We want to have everyone here when Henry dies.
We will have Jack and Joe front and center. Laurie and I took Jack to dinner tonight. Jack drew a picture of the family, everyone has on kippot because of Hanukah. Henry has tubes and wires and is happy because he is out of the hospital. I explained to Jack that Henry will indeed be happy to be out of the hospital and it will happen this week. I told him that Henry fought very hard not to be sick, but in the end the sickness was stronger. I told him that Henry was coming home but he was not going to live any longer. I told him that we are going to have a funeral and we need Jack to help bury Henry just like he buried Grandma. I told him that Henry loves Jack and Henry knows that Jack loves Henry. He sat in Laurie’s lap with his arms around her and wept. I told him that he didn’t need to be strong. Laurie explained that she was crying because she is so sad and it is just fine for Jack to cry as much as he needs.
I dropped Laurie off at the hospital and went to take a shower at the Ronald McDonald house. The water would only get lukewarm.
Laurie is writing a eulogy. She is writing a book about our life trying to save Henry’s life. I started this diary to help her understand the chronology of this visit, which was supposed to be a short one, and what I have been feeling. I didn’t know this would become the final chapter. As hard as it might seem to believe, I really thought Henry would be President of the United States one day. I thought he had the wisdom and disposition for the job (like his mother, but I don’t think she needs the headache). I am not comfortable writing about him in the past tense. It’ll take some getting used to. I don’t think I’ll be able to say anything at the funeral. I want to make a CD of Henry’s favorite music and have it duplicated and hand it out at the ceremony. Then people can take it home and always think about this special guy every time they listen to the music. I know I’ll be thinking of him every waking moment and when I sleep. I just want the good memories back. I know we rode the roller coaster at the Mall of America last month. I just can’t get the picture in my head.
We’ve been saying good-bye for a while now, but it isn’t very easy. The fact that his body is here but everything else is checked out is a good thing. It gets you used to him not being around. Jack has just come over and is going to have a sleepover at the hospital with me and Laurie. Tomorrow he has a class field trip to a nature center. He loves that stuff. He’ll be okay. Joe is probably too young to know anything is wrong. Maybe he does and that is why he won’t stop smiling and walking and giving us joy.
How incredibly lucky I’ve been to not only know Henry, but to be loved by him and to be his constant companion for so long. After two years of hanging with Henry, I guess it is time for me to go home, love Laurie, Jack and Joe, find a job, and get on with life. So long, my superhero.
Wednesday, December 11, 2002, at 8:34 a.m.
We chose what day and time Henry was born, and now we’ll do the same with his death. Everyone is in. My friend, (Rabbi) David Abramson, cannot be back from Israel in time to officiate at the funeral. The path is clear.
Laurie and I have been able to grab a few minutes together here and there, and we’ve had great conversations about Henry. Thank God for Laurie’s amazing memory. She is helping me because I am still a blank. She reminded me how when Henry learned her cell phone number he became a big abuser. He’d call it every chance he got and left messages like, “Hi mom, It’s Henry. I am just calling you to tell you how happy I am, how much I love you and how beautiful you are. See ya.” He’d do this over and over.
I’m glad my mom isn’t alive for this. But I am sad that my dad is physically alone. We are here for him, as is my sister and his friends, but how hard it must be not to have someone to lay next to in bed and talk about how much you loved your grandson and hear that everything will be all right. Henry loves all of his grandparents, aunts, uncles, great aunts, great uncles and friends so much.
December 11 at 11:11 a.m.
I went with my dad and Jack to get Jack some big boy clothes for the funeral. I also bought Henry the biggest Swiss Army knife they make. He always wanted one, but Laurie knew he was still too young. He doesn’t have much of a palm, but I put his fingers around it and he is holding it now. Also, it is pretty ironic that we took Jack to get something to wear when he couldn’t care less. Henry was the real clotheshorse in the family. He had style.
