You were far more self-aware than any other 20 something year old I have ever met. Once you chose to stop pursuing aggressive treatment and elected for palliative care, you started to really dig deep into contemplating what that meant – what accepting death meant.
You began reading books by Kubler-Ross and talking about what death would look like for you. And what it would look like for us after.
I remember this one particular conversation like it happened yesterday.
We were standing in the kitchen, both drinking coffees.
Out of no-where, you said to me: “You can’t break.”
I laughed it off – not really sure what you were talking about. But you had your serious face on and insisted on making yourself heard.
“This must be so hard for you. Losing a child. But after I am gone, you can’t break. You have to find joy still. For Ali.”
You loved your little sister more than anyone else in the world. It made sense that in considering this huge thing you were thinking about her.
I remember promising you that we would indeed “not break,” but I didn’t think too much of it at the time. The doctors had predicted that you probably had years left. I doubt I would have even remembered the conversation years later.
Except that twelve days later, you were gone.
And all of a sudden I was furious with you – how dare you to ask me not to break? To find joy. You were asking something so enormously impossible of me.
I wanted to break – to climb into my bed and never ever get out again. I could not face a world with you no longer in it.
The days after you died were full of decisions that no parent should ever have to make. We let your little sister help plan the funeral – she said she wanted to make three choices for it. (She gets her self awareness from you.)
She chose the dress code – tie-dye.
She chose the reception meal – pizza.
And she insisted there would be no flowers. Because, in her recollection, you thought flowers were stupid.
And so in the absence of flowers, we asked people to donate to a memorial fund. We didn’t know what we would do with it yet – we figured we could deal with that later.
In the days that followed your funeral, not breaking still seemed like a monumental task that you had given me.
But days turned to weeks and soon a month had passed, and the fog of confusion was beginning to lift. I was able to start thinking a little and realized that I needed to use that memorial fund to find a way to bring joy to others and to help your sister to celebrate you.
Eight weeks after you left us, we founded a charity in your name. Your sister named it.
Oh, I wish you could see your sister now! She has a huge voice in what projects we choose, and she has become a fierce advocate.
This girl is going to change the world, one small step at a time.
We have started attending community events and setting up a table talking to people about our work. I had not planned to take her with me; I thought it would be too much talking about her late brother to strangers.
But she got her serious face on – the same one you used to get and insisted she was coming.
You would be so proud of her – she stands up so straight and tall and tells people about our charity, about the work that we do. She tells them about your experience in foster care before you became our son.
And when she talks about you, she radiates – she loves to tell people about her big brother. She misses you, of course – but there is joy too.
In every project, we complete there is joy. In talking about you, about how you became ours, about your all too short but amazingly impactful life – there is joy.
It became easier once we started – this finding joy thing. We are relearning how. We figured out how to smile and laugh again.
We went back to fostering. People tell us we are a little crazy to do that – but the thing is – being a foster parent bought us you – and you were the best thing that ever happened to us.
You have a little foster brother and sister now. They are loud and sticky like babies and toddlers are – they would drive you crazy. But I think you would also adore them.
Our house is filled with joy and laughter; my heart is filled with joy – which amazes me because, for a little while there, I was sure I would never feel anything except empty ever again.
I wish you could see it all. I wish I could talk to you and tell you all about what we have done since you left.
Most of all I wish I could tell you one thing: I did it.
I did not break.
Even when I wanted to – I remembered that you had made me promise not to.
I am still here.
I am still standing.
And I am still finding joy.
Thank you for knowing that I needed to hear that from you. I needed your voice in my head, pushing me along. Your voice is still there, encouraging me along – reminding me to find joy.