In a Moment
The Hilals, a Walnut Creek family, in Paris on vacation, a few days before their oldest son fell desperately ill. Here is the mother’s story as adapted from blog posts on Caring Bridge.
On July 30, 2013, while happily eating a second scoop of Berthillon’s delicious chocolate ice cream on the Île Saint-Louis, my 11-year-old son, Holden, said his head, and then his eye, hurt. Then, he began vomiting. We thought he was dehydrated or reacting to the cold ice cream on an empty stomach. But within five minutes, he couldn’t speak and collapsed, leaning semiconscious against my husband’s chest.
Sameer held him, and we ran to a nearby emergency room. We were still operating on the assumption that Holden might only be severely dehydrated. But when doctors tried to bring him back to consciousness, they realized that there was a much bigger problem.
Things began to move. Fast. An ambulance was called to transfer Holden to Necker, the children’s hospital in Paris. Within three hours of Holden licking that ice cream, Sameer and I sat dumbstruck as a French neurosurgeon said, “Your son has a massive hematoma, and I need to operate within the hour or he will die.”
July 31, 2013
The surgery took five hours. The operation to stop Holden’s brain bleed was successful. Holden is alive, and has been put into a coma so his body and brain can rest.
We have no idea whether he will ever wake up. If he does wake up, will he be the boy we knew—our smiling, adventurous, fearless boy?
Sameer and I sit together, reeling in shock, on vinyl chairs in a hospital 5,500 miles from home. We hold each other and weep. We feel helpless. Powerless. Terrified. Angry. I have the most splitting headache. My eyes—my entire body—ache from crying. I feel sick.
We sit at Holden’s bedside for eight hours—every allowable minute—then leave heartbroken. The nurse tells us that earlier that morning when we weren’t there, she had to aspirate Holden and that he coughed a little on his own. I weep inside then; later, I weep openly at the apartment. I would give anything to hear him make a sound, any sound, even a cough.
Holden is stable, and we’ve passed the critical 48-hour mark with no new bleeding.
Sameer and I sit at Holden’s bedside all day long. We read to him; we sing his favorite songs; we talk reassuringly to him and ask questions. He lies there, unmoving, eyes closed, his body shrouded in blankets, head swathed in bandages. There are so many tubes. We ache to see some sign of life.
We witnessed Holden briefly open his eyes several times. We also saw his left arm and leg move. We are thrilled!
Holden still has no movement on his right side. What? Why? The questions we can’t answer are eating us alive. Sameer and I are not naturally patient people. We’re planners, doers. Waiting is nothing less than torture. Knowing there are no answers—that only time will tell—simply makes things worse.
Later, when Sameer and I are sitting by Holden’s side, his eyes flutter open. We leap out of our seats and both begin talking to him excitedly. Holden’s blood pressure and heart rate suddenly spike. Alarms go off. Lights on medical equipment flash wildly. A nurse rushes in, looks at his vitals, looks at us, and tells us we are overstimulating him. Naturally.
The good: So much good today! Holden is off the ventilator and much more alert. He points to his younger sister and brother, Arden and Hudson, in a photograph. He can smile when I ask him to.
The bad: We still don’t know a lot because he can’t talk yet, and we don’t have the pathology report. However, we are feeling pretty elated.
Holden is pretty subdued, and we are greedy for more of him to emerge. The doctors think he is stable enough for an MRI to explore the lesion remaining on his brain.
He’s not in any pain, at least as far as he can communicate. It’s hard to be patient and positive when we are tired and depressed. I think we’ve perfected how to make a Paris vacation not glamorous.
The good: Holden said five words to us today. His right hand and arm continue to show signs of improvement.
The extra good: Within hours of our calling from the ER, Sameer’s cousin and wife arrived from Geneva, and two dear friends from the States have flown here to be with us. The family from whom we’re renting an apartment has graciously given us an open-ended invitation to stay there. Hudson’s onetime French teacher has been taking Arden and Hudson on outings around Paris. Back home, friends in the medical field go out of their way to connect with us, and research care alternatives for us for when we come home—whenever that will be.
The bad: Holden said five words to us today. Can anyone imagine our chatty Holden only being able to say five words?!
Great news: The lesion is a benign tumor! Still, it needs to come out—which means Holden will need further surgery once we’re back home.
Holden said “Mom” and “Dad”! He was able to raise his left hand when we asked him to wave. We’re trying not to look too far down the road, because it’s overwhelming.
Sameer said, “Say something. Come on, Holden, say something.” I looked at Holden and said, “Don’t you dare say the word ‘something.’ ” He smiled, his first real smile. He then tried to grab my nose, but his hand didn’t quite make it to my face. He tried again and actually said, “I didn’t get it the first time.” Holy moly! A complete sentence.
