Theme: Bereavement: Grieving with Others, Extended Family

My friend Liz lives ten miles north of me. The journey between our homes can be made on a highway, but the more direct route hugs the blue-gray coastline of the Salish Sea. Densely populated stretches of land alternate with forests that cascade down hills towards the sea, lining narrow beaches. The Olympic mountains dominate the western horizon and shield us from the open ocean. Our inland sea is gentle, providing shelter to marine life, boat traffic, and us.  

I met Liz, not because we lived 10 miles apart, but through impulse born of desperation. In the unhinged, delirious weeks of grief that followed my son Lucas’s death, I roamed the streets and the internet in equal measure. On the streets, I wandered aimlessly. I often ran to the water. The sea, it turns out, is a good place to scream. Train tracks run along many beaches, and between crashing waves and thundering wheels, there is space for the primordial howl of grief.

On the internet, I searched for someone, anyone, that had lived this journey. Who understood the forces that had shattered our lives. No one I knew understood what it was like to fight for your child for two and ½ years, and then abruptly experience their death.

I found Liz on the internet, where she wrote about her son Colson. I learned that Colson died from the same rare mitochondrial disease that killed Lucas. Improbably, Liz lived nearby.  Maybe, I thought, she could help me? When I reached out on social media, I was surprised that she wrote back right away.

Liz suggested we meet at a coffee shop near the sea. As we set our things down at a tiny table, she looked at me with understanding and offered a wordless hug. No one had looked at me like that since Lucas died. No one I knew understood. The invisible cord of tension wrapped around my chest loosened its grip, and I found myself crying on her shoulder. She did not pull away.

We talked for hours at that tiny table. I learned that Colson died two years before Lucas. At the same Children’s Hospital, in the same stretch of early December. Colson was a beautiful little boy with soft, pillowy cheeks and blue-gray eyes that reflected the sea on a sunny day. He and Lucas were very different, but they also had much in common. A diagnosis, doctors, many medical complexities.

In our conversation, Lucas was welcome. My gregarious, smiling boy. I could share his whole story: the devastating diagnosis and resultant suffering, his bubbly personality and beautiful life. When I stumbled through the parts of Lucas’ story that I find most excruciating, Liz met me with kindness and compassion. Before I left, she pressed books into my arms and gave me another hug.

Driving home, I felt a subtle shift, a sense of relief. Nothing had changed, but I was no longer alone. Liz had offered new guideposts for grief, in the forms of books and ideas and her own tenacious grip on life. And beyond guideposts, I realized that perhaps Liz had offered me something else. Was it possible that in this awful life without Lucas, I had also met a friend?

Adult friendships are not easy to make. The easy camaraderie of high school and college does not necessarily translate to the rhythms of adulthood. If you become a parent, your adult relationships are often shaped by your children. As a rare disease parent, the only friends that will remain are those that choose to learn this new life alongside you. They will be a different kind of rare. You will conclude (once again) that rare is wonderful.

Liz and I are very different, but like our sons, we have much in common. We are both the eldest of six children. We believe donuts are an essential food group. We grew up in strict faiths that we no longer observe. Perhaps most importantly, Liz and I share a passion for poetry, for reading, and for writing. She is a skilled writer and omnivorous reader. A few months after we met, she introduced me to a literary arts community, helped sign me up for my first writing class in years, and encouraged me to blog in this space for CPN.

We often meet near that coffee shop and walk along the sea. When I saw Liz most recently, we stayed out on the wind-whipped coastline until we were stuttering with cold. A train went by, drowning out all conversation. I did not feel the need to scream.

As I told Liz, I have only just begun to grasp that Lucas is dead. Fourteen months into a life I do not want, I see that I cannot will him back. He is not just in the other room. In understanding Lucas’ absence, I see his presence in different ways. Perhaps it is inevitable that I would see this friendship with Liz as a gift from Lucas and from Colson.

Would I rather have Lucas back than any gift? Yes, a thousand times over. All bereaved parents would tell you that. Am I simultaneously and profoundly grateful for this friendship forged in grief? Yes. These realities can co-exist, if only because they already do. One does not vanquish the other.

In a week where many people celebrate love and friendship, I celebrate a rare friendship. A friendship that offers a gentle place for grief. A sheltered sea, perhaps, when so much else feels like traversing the open ocean.

I know this friendship was made possible by our deep and abiding love for our two rare boys. Lucas and Colson, it is because of your unique and irreplaceable lives that we are here. That a new friendship was formed. The words fall short of their meaning, but I’ll say them anyway: We love you.   

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Kim Gilsdorf writes and lives with her family in Seattle, the traditional land of the Duwamish people. She works for Perigee Fund, an organization dedicated to supporting early childhood mental health. Her favorite title is “Mama” to her two children, Lucas and Sophia. Lucas lived with and died from a rare disease, Leigh Syndrome, and his life has forever changed the meaning and purpose of hers. You can find Kim’s writing on Instagram at @kgilsdorf.

Theme: Bereavement: Grieving with Others, Extended Family

Theme: Bereavement: Grieving with Others, Extended Family

Theme: Bereavement: Grieving with Others, Extended Family

The aunt of a little girl, Havi, who died from Tay-Sachs, talks about how loving on Havi and her parents was a gift she gave herself; and on how she is finding ways to keep loving and giving following Havi’s death.

Theme: Bereavement: Grieving with Others, Extended Family

Aunts and Uncles of a little girl with infantile Tay-Sachs — who moved to be near the family — talk about how little grief support there is for family beyond the nuclear parent-child group, including and perhaps most especially after the child dies.