The clerk at the store asked if we were out having a shopping day. I wish I had the wherewithal to say, “No, we’re removing life support from my son today.”
We’re working on funeral and burial arrangements now. I ran into the manager of the Ronald McDonald house earlier and I found that I had to actually say, “My son is going to die today and we are going to be out of here by tomorrow morning.”
December 11 at 12:27 p.m.
I am very scared that we only have a few hours left with Henry. Laurie and I both had the same thought. What do we do tonight after he dies? We aren’t home. Maybe we’ll drive around the lakes and as Laurie suggested eat some of Henry’s favorite foods, skittles, garlic bread, chips, chocolate croissants, and other nutritionally-deficient items.
December 11 at 1:26 p.m.
Dr. Wagner was just in and we all sat around reminiscing about Henry. The one thing that struck me is that Henry always said, “Let’s just get it over with,” or “Let’s do this already,” when he was going to have a procedure, or had to get blood drawn or had to go to clinic. He was impatient for the not-so-fun stuff to be over so he could get back to the good things in life. I know that Henry is glad that we are following his instructions and “just getting this over with.”
They have him on Pentobarbital which keeps him very relaxed and in a dreamlike state. We’ll remove a lot of the tubes and the ventilator at 6 pm. We will get everything out of his mouth so we can kiss him. Hopefully we’ll be able to cradle him in our arms. We’ll play his favorite songs (my brother-in-law brought some of Henry’s mixed CD’s from home) and probably tell some good Henry stories. A rabbi will be with us and we’ll say the Vidui prayer and the Shema. I think I’ll go swipe the menorah from the lobby of the hospital and we can break the rules and light the candles. Henry’s last words to Laurie were, “Mom, this is a terrible last day of Hanukah.”
Maybe we can make it better.
On December 11 at 6:40 p.m. CST, Allen wrote the final posting in the blog: Henry Strongin Goldberg died. I removed his breathing tube and his heart stopped beating while Laurie held him in her arms on a rocking chair in his room.
Five-year-old Jack, one-year-old Joe, Allen’s dad and my parents, all of our siblings, my aunt, and Dr. Wagner stood by as Allen and I, with the guidance of doctors, removed Henry’s chest tube, arterial line, feeding tube, breathing tube, IVs, and chest leads. The official cause of death was aspergillus, an untreatable fungal infection in Henry’s lung.
But it was really the failure of preimplantation genetic diagnosis that killed my son.
I removed the picture of Henry in his Batman costume that we had posted on his hospital room doors for more than two and a half years and taped it to the shroud that covered his defeated body so the people at the morgue would know who they were dealing with. Then Henry disappeared forever.
The next night, millions learned of Henry’s death directly from Ted Koppel as Nightline rebroadcast its show on Henry’s life.
From there, things unfolded much as I had imagined they would. My brother took care of all the funeral arrangements, including transporting Henry’s body from Minneapolis to Washington. My sister bought me clothes to wear to Henry’s funeral. I put down on paper the eulogy I had been writing and rewriting in my head for years. With significant help from my friend Erica Antonelli, Allen created a CD of Henry’s favorite songs, including “Pierre,” “Homemade Lemonade,” “Henry You’re Our Superhero,” and a selection of Dan Zanes songs, to give to everyone who came to our house to sit shiva, a Jewish ritual that involves visiting the home of the family in mourning each evening for one week foll
owing a funeral.
Like a lot of little girls, Bella kept a diary to record her thoughts, feelings, and highlights of her day. When I was eight, my diary featured romantic developments like “Jessica says that Larry likes me. I hope she’s right” sports highlights like “Christine and I won first place in the three-legged race in Field Day today” and embarrassing details like “Today we got our soccer trophies. Mine had boobs and all the boys laughed at me. Maybe I should join a girl’s team.” Unlike mine, Bella’s diary betrayed a life painful beyond her years. On December 11, 2002, Bella wrote:
Dear Diary,
This evening they are going to unplug all the machines monitoring Henry. Friday will be his funeral. There is no school today so it is like everybody is taking a day off for Henry. I wish I could find the rings he gave me to wear. This is a hard time for everyone. I look at the pictures on the fridge of Henry and I. I picture Henry and I playing checkers and other games and doing stuff together. I remember the last time he came over and he read to Lauren and me. I just wish Henry could get better.
