There are some things I have struggled to write about because writing them makes them feel more real.

My brother’s illness is one of them.

He has been dealing with a brain tumor for years.

Even writing that sentence feels strangely inadequate because a sentence makes it sound contained. Like something happened, we dealt with it, and then life continued. That isn’t what serious illness does to a family. It moves in. It becomes part of the background of birthdays, workdays, family group chats, ordinary phone calls and plans for the future. Sometimes it is quiet enough that you almost convince yourself things are normal. And then something happens that reminds you they aren’t.

My brother had a whole life he was building. He is brilliant. He became an Advocate of the High Court of Kenya in 2020. I remember what that represented. Years of school. Work. Ambition. Plans. A future. And then illness began taking things from him. Not all at once. That’s almost what makes it harder. There have been periods of hope. Different explanations. Treatments. Seizures. Better days. Terrible days. And every time things stabilized, some part of me wanted to believe we had been given him back.

Then recently, things became worse. Much worse.

There are details I don’t know that I will ever want to write publicly. Some things belong to him. Some things belong to our family. But I can say this: Watching someone you love lose abilities you once watched them use without thinking is devastating. Watching a brilliant person struggle because his brain and body are betraying him is devastating. And being thousands of miles away while it is happening introduces a particular kind of helplessness I don’t know how to explain. There is nothing useful to do with some kinds of love.

I’m a fixer. Give me a problem and my instinct is to research it.

Who is the best doctor? Which hospital? What are the options? Who do we call? What questions should we ask? What haven’t we considered? There is comfort in believing there is always another phone number to call. Another specialist. Another hospital. Another thing we haven’t tried yet. But serious illness eventually introduces you to the limits of what you can control. And I hate those limits.

I hate that loving someone enough cannot make their body cooperate. I hate that intelligence cannot solve everything. I hate that sometimes there is no perfect doctor waiting at the end of enough research. I hate that my mother can sit beside her son and love him with everything she has and still not be able to take this away from him.

There are moments when love feels enormous. And moments when it feels completely powerless. Meanwhile, my life keeps happening. This might be the strangest part. 

I live in Missouri. I have two small children. I have a job. There are meetings. There is daycare. Someone needs dinner. Someone can’t find a shoe. An email needs an answer. My children laugh. I laugh with them. And somewhere else, my brother is very sick. How are those two realities allowed to exist at the same time? I’ve asked myself that a lot.

There have been mornings when my heart has felt shattered and I’ve still had to get children dressed. I’ve joined meetings carrying information nobody on the other side of the screen could possibly know. I’ve answered normal questions during completely abnormal days. And I’ve learned something I never particularly wanted to learn:

Grief doesn’t always wait until someone dies. Sometimes grief begins while someone you love is still here. You grieve what has changed. What they have lost. What your family has lost. And sometimes you grieve the future you assumed they would have. My children still need their mother. That has been both incredibly difficult and, strangely, a gift. They don’t understand what I’m carrying. They shouldn’t have to. Their world is still full of snacks and bedtime and cartoons and tiny injustices like receiving the wrong cup.

So I show up. Not perfectly. Sometimes distracted. Sometimes exhausted. Sometimes holding back tears until I can be alone. But I show up.

Motherhood has taught me that being present doesn’t require having a peaceful life. Sometimes presence is something you choose in the middle of chaos. His illness has changed the way I think about time. I used to think about life primarily in terms of plans. Next year. Five years. Career goals. The next house project. The next trip. The next milestone.

I still make plans. I still have ridiculous amounts of ambition.But I don’t trust “later” the way I used to. 

Watching someone you love fight for a future they should have been able to assume was waiting for them changes something inside you. There are things my brother may never get the opportunity to do. And lately I’ve found myself asking: Why am I living as though I have unlimited time to do mine? Why am I waiting until I’m less busy? Less scared? More confident? Until the children are older? Until work settles down? Until life becomes convenient? What exactly am I waiting for?

I don’t know how this story ends. That’s probably the hardest sentence in this entire post.

I desperately want an ending I can live with. I want more time. I want another recovery. I want my brother to have the life he worked so hard to build. I want my mother not to have to experience this. I want things love cannot guarantee. So I’m not going to end this with a tidy paragraph about everything happening for a reason. I don’t know that. What I know is that I love my brother.

I know that his life matters far beyond what illness has done to his body. I know that before he was a patient, he was—and still is—a son, a brother, an uncle, a friend, an advocate, a whole person with dreams and opinions and history and people who love him desperately. And I know that watching him fight has changed me. I want to be here for the life I have. I want to take the trip. Try the thing. Wear the clothes. Make memories with my children. Tell people I love them while they can hear me. Do some of the things I’m afraid to do. Not because “life is short” is a cute quote to put underneath a sunset. But because sometimes life teaches you, brutally, that the future you casually assumed was yours was never actually promised. My brother deserved more time without this illness. 

I still hope with everything in me that he gets more time.

And while he fights for his, I don’t want to waste mine.