BY GENNY JESSEE

My nearly four-year- old daughter, June, died in February of this year, and I am doing okay. In some ways, I am better now than I was when she was alive. It pains me to admit that, but it is true, and it in no way diminishes my love for her. You see, June died four months ago, but I’ve been grieving June for four years.

I’ve heard there is nothing worse for a parent than to lose a child. I would counter that there is nothing worse than to watch your child suffer while you are unable to alleviate the pain. From the day after June’s birth, we lived in a constant state of worry and unknowns about her health and future. It was one tragic blow after another.

The first, while seemingly minor in retrospect, was when June failed the newborn hearing screening. It was a sharp, powerful punch in the gut that nearly knocked me down and out. I begged God to restore her hearing, to have the test be wrong. I promised to go to church every Sunday, to give back to my community and to never sin again.

When I finally got on my feet again and accepted June’s hearing loss as a challenge we would overcome, she developed infantile spasms, a rare and catastrophic form of epilepsy that doctors were unable to control. They told us her prognosis was poor. Around her first birthday, we discovered she had kidney problems. Shortly after she turned two, we learned she wasn’t eating enough to thrive and needed a feeding tube. At three, her bowel would intermittently shut down causing her extreme stomach pains. It seemed like the bad news would never end. We were getting hit so frequently that I became numb to the pain. I stopped pleading to God to make June normal, and I began praying that he would make it stop, even if that meant letting June go. If it had to be one or the other, I could take the pain of missing her every minute for the rest of my life. This sweet child should not have to bear any more suffering. Ultimately June’s kidneys failed, and she could no longer take in fluids without them pooling in her lungs. That’s when my husband and I decided to listen to June and what her body was telling us – she was ready to die.

This realization didn’t come to us overnight. It was a constantly evolving conversation we had since we realized June’s symptoms were untreatable. Unlike some life-limiting illnesses, we didn’t know what was causing June’s health problems, so we weren’t sure how her disorder would play out. I knew I would likely outlive her, but how could I tell when she was dying? Since June couldn’t talk, I was scared we wouldn’t know if the pain was getting to be too much for her. The last thing we wanted was to keep her alive, and suffering, just because we were scared to live without her.

We reluctantly adopted a wait-and- see approach and let June be our guide.  June’s care team assured me that we would know when it was time. I just hoped I would recognize it. I am grateful that June had an excellent pediatric palliative care physician and hospice team in place since she was a year old.  It can sound scary and intimidating, but pediatric palliative care is an incredible resource to families when most doctors do not know how to help. I could talk openly about my concerns regarding June’s comfort and her death. But, like most things along this messy journey, it wasn’t perfect. I’ve learned that this is an entirely human experience, and, in that, there are many imperfect interactions. I am not flawless, and I know doctors aren’t either. During June’s last hospital stay, her palliative care doctor was out, so her nurse practitioner and the gastroenterologist oversaw our stay. I was very emotional because I realized June was dying, and we were insistent that they only feed her as tolerated, and not any more than that. I felt they were dismissive of our concerns and choices for June’s care. They accused me of exaggerating June’s pain, told me there was more we could do to keep June alive, and even questioned my mental health. I was shocked we were receiving this amount of pushback when June was so gravely ill.

I was so angry after that stay, but it did open my eyes to how invaluable our palliative care doctor was. Had she been there, I likely wouldn’t have known of these concerns. She would have shielded me from their lack of understanding and mediated the challenging and arduous situation. Most doctors are in the business of curing people, especially in pediatrics. There was no cure for June, despite all of our efforts, and I think some doctors aren’t used to turning off that aspect of their job.

There are many lessons we learned along the way, and when we meet parents newly in our situation, we tell them to seek out palliative care as soon as possible. The palliative care team can help carry the load as you work with them to manage your child’s treatment and pain.The nurses that came to our house every week became friendly faces we looked forward to seeing. They helped normalize the process as much as possible, and were a supportive and non-judgmental ear along this terribly messy journey. Not many people understood it, but they did. June died at home, surrounded by her mom, dad and little brother. The days leading up to her death we snuggled her, kissed her and loved her as much as we possibly could. We hired a photographer to capture family moments. I cut locks of her hair and took her fingerprints, handprints and footprints. We cried…a lot, but there was also laughter as we talked about June and her sweet and sassy personality. I told her it was okay to fly to heaven – Mommy and Daddy would be okay.

I will be forever thankful for the last two weeks of June’s life while she was on hospice. They were heartbreaking, but they were also full of beauty, magic and love. Once we stopped doing everything in our power to keep June alive, she was finally able to live fully, free of pain. My baby is no longer suffering. So, today I am doing pretty well.

Genny Jessee is a writer, wife and mother. She is a bereaved parent, patient and family advocate

and co-founder of the June Jessee Memorial Foundation, established to connect parents to

resources for medically complex children.

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