Bella
The day of Henry’s funeral was freezing cold and pouring rain, which was perfect. I felt confused and old and empty, kind of like I did in the nightmares I had over and over again. But worse. Everything was moving in slow motion. We sat in the front row of the sanctuary, which was filled with a thousand people ranging from family and friends to complete strangers. I sat between Allen and Jack, who busily played his Game Boy Advance, the one Henry bought him with his tooth-fairy money. I didn’t even notice that Jack, Lisa, and Molly Nash were there, which was extraordinary, especially in light of the fact that Molly had just had surgery and was in a halo brace. I forgot how to breathe, and my hands and legs started to tingle and then go numb, along with the rest of me, so Allen gave me a little pill that allowed me to survive.
Andrew and Abby read my eulogy.
On October 25, 1995, Henry made me a mom and a better person. Before he could even smile or talk, Henry taught me what was important and what just didn’t matter at all; and he taught me to savor each moment; to love; to laugh; and to dwell in possibility.
And together as a family we have done just that, packing more smile- and laugh-producing times together in seven years than many do in a lifetime. We have lived and loved as though we could one day lose Henry while simultaneously pushing love and science to their limit to ensure that we would have him in our lives forever. Henry has driven a tractor, fallen in love, danced with ten women at one time, and laughed until he fell over. Just two days ago, Henry finally got the biggest, baddest Swiss Army knife, which he held on to until the very end. We lived every day with Henry to its fullest. We have had ice cream for dinner, transitioned from the hospital to running a lemonade stand in a matter of minutes, gone to Cactus Cantina seven nights a week, acquired every single Pokémon figure made. At last count we had 188. He met President Clinton, Cal Ripken, Batman, the entire Minnesota Twins baseball team, and more significantly, they got to meet him. We did all those things because at that moment in time we could and because, though we always hoped things would get better, we knew enough to go when the going was good. Just in case.
As I’m sure all of you know, Henry just made everything better. He was wise well beyond his years, and he was so much fun. It’s almost as if all the good things in life were created with Henry in mind. No one had greater appreciation for Disney World, Funland, Sullivan’s, or any of the other fun things in life than Henry. He was a great lover of music, and could sing “Brick House” and dance with the best of them. I will cherish my memories of Allen and Henry dancing together in our home….
My dad used to tell me that a day without me was a day without sunshine. Now I know what he was talking about. Sweetie, you are everything enjoyable in life. You are a lemonade stand on a hot summer day. You are the first piece in a box of Godiva chocolate; kite flying on the beach; the final encore at a Springsteen show; S’mores at a campfire; a piñata at a birthday party; fireworks on the fourth of July; a ride on a Ferris wheel; the glow of candlelight during a thunderstorm; finding a sand dollar on the beach; penny candy; class outside; the last ski run of the day; meeting your child for the first time. The loss of you drenches my heart in sorrow.
I’m not sure how Cactus Cantina or Max’s Ice Cream will survive without you, and I sure wish that Daddy, Jack, Joe, and I didn’t have to. I miss you so, so much already. Our job now is to ensure that everything is better because of you. So, like you, we will draw our swords, but don’t expect the same resiliency. You set the bar high. Give us a while and we will make you proud, my son.
My eulogy was followed by others by Henry’s rabbis, doctors, elementary school principal, and other family members.