The external drain has been removed from Holden’s brain, and he’s been moved into a lesser ICU room, where Sameer or I will now be able to spend the night with him. He was able to speak a little today to tell us he was in pain. Not the words we were eager to hear, but at least he could communicate with us.
The doctor says Holden will probably be safe to fly home next week. This welcome news is tempered by the fact that Holden’s in a lot of pain, between aching muscles he hasn’t used in two weeks and his painfully swollen head.
The really hard: Finding the courage to tell Holden he has to have another operation to remove the rest of the tumor when he gets home.
Gratitude: Home is in sight. Holden is talking and trying to walk. We’re now allowed 24-hour access to our boy. We take full advantage. Sameer and I are together with him all day. Then, I go back to the apartment at night to see our other kids and my parents, to deal with logistics outside the “bubble” that has become our norm. Sameer attempts to sleep on the chair next to Holden, eager for connection, desperate for rest.
The good: After a month in Paris, it’s reassuring to know that we will all be on a plane together in fewer than 48 hours. Holden continues to surprise
us. Every parent thinks her kid is great; however, we were amazed at Holden’s bravery and perseverance yesterday as he walked, assisted, around his room twice, and used both hands to play a little catch with Dad.
The hard: Not knowing what will happen when we get to Children’s Hospital Oakland. Will the next surgery be in two weeks or two months?
The ironic: In a weird way, Sameer and I are going to miss our ride from our apartment to the hospital, arguably the nicest Metro ride in Paris because it’s above ground and whizzes across the Seine and past the Eiffel Tower. It has become so familiar and, in the face of so much uncertainty, has been a beautiful constant in our lives.
We’ve arrived home safely, and have met with the neurosurgeon and the head of rehab. The next surgery will likely be early next week.
The good: Holden’s friends made him the sweetest “welcome home” sign, which now adorns his hospital room. He began rehab yesterday, occupational therapy, speech therapy; during physical therapy, he stood on his own for 10 seconds!
The hard: A 10-hour surgery is scheduled for Monday. I thought I’d pass out when the surgeon told us how long it would take.
Still so many surreal moments in our day. Pushing our lively, active, outgoing boy along in a wheelchair. Are we really doing this? Looking at the MRI scan with the doctor and seeing the tumor on the screen. Really? That’s in our beautiful boy’s head?
Sameer spends every night in Holden’s hospital room, and I’m with him during the day. I like to lie down next to Holden when he takes his naps and cuddle with him until he falls asleep. I lay one arm across him, and the other cradles his head. I keep wishing that I could transport us out of the hospital to another place where this isn’t really happening, where we are just lying somewhere side by side, napping.
The hard: The countdown to surgery. Walking by Holden’s empty bedroom at home. Trying to cope with the rest of life.
Holden had an excellent day. He had several visitors and enjoyed them all. When his best friend, James, came to visit, Holden laughed more than he has since being hospitalized. I’m so grateful to this boy for treating Holden just like Holden. And for the stunningly thoughtful gifts and cards that so many people have sent our way. It’s so helpful knowing that we are not alone in our vigil, especially for the next 72 hours.
Holden’s surgery was just rescheduled for tomorrow. Could this be any more stressful?
I’m acutely aware of how abnormal our life has become. On the eve of the always exciting “first day of school,” I find myself having to get two backpacks ready, two lunches, two uniforms. It should be three. It’s supposed to be three. I cannot drive Hudson and Arden to their first day of school tomorrow because I need to send Holden off to the operating room at the same time. Arden wept bitterly the tears I could not afford to.
Surgery is done earlier than expected, and Holden will be heading to the ICU for the next three to five days. The next 48 hours are critical to watch for infection and swelling. The doctor feels confident that he has removed the entire tumor, and we’re hugely relieved.
Holden’s postop recovery is going extremely well. He had his external ventricular drain removed this afternoon, and his MRI yesterday showed no remaining tumor. Yay!
With the help of many friends and family, we had an almost “normal” day. Long overdue and much needed, today was about TLC for Hudson and Arden. Sameer and I took them to Waterworld and had a wonderful time. I so enjoyed being with them, really being with them. So often I am guilty of being physically present with my kids but not wholly present. I find myself checking e-mails, making lists, planning the next day. But not today. After swimming, we took them to look at kittens. We have promised them for two years that we would get two kittens, and now the time seems right.
Holden’s physical recovery continues rapidly—so much so, that he is getting a family pass on Saturday and will be able to come home for the night. Then... drumroll, please... Holden’s projected release date from the hospital is next Wednesday.
We are all home in Walnut Creek together. I have honestly never thought about the simple beauty of having all my children safely asleep in their beds. Before the 30th of July, I had put my kids to bed countless times, turned on the TV, and fired up my laptop. Tonight is different. I am sitting here in my family room and am truly savoring the joy of it: their sweet, slightly sweaty faces, their arms flung above their heads or curled at their sides. They are so beautiful in their peaceful slumber. We are so lucky to be guarding them and helping them grow.
