness and put a human face on the label “drug addict.”

Thank you again SO MUCH to everyone who has already donated to Henry’s Fund. We are working hard to create a meaningful organization that makes every donated penny count toward saving other young addicts and helping their families.

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