Two weeks ago marked five years since my daughter June officially went on hospice, and today, February 4th will be five years since she died. While I share the story of June’s end of life privately among family, close friends, and with other parents I meet through JJMF (when they ask) I’ve been reluctant to share on a blog post or social media. In the beginning, I was afraid of any negative comments or what people might think of our family’s choices. My heart was too fragile to handle any possible criticism. As time went on, it was less about fear of criticism than my inability to relive such a dark time.

At the end of last year during a JJMF Moms Connection event, I realized through the discussion we had together that sharing June’s death story might help our community of parents. We got off the Zoom session, and I thought, Maybe it’s time, Genny. Maybe someone needs to hear what we went through.

Parents of medically complex children talk openly about medications, treatments, equipment, and services, but we rarely speak freely about death and how we help usher our child through the final stages of life. For a population with a significant number of children who will not live to adulthood, I think this should be a topic we discuss, and we should do so early on… or at least early on in the acceptance stage of our child’s condition. So, I am going to tell you the story of June’s death.

***

Though we didn’t realize it at the time, the beginning of the end was in September of 2015, about five months before June died. She was having good days and bad days before this point, but the good ones were few and far between. Thankfully we had one of June’s best days before the final trek to the end. Matt and I were sitting in the family room before bed with the TV on. June was in her brown, special tomato seat that has a wooden base elevating it about a foot above the floor. We called it her throne. George was face down on a quilted horse blanket my mom made for him doing tummy time. June looked down at him, smiling. She loved George. All of a sudden, he rolled over, and we all witnessed it. We were so surprised, even George! As he looked around wide-eyed like, what the heck just happened, I cheered. I must have scared him because he started to cry. Matt, June, and I were so proud. That night she fell asleep quickly, which was rare for her. I remember thinking, Life is so good. I hope this is the new normal. The next day June went to school. Her teacher told me she was alert and awake most of the time; It was a great day! At home, she was happy and in good spirits too.

The following morning she woke up, and I knew something was wrong. She was moaning and agitated. I could tell she was uncomfortable, so I kept her home from school. By this time, I knew not to feed June when she was like this and to give her belly some rest. I did my best to comfort her throughout the day, but she was miserable. That night I gave her medicine and hoped she would wake up feeling better. Instead, she woke up moaning all throughout the night. I had never heard her in so much pain, and June endured a lot of pain in her life.

When she woke up, I decided to try and feed June just a little bit of food. What if she’s hungry? I thought. Maybe she has hunger pains? When your child can’t talk to communicate, you have to do your best to interpret their cries and moans and body language. That was a huge mistake, though, because she threw it up immediately. I called Dr. Chismarich, June’s Palliative Care doctor, and I explained what was happening. She told me to give her an enema. I did, but nothing happened. That is very strange with enemas. About an hour later, June threw up, so I called the doctor again.

Dr. Chismarich picked up after one ring. “Did she poop?” she asked almost expectantly.

“No,” I said, “it’s really strange, though. She’s throwing up, but it’s green, and it smells horrible.”

“Alright,” she said calmly. “You need to get June to the ER as soon as you can. I will call down and let them know you are on your way.”

I put down the phone and immediately went into a logistical mode. In the past, I could just pick June up and take her to the ER. But now, I had George at home, and I was nursing. Do I take him with us, or do I call my mom or Matt’s mom to be with him? Matt was in town, and he worked from home when he wasn’t traveling, so I left George with him, called my mom, and asked her to come watch George while I took June to the hospital. I never knew how long an ER visit would take, so I grabbed my pump, told my mom that there was some milk in the freezer and formula in the cabinet should she need it. I was on my way, heartbroken that I couldn’t be in two places at once – with June and with George.

We got to the emergency room, and we were immediately brought back to a bed, they were expecting us. They examined June, felt her belly, and told me they needed to do an x-ray as they suspected she had a bowel obstruction since she was throwing up bile.

“Is that what that was?!” I said in shock. I had given June an enema to make her have a bowel movement, but it couldn’t get out, so it came out of her mouth instead. I looked at my sweet, precious baby in pain on the hospital bed and just thought, My poor baby. When is this going to stop? They took us to the x-ray room, ran some scans on her stomach, and we went back to the ER bed and waited for the doctor to review them with me.

I held June’s hand as I sat next to her, lying on the bed. I needed to pump. I was in pain; she was in pain. I thought of George and what he must be thinking as he takes a bottle for the first time. I imagined him in pain, too, just by the sudden shift in his small world.

Suddenly I heard the sharp, jarring sound of the curtain being pulled open on the rod, and it jolted me back to the room. I looked up at the doctor, waiting for him to tell me what the scans showed. “It appears there is an obstruction in her bowel,” he said solemnly. All doctors talked to me in this manner. I had gotten so used to it that I didn’t know any different until I had George. “But we can’t be certain until we operate to see. If there is one, we will need to remove it immediately.”

“How would she have gotten a blockage?” I asked. June didn’t eat anything but formula through a G-tube.

“It can happen,” he said, “but we won’t know for sure until we operate, and if there is something there, it is urgent to remove it as soon as possible.”

“Can I talk to Dr. Chismarich?” I asked, stroking June’s hand with my thumb. “She just knows June so well, and I want to get her opinion on all of this.”

“Of course,” the doctor said.

I called Dr. Chismarich and explained everything the doctor had told me so far. She thought it was reasonable to operate. It would be a quick and minor procedure. “Let’s just see if there is something in there, and we will go from there.”

“What if there isn’t a blockage?” I asked.

“Let’s just see what’s going on, and we’ll go from there.”