After the service, we filed into a black limousine, but this time Henry wasn’t there and we weren’t going to Disney World. Thankfully Jack and our niece Hannah were there, otherwise the silence would have been deafening. The thud of the dirt that hundreds of people threw on Henry’s little coffin threatened to make me understand that I would never see my son again. On the way from Henry’s grave back to the limousine, I walked out of my shoes and the cold mud froze my bare feet, reminding me that I was alive, which was agonizing. When we got home, Jack made a spaceship out of a big, empty cardboard box and sat alone in it in our basement while hundreds of family, friends, and strangers came to provide comfort and company. For nights or weeks (I can’t remember), members of our community lovingly dropped off food for us. Lacking appetites, it went uneaten, so my friend and neighbor Debbie knew to come by late in the day to pick up the food and donate it to needy people whose grief hadn’t robbed them of their desire for sustenance. To this day, lasagna represents the food of death, and I don’t think I will ever eat it again.
The day of Henry’s funeral, Bella added another entry:
Dear Diary,
When the funeral started, they sang a song about Henry. Mom started crying. Then they shared a story about Henry, this is how they said it: Hen loved his Sunflower teacher Liane and her daughter Isabella. Last summer, Henry was invited to Bella’s ballet recital. He got all dressed up and excited and was ready for two hours before he had to go. Finally, Laurie said it was time to go. Henry said, “We first have to buy her flowers.” That story made me cry. He was so sweet to me. They told many stories like that too. I my boyfriend Henry. I should probably forget about those boys from school, I’m taken.
Bella
One evening the week after Henry died, my brother gave me a copy of the eulogy he had written, but not shared, at Henry’s funeral.
Laurie and Allen both, to my mind and in the words of my wife, Tracey, must be the luckiest unlucky people. They’re the ones who walk into a brightly lit room and make the lights flicker. They bring energy and power into the room. They have the magic “x” factor that starts the party, that gathers the proverbial moths to the flame, the magnets into the gray of iron filings. They are magnetic. Others need to be with them, not just to touch them, but also—especially—to be touched by them. It’s the opposite of the Groucho Marx adage: If they’ll let you join the club, you’ll join it if they’ll have you, period. No questions asked. Just look at the last seven years, the last seven days. Look at the crowds, the depth of love for them and their extended family. This outpouring of love and grief and support is no accident or aberration. It’s no surprise, either, to those of us lucky enough to have been touched by them.
When Henry was born, I, like others, suffered multiple personal losses. My boundless, bottomless grief for Henry, for Laurie and Allen, for my parents, for my family, and later for Jack, and then Joe, and for my own children, remains, even now, perhaps especially now, immeasurable.
Most difficult to admit, however, has been my fear of an intensely personal loss. My fear that with the gain of Henry, I lost my sister. How, I wondered, could Laurie, even Laurie!, weather this storm? Who could? Could I? During the months of Tracey’s pregnancy with Emma, during those few bright mo
nths when the world remained full of possibility and wonder, before the awful words “Fanconi anemia” entered our lexicon and wracked our world, I often thought, in my darkest moments of private fear, that if I was to become the father of a sick child, I might—just might—be able to survive if only Laurie were to have a sick child too. Surely, if anyone could withstand such a travesty of justice, if anyone could put the lie to the notion that life must be fair, it would be Laurie. Together, we’d both make possible the impossible.
Laurie always has been my hero, long before she was called to act in a truly heroic way, and thus long before she truly was a hero. I mistook Laurie’s early ease and success for heroism. What does it mean to be a hero in the absence of adversity? Not much, after all. It’s a label, a red badge of courage, that must be hard-won through adversity, through worthy trials and tribulations. Any right-minded hero would trade the label, however high the honor, for the opportunity, the chance, to erase the need that gave rise to the honor. But that same hero, knowing that such chances are not our lot, would walk the same difficult path, and make the same personal sacrifices. That’s what it means to be a hero. That’s what it means to be Laurie. How I wish for a return to the days when my heroes were false, for a world in which my sister would have had no cause to demonstrate, time and again, her true heroism. The world, it seems, needs its heroes. Fortunately, I suppose, we have Laurie.
Saving Henry Page 22