After Paul Died: “Sometimes I Wonder If He’s Disappointed in Me”

Dear friends, we’ve written about Jill and Paul here several times before. Paul had a rare metabolic disorder that the hospital where he was born failed to catch in time. Because of that medical error, Paul suffered irreversible brain damage that left him severely disabled in multiple ways, rated 100 percent disabled (you can read his story here).

Paul couldn’t talk, couldn’t feed himself, couldn’t sit up or reach for anything. A court ruled against the doctors back in 2011, but Jill still hasn’t received any money, and she’s still fighting for justice. Paul died in 2019, and Jill’s world was turned upside down all over again. It’s been more than two years since our last interview with Jill, so we checked in to see how she’s doing now.

Dear Jill, your son Paul died in September 2019. In our last interview, you told us that time doesn’t heal all wounds. How are you feeling about your grief for Paul right now?

I’ve been in a phase of grieving for many, many years, even back when Paul was still alive. I have to say that in the first stretch after the brain damage diagnosis, you’re basically just functioning. You don’t have any time to process it or really take it in.

For the first few years, I had no idea how severe the “damage” was. It wasn’t until Paul’s brother was born five years later and I saw how fast babies and toddlers develop that I truly understood the extent of it. Even then, I still hoped there would be progress someday.

In the first few months, Paul could still track things with his eyes and, with help, hold his bottle. With all the epileptic seizures, that slowly slipped away until there was nothing left. All the appointments, the therapies, the hospital stays, the bureaucratic nightmare, and then the trial. It was so much, and the phases of grief were more like arriving in a new reality.

Paul’s death changed your grief again, didn’t it?

The night Paul died, I was sitting at his bed. Around 3 in the morning, I told him, “Paul, Mom is just so tired and is going to bed now too.” I regret that so much. I wonder if I could have prevented his death if I had just stayed sitting next to him.

Something else that’s hard for me: I can’t remember whether I told him that night how much I love him. I always told him that in the evenings, but I just can’t remember that particular night clearly anymore…

In the morning, he was lying in his bed and simply wasn’t breathing. The emergency doctor got there quickly, then the fire department (I don’t know why they came), and after that the criminal investigators. Everything was treated as a crime scene. I was allowed to get Paul ready, wash him and dress him. His brother, my parents, I, and the aides from his school were allowed to say goodbye. And then he was basically “seized” and taken to the medical examiner. We couldn’t say a real goodbye, and I think that’s why letting go is so hard for me.

For 18 years, Paul was my whole life, and with round-the-clock care we had a very close bond. Suddenly that purpose was gone. If I hadn’t had Paul’s brother, I don’t know if I’d still be here today. A question that has followed me through the years of grief: How would our lives have turned out if Paul had stayed healthy?

Caring for your son for so many years has left its mark on your body. How are you doing health-wise?

After 18 years of caregiving and everything that happened around it, I’ve reached the end of my strength, physically and mentally. I have complex PTSD (post-traumatic stress disorder), a trauma-related disorder caused by grief, and functional depression. On top of that, nerve pain that “wanders” around my body, back problems, and irreparable nerve damage in my arms and hands. Because of stress-related tinnitus, I have trouble hearing and can’t follow conversations with more than two people or with background noise. Then there’s brain fog, broken heart syndrome, trouble concentrating, and panic attacks.

To cover the legal costs, you’ve been working a lot. Something is about to change soon. Tell us about that.

After Paul died, I couldn’t work at all at first. We lived on child benefit (the monthly payment German families get for each child) and whatever household items I could sell. Later I took a retail job at 30 hours a week. On top of that, I delivered mail in the early mornings and cleaned apartments.

At some point my son complained that I hardly had any time for him and was never around. So I stopped the mail delivery. Honestly, I only worked that much because it kept me from thinking.

Working in retail was hard for me. For 18 years I had almost no social contact, so all that hustle and bustle wasn’t easy. I think I wanted to prove to myself with all that work that I could still perform (despite the doctors’ finding that I’d probably never be able to work again)

Now, though, I’ve hit my physical and emotional limits again, because the fight for justice still isn’t over. I’m going to quit my job in October so I don’t fall apart.

How is Paul’s brother doing?

Paul’s brother turned 20 this year. He’s a wonderful son and I’m unbelievably proud of him. He’s open, helpful, very empathetic, and creative, and he finished high school with a great vocational diploma. He’s now starting an apprenticeship in a skilled trade (in Germany, that means paid on-the-job training combined with classes at a vocational school).

In our last conversation, you told us you wished you could finally laugh again without feeling guilty. Has that happened yet?

Yes, the guilt when I laugh is getting smaller. I’d even say that every now and then I can laugh freely. My son and I have the same sense of humor, and of course it’s especially lovely when we can laugh about something together.

Do you have special rituals on days like Paul’s birthday or the anniversary of his death?

I never work on the anniversary of Paul’s death. I just want to spend that day by myself. On Paul’s birthday (he would have turned 25 this year), his brother and I went to his old school and watched a play that was being performed there. Afterward we went out to our yard, let a balloon go, ate cake, and talked about Paul.

What do you say to Paul when you talk to him in your head?

I can’t really talk to him in my head yet. I often think that maybe he’s disappointed in me as his mother, that I didn’t take better care of him. My biggest fear is also that we won’t see each other again after I die.

Talking to other people about Paul, though, I can do pretty well these days. I’m no longer ashamed when I’m sad. And alongside all the pain, I’ve made up my mind to live to at least 100, so I’ll have lots of time with Paul’s brother.