Happy birthday Ezra. What are we supposed to do? How do we celebrate your birthday when you aren’t here?
I can look back in this blog and see Christmas 2009, just a couple months after we learned you had cancer. We had Christmas at home, and you started your fourth round of chemo 3 days later. I see when we sent out your second birthday invite… so full of hope. The day of your big party – so much smiling… so many happy people. We were sure you had no cancer left. I remember the day before you turned two – the day after we had your party – when we learned you’d relapsed. Hearing – again – there was no known cure for relapsed neuroblastoma. We were sure we’d find a way – you’d be the one to throw your middle fingers to the odds.
I remember the day you died. Holding you in my arms. Your mom holding you. Thinking this couldn’t be real. Watching the heart rate monitor numbers get smaller and smaller. I remember your mom telling me to turn it off. I couldn’t believe the numbers wouldn’t go back up. I couldn’t think past the alarm – why would I turn it off? How will we know when the numbers go back up? You couldn’t be leaving – what would we do tomorrow? We still have to fix you – where are you going?
I remember we stopped and bought coffee at 3 or 4 AM on the way home from that night. I had no idea why we wanted coffee. I had no idea why we should do anything. I couldn’t feel anything. Your mom sitting next to me. Her shirt wet from so many tears. Our bodies so tired from fighting with you so long. You must have felt so tired for so long? Were they asking me questions about my drink? Why does that matter? Why does any of this matter?
I remember your 3rd birthday. Watching that video of you over and over and over again. I remember your mom and I trying to figure out what we should do for your day. How to… celebrate? Remember? What do we even call it? And then today – a year later. Those same wonderings. We won’t stop fighting your war on neuroblastoma – we’ve met so many families who are feeling this same thing. It’s not right. I’m so sorry you had to feel all that. I’m so sorry none of us could find a way to fix you in time. We miss you so much. We love you so much.
I woke up this morning to Robyn yelling my name. Charley’s MIC-KEY button had fallen out in the night – inside it had sprung a leak and the small water balloon that holds it inside him had emptied. The button simply slid out while Charley was sleeping. Which means the hole we place it through had been closing for hours while he slept. The MIC-KEY button wouldn’t fit back in. The same thing happened to the last one – so we have no extra. The last time this happened, Charley had to go into surgery to have the hole expanded.
We spent all day today trying to get the MIC-KEY button back in and couldn’t. Luckily we had a smaller tube we could put in so Charley could get his food and medicine. It won’t last though, so we may have to go in for surgery over the weekend to have the correct size and button placed.
We worked on that til 3PM, when Charley finally went down for a nap. He’s tired.
Ezra would have been 4 today. We were supposed to have a 4 year old and twin 2 year olds right now. We were supposed to be watching them from the kitchen window while Ezra played with his little brothers in the yard. We were supposed to be asking Ezra what he learned in pre-school.
We weren’t supposed to measure everything in ml. We weren’t supposed to have more medical supplies than children’s books. We weren’t supposed to know 20 families by name who’d lost kids to cancer.
Life isn’t the same. It doesn’t “just get better.” You know when you have a headache, and you find yourself more agitated than normal because there’s this pain that’s constantly gnawing on you? You snap easier, you have trouble focusing? We lost 2 of our 3 kids – that pain doesn’t stop. It changes, sure. We see beauty in places still. We smile still. We laugh. Through it all is this dull pain, this knowledge something is off kilter, something is missing, something has happened. Sometimes it gets sharp, and it breaks us for an hour, a day, a week. Our life is still full of medical issues – a simple mishap for Charley (the MIC-KEY button coming out) means we’ll spend all day tomorrow in the ER, and Charley will be getting surgery yet again, at 2 years old.
We are fighting to let people know about neuroblastoma and to cure it. People say “don’t tell the sad, tell the hope. No one wants to hear the sad.” But there’s no need for hope if it doesn’t spring from sadness. Hope is toward better. It comes from a place of worse. We’ll only get louder – this war can be won, by all of us. We need attention on it. We need people raising up fists in the face of neuroblastoma. Not afraid to be loud, to be persistent. Did you know we’re personally hearing about new kids with neuroblastoma almost EVERY DAY? We’re meeting families constantly? They’re all being told the same thing – 30-40% chance of survival. Once a relapse happens, there is no known cure. WHY WOULDN’T YOU SHOUT THAT FROM THE ROOFTOPS TO GET MORE ATTENTION ON IT? WHY IS IT “NICE WHAT WE’RE DOING?” This is a war, and if you have the ability to push the fight forward, we want you to do it. Tell the stories. Give toward the cure. Become a doctor. Share a link. Write to congress. Help us fix it – because of Ezra. Because of Ronan… Layla… how many names do I need to write? I can tell you dozens from memory.
Happy birthday, Ezra. We love you so much.