I’m really glad we had this trial run before Holden is discharged. It was harder than I anticipated, with Hudson not understanding that although Holden looks and sounds like himself, he’s really tired and weak, and not up to their usual wrestling and roughhousing. Holden didn’t really do much at home; a few visitors and watching a little TV wiped him out by the end of the day. Paleness and headaches ensued at the end of each evening.
The good: Having everyone together in our home, of course. The addition of a little boy kitten and a little girl kitten. Everyone having a good night’s sleep. Last night was Sameer’s first night in his own bed in nearly six weeks.
Our boy is home! I am elated, nervous, hopeful, worried, grateful—and angry. As I drove through the Caldecott Tunnel this morning to pick up Holden, I started to cry. I haven’t cried a whole lot in the past two weeks and was surprised to find myself doing so. And then I knew why. My old life and my new life were about to merge.
I want my old life back, and it’s not coming back, not ever, not exactly. Who knows if Holden will make a full recovery? When something happens that you never even feared in your wildest dreams because you couldn’t even think up its awfulness, well, it’s hard to not be changed by that.
I am worried about how the two worlds will mesh. Holden was, by far, the healthiest-looking kid on his floor at the hospital. How will he look to me compared to his real peers? Holden walking on his own to and from rehab was a huge victory. Holden being too tired to get out of the car tonight to get some celebratory ice cream was depressing.
People have kindly reminded me how far we’ve come. It’s true; it’s amazing. But just as amazing is how far my baby has fallen.
Big step tonight: We took Holden to a birthday party for a family friend. There were nine kids. We were a little nervous. Would he be overwhelmed? Would he be able to tell us if he was too tired? You can predict what happened. Holden did great, and my other two “healthy” kids were the ones who quickly fell apart upon arrival. I remind myself of what this ordeal has done to them.
As I tuck my sweetie into bed, I say, “Did you have a good time tonight?” Huge grin on his face, he answers, “Yes, thank you for taking me.”
“Did you have fun playing Monopoly?” I ask. He looks at me quizzically, and I realize he does not remember. I try another tactic. Do you remember the kids we just saw? And he promptly rattles off the kids’ names. And do you remember the type of birthday cake? And he does—ice-cream cake—and he remembers whose birthday it was.
So here’s what Holden taught me tonight: It doesn’t matter what you do. It matters who you do it with and what kind of cake you have while you’re doing it!
We went to school together for a brief visit, and Holden saw many of his friends and classmates. Their sweetness, genuine concern, and protectiveness were so beautiful to witness. We had a home visit from the neurosurgeon. (Who knew that still happened?)
The high of my week: As I have enjoyed the luxury of almost daily lunches and nightly dinners being delivered to me by family and friends these past few weeks, I am feeling so loved, that my family is so loved. Whether the actual words are exchanged, love, concern, and affection are clear. It makes me wish every person could have this experience—not, of course, under these circumstances, but the knowledge that each of us matters a lot, to a lot of people. That is my wish for each and every one of you. Tell all the people you love that they matter right now; you don’t need to wait for a crisis.
Overeager Mom took Holden to library time at school and speech therapy later the same day. Result? Holden threw up dinner. After consulting with doctors and various checks for seizures, etc., it turned out to be exhaustion. Lesson learned: Slow down.
Long walks with Holden. I’m finally getting to move after six weeks of sitting in a hospital room. Beautiful fall days, crisp air, and mellow sunshine. Hanging out with Holden while I push him in a wheelchair. Watching his upturned face soaking up the sunshine, then tilting his head back to find my eyes and give me a big grin.
And yet I am surprised sometimes by how fragile I still feel. Someone is rude while driving or cuts in front of me in line at a store. I feel like I want to cry. I want to wear a sign on my shirt: “Handle With Care.” I’ve come to realize that there are probably lots of stories like ours, people coping with enormous changes, loss, uncertainty, stress. I know I’m going to be a little kinder and a little more compassionate, now. You just never know the backstories.
High/low: Breakfast-time sibling fights have commenced! Overjoyed that Holden isn’t completely passive all the time. As annoying as the bickering is, it’s still a sweet sound of normalcy to me.
We’re really working on the art of reframing. The other day, Arden said, “Paris sure is unlucky for us.” In addition to what happened to Holden this summer, two years ago, our cats ran away while we were in Paris. I said to her, “What do you mean? Paris is the city that saved your brother’s life.” I think the only way we’ve survived so many heartbreaking moments is to reframe them.
Heartbreak: My son can’t make it through the corn maze; he’s too tired. He’s pale, he’s weak, and doesn’t even seem upset that he can’t do it.