Theme: Bereavement: Grieving with Others, Extended Family

Theme: Bereavement: Grieving with Others, Extended Family

Theme: Bereavement: Grieving with Others, Extended Family

I know you don’t know what to say. You didn’t know what to say when you heard she was diagnosed and you didn’t know what to say when you saw her for the first time with her hair falling out and you sure didn’t know when you found out she died. And that’s okay. How could you? I didn’t expect you to know what to say any of those times anyway. But I’ll be real honest, I didn’t think we would still be so uncomfortable. I thought once the facts were out there, that she was sick, that she died, you and I could figure out what to say to each other. Say something. Say anything. Or say something else. I didn’t expect us to still feel so uncomfortable.

Maybe you didn’t know what to say the first time, the twentieth time, or the last time you saw me. Or maybe you avoid me because it’s just too hard. Maybe I remind you of what could be or what could have been or there for the grace of god. Maybe my story reminds you of someone you love who’s gone. Maybe I make you think about other cancer stories. Maybe when you think about my story, you think of that kid in your grade school that died. Or that kid from high school. Or that awful summer night those neighbor kids got in that car accident because my story, like theirs, upsets the natural order, where children don’t die first.

If you’re a parent, you look through your parent eyes, because your kid eyes don’t fit you anymore. And with your parent eyes, you see in more dimensions, you anticipate danger quicker and easier than you can happiness. You used to feel more spontaneous and be more naïve. And now if you tried to be like that, it would feel like you are trying to button a child’s coat on your adult body. You understand what grandma meant by time flies. You might even throw around a life is short comment to your own kids. Your grown-up eyes have seen more. More happiness. More devastation. And let’s face it, devastation of any kind is hard to look at.

When you are faced with looking at something that’s devastating, you have two choices. Look away or keep looking.

Grief works like that too. Either you are okay looking/being/holding/sitting with someone who is grieving, or it makes you look away. Here’s what I’d like you to know. You might need to look away. You might prefer standing over there or even walking away forever. But I can’t. My grief isn’t going away. I will wear it and bring it everywhere I go. I’ll drag it or it will drag me, forever. It’s not like I can leave at the door or shut it out of my thoughts. I cannot separate myself from my grief. I don’t think any grieving parent can. There are some days that maybe you can’t find it on me. I took a shower, my clothes passed my teenagers fashion patrol, and I’m in a good mood. I cracked a joke, or I got something done. But I’m not over it. It’s a façade. A veneer. It’s still there, I just covered it up for you, for us, or for the event or for that moment. Or I covered it up for myself, so I could make it through to the next minute. But it’s still right here, with me and in me. We are a package deal now. I hope that you and I can figure out how to make space for my grief and me. Not just me.

And I know you want it to be gone or lessened for me. And I love you for that. The thing is, this can’t be done. It will never be gone for me. I’m not sure it gets lessened. I haven’t been grieving long enough to know that. And if I’m being real honest, that thought is scary for me. If it’s lessened, would that mean she’s lessened? Every morning and every night, I’m still trying to figure out how grief and I will coexist. How will we get out of bed, get out the door or do the stuff you non-grievers do? And some days, I sorta figure it out. Other days, grief acts like this uncontrollable toddler, the one the whole store hears crying. And the grief toddler is tethered to me. And it’s all over me. I cannot tell you why one day, my grief and I can be in harmony, and the next day we can’t.

You’ll ask me what made yesterday okay and today so bad? I don’t know. What I can tell you is that yesterday was okay and today is bad. I don’t know why. And tomorrow might be bad and the next day good. It’s all a surprise to me.

Sometimes, if I’m real honest, I think you want my grief gone or lessened more for you than for me. My grief and I make you uncomfortable. It makes you uneasy to see my grief sitting so near to me, blocking your view of the old me. Or what you hope is the fixed me. Maybe you wish I would not let my grief tag along with us as often as I do. I get that. My grief makes me uncomfortable too. 

Have you noticed when I refer to her in the present tense? Don’t think I’m in denial. I know my girl died. There are some days, even these years later, I just still can’t believe it. I still want to say her name, talk about her as if she’s next to me and sign her name on your birthday card, along with the rest of ours. I need to do that. Please don’t tell me some version of she’s in a better place. She’s free of her illness and she’s happy. Her happy place was with me. If I feel guilty about what I did or didn’t do, let me feel guilty. On good days I know I did my best. On bad days I’m convinced I could have tried harder. I know you are trying to help when you tell me to try to get better for my other kids. I am trying. Depending on the day, this is what my trying looks like. You lather on these mini-pep talks, reminding me my kids need me, lots of people are counting on me, rooting for me. I know all that. It’s just hard and heavy and still so very raw. And the thought of other people relying on grieving me is overwhelming. At any moment, my grief and I fight to see who gets to be in charge, and some moments, my grief wins.  

So that’s it. That’s what it’s like, for me, on this day, to be a grieving parent.

Today my grief and I are getting along. I’m not sure why. 

Theme: Bereavement: Grieving with Others, Extended Family

The mother of two daughters, Emerson and Margo, talks about the strange realization that as soon as she became pregnant again, she could safely talk about Emerson, who passed away at 16 months from Type II Gaucher’s Disease, with other people because there was a happy ending. She discusses how this made her feel protective of both her daughters because she wanted them to be seen as individuals and of equal importance in her story. 

Theme: Bereavement: Grieving with Others, Extended Family

In this episode, CPN’s Jennifer Siedman talks with Chelsey Klenke Robertson about the challenges and gifts of loving Craig, her brother who had Hunter’s Syndrome(MPS II). Her mother Kris joins them to talk about Craig’s final days, the grieving process and how Craig’s legacy has impacted their careers.

Theme: Bereavement: Grieving with Others, Extended Family

Theme: Bereavement: Grieving with Others, Extended Family

Parents of a baby son who was born with Arteriovenous Malformation (AVM) talk about the sense of responsibility and energy they feel to share what they learned with others.