The doctors rolled June into surgery. I gave her a kiss and hug, and a nurse walked me to the waiting room. It was large, with chairs along the room’s periphery and rows of them lined up in between, each alternating row facing each other. As I entered, I paused and scoped out a discreet place to sit. I wasn’t in the mood for small talk with anyone. I adjusted my bags on my shoulder as I walked over to a seat in the corner in front of a large post. I basically exhaled into the chair, dropped my bags down, and started crying. I called Matt and then texted my mom to give her an update. Matt’s mom was on her way to take over for my mom. I knew I wouldn’t be home until late. Suddenly, I looked up and saw my older sister, Barbara, and I stood up and gave her a hug. And just started sobbing. I explained everything going on with June, and as I told her, it all just felt like too much. How is this even real? I thought.

Not long after, the doctor came out from surgery and approached us.

“That was quick,” I said. “Is everything okay?”

“Yes, it didn’t take long. We opened her up and did not see an obstruction, so we just closed her right back. She did great. She’s in recovery and waking up. You’ll be able to see her in a few minutes.”

“Well, if there was nothing there, why is she throwing up bile?”

“It’s called a pseudo bowel obstruction."

What the heck, I thought.

He must have read my expression because he quickly went on. “It means there is no bowel obstruction, but her brain thinks there is…lt can even appear like there is one on the scans. “

“Well, that doesn’t sound good,” I said. “It would almost be better if there was one.”

“You are right,” he said. “While it’s more immediately life-threatening to have an obstruction, it’s a quick fix, and patients recover quite well.

I was so used to hearing comments like this from health professionals. “Well, nothing is a quick fix with June,” I commented sarcastically.

“She is a complex case. Well, we are going to send her to the PICU, and Dr. Chismarich will meet you there to discuss the next steps.”

“Thanks,” I said, and he turned around and walked away.

“You okay?” Barbara asked.

“Yes,” I lied. “Thank you for coming. I just feel like her body is shutting down, and she is ready to let go.” Barbara just listened to me and reminded me how strong I was and that June was strong. We hugged. She went back to work, and I waited to be reunited with June.

***

June spent about a month in the PICU. She had a PICC line at the hospital to get nutrients through an IV, bypassing her GI system while her gut rested. The hope was she would be able to sustain feeds again. It was there that I learned one of the most important lessons of all: I can say no to doctors and no to life-sustaining measures if it means the quality of the life it is sustaining is intolerable.

When the GI doctors wanted us to take June home on a PICC line, we said no. It was too much for me to handle at home with a newborn. And you know what happened when I said no? They listened! They let June stay at the hospital for a month, and I went back and forth – I spent my days with June and my nights with George. I learned to not judge the parents of a baby or child in the hospital room alone. It’s not sad or heartbreaking as I used to think. It’s unfortunate. The parents are surviving just as the child is.

When June was able to take in food again, the GI doctor encouraged us to continue to feed her even though she was in pain. We opted to only comfort feed her, and when even that was too much, we made the painful decision to “stop her feeds,” as they say. Some people may think June just died in her sleep or some scary event like her heart stopping, but it was an active choice that we let happen. There was certainly more we could have done to keep her alive, but we decided to listen to her body and what we felt she was telling us. We chose to help her die naturally and comfortably. In my journal, I kept at the time I wrote:

I’m afraid I’m going to forget what life is like with June. Will she be a fading memory? I’m worried I won’t remember the sound of her squeals, her laugh…even her cry. I don’t want to forget the smell of her sweet breath. Today I put her hand on my cheek, closed my eyes, cried, and just felt it against me. It was so soft, gentle, sweet. I read her books as she laid in the hospital crib. I think she enjoyed it. I also told her she didn’t have to fight anymore for me. That mommy would be okay. She doesn’t have to suffer any more for me. I said it, and as I sit here and write this, I want to run back to her bed and shout, “Never mind! I need you to stay for me!” But the poor baby is in too much pain. I often say how I wish I was the one sick instead of June. I would gladly take her pain if she didn’t have to suffer, and I think letting her go — letting her die — is my way of doing that. I will carry the pain of missing her for the rest of my life if that means she no longer has to suffer.”

June died the morning of February 4, 2016, exactly two weeks after we stopped feeding her. A day earlier, she had slipped into a coma and was doing the end of life breathing. Her brain wasn’t working correctly with her other organs, but her heart was so strong. She had spent the night in our bed snuggled next to me and Matt. I thought she would die while I was asleep, and I was scared to miss her slip away. When I woke up, she was still alive. Matt brought George into me so that I could nurse him. George latched on as I held his head into the crease of my right arm, and June lay beside me with my left arm around her. Suddenly there was a deafening silence, and I turned to look, and she was gone.

In the New York Times documentary Dying In Your Mother’s Arms, we meet Dr. Nadia Tremonti, a pediatric palliative care physician. The piece follows her as she works with children and families in these final stages of a child’s life. She beautifully states at the end,

“As a doctor who specializes in death and dying, I get asked often, how would you want to die? If I’m really magical about it, I would say that I want to live till I’m 100 with everybody I love healthy. And then I’d like to magically turn into a baby and die in my mom’s arms. Because I think there’s not a place in the world of more peace and unconditional love.”

I know this is a difficult story to read. I lived it, wrote it, and every time I reread it, I cry. My goal in sharing this was to open the conversation a bit more, so it doesn’t feel taboo. I used to be afraid to ask doctors about June dying because I didn’t want them to think I wanted her to die. I had so many questions, but I was ashamed to ask. Maybe you feel a little bit of that too? I hope you feel less alone, more empowered to listen to your child, and steadfast in your family’s values, even if that means saying no to a doctor who wants to do more. My biggest hope of all, however, is that you let go of any guilt you might be carrying. Letting your child die when she is ready is not giving up. In fact, it’s the bravest thing of all.