Reframe: We’re at the pumpkin patch with all of our kids. Holden is walking on his own, smiling, happy to be there. The kids are arguing over which pumpkin to get. They don’t automatically pick the one Holden wants.
And so it has gone and will continue to go. Every day we face a disappointment, a surprise, a challenge. Every day we are blessed with the opportunity to reframe these situations and find the good.
My highlight this week was one simple five-minute moment Tuesday morning.
Oddly, I had all three of my kids lined up in my bathroom asking me to do their hair. There they were, all lined up in birth order, facing the mirror, their backs to me. I took a mental picture. This was beautiful.
I was so grateful that our recent journey has made me stop, look, and feel the joy in the little moments that make up a “normal” day.
Milestone: Last week, Holden attended three classes back-to-back and even managed a playdate afterward! He was very proud of his accomplishment, even though, two days later, he couldn’t quite remember which classes he had attended.
We continue to ride the seesaw of this experience. Because Holden’s physical appearance and speech are practically back to normal, it is so easy for me to forget the trauma he suffered. My hope for his academic prowess immediately returning is frequently thwarted. His abrupt fatigue at cognitive tasks is frustrating and hard for me to accept.
But beyond those brief encounters with disappointment, I have been feeling the “burden” of gratitude. With so much to feel thankful for, how can I make sure that I do something worthy because of all that we’ve been given, for the bullet we dodged, for the “could’ve beens” that aren’t, for the many gifts of time and love that we’ve received? There is no way to repay friends, doctors, supporters for the gift of the life of your child. Hence, we will gladly carry this immense gratitude as a kind of obligation to do the best we can to make a difference in someone else’s life.
Holden has taken this experience with a stunning degree of grace. At times, when I am worried about some limitation of his, he is calm and grounded. He reminds me that his brain is still healing. He feels empowered and now calls himself a survivor.
Holden is managing about three hours per day of school. His neuropsych results were excellent, showing that his core intellect is intact. While his processing speed and short-term memory are impaired, there is a great chance these will return to normal levels within a year. For the rest of his life, Holden will remain at higher risk for developing epilepsy, but we’re not going to worry about that unless we have to.
A recent pathology report indicated that Holden’s tumor was slow growing, at a rate of 5 percent. We were told anything below 8 percent is what you hope for because if a tumor ever recurred, the doctors could catch it early on regularly scheduled scans.
And Holden’s three-month postop MRI showed no signs of tumor recurrence! I don’t think the enormity of my relief has hit me yet. I can’t believe we can take a little breather.
April 15, 2014
Our once fearless boy made a brief appearance recently as he ran up the face of a huge rock in Yosemite, and I can more fully appreciate his progress. From almost dying, to coma, to awake and not speaking, to awake but not moving his right side, to speaking, to sitting up in a chair, to running up the face of a rock—what a journey it has been.
As our life returns to a more recognizable state of its former self, I do not want to lose sight of any of the life lessons our experience with Holden has revealed. Here are a few.
Listen. Savor the chatter, the arguments, the laughter, and yes, even the whining. There is nothing like the absence of these sounds to make you acutely aware how important and beautiful they really are.
Look. Look at your kids, your spouse, your parents. Give them your whole attention. Your to do list, your text, your phone call can wait. What if that bright shining face, that tear-stained face, or that animated story-telling face was no more?
Don’t judge: Don’t do it. You don’t know what another person’s story is, what that person’s struggles are. Be kind.
Help. Don’t be afraid to ask for it. Look for opportunities to give it. We have not made it through this journey on our own. We made it through with the strength of all our family and friends.
Forgive. Forgive yourself, your kid, your spouse, your boss. Holding on to anger, frustration, disappointment is a waste of energy. Move your energy forward to something positive.
Feel joy and gratitude. Look for it; cultivate it; make space for it in your day or week. Take a moment to think about something for which you are grateful. Do something that will bring joy to someone else.
Let it go. You can be the best mom, boss, or student, and life will still unfold for you the way it will. Let go of expectations that are burdensome and fears that are prohibitive of your enjoyment of life, just as it is at this moment.
This article started as a series of blog posts on Caring Bridge, a website for people experiencing a crisis who would like to connect with family and friends. The author ended her posts with the following:
“To the followers of Holden’s Caring Bridge updates, thank you for your prayers, your thoughts, your e-mails, your meals, your carpooling, your cards, your flowers, and your gifts, posters, balloons, patience, concern, advice, support, and love. You are a most amazing group of people. We will forever be connected to you through the life of our eldest son. Every day, when I look at Holden, I see you all, feel you all, remember you all. You are a part of him, and I hope he will always remain a part of you. To me, he is a beautiful symbol of love, hope, and the goodness of humanity. Thank you for being part of our journey.”