842 days. Today Jude has been gone for as long as he was here. I don’t understand this and I want to crawl back into bed at the thought of it and hide from everything.
The 842 days that had all three of our kids in them were everything. In our 15 years together (ten married next month) all of our talk of somedays has always been filled with kids. We’d laugh as we’d debate back and forth about how many, never guessing how little the answer to that question would be in our control. Years of heartbreak and loss went by, broken up by Isla’s arrival in 2010, and Thomas and Jude finally joining us in 2014. It took forever to get everyone here, but then they were here and we had everything. After all it took, all the years of surgeries and injections and bad news and ultrasounds and tears, we had our family and everything was right with the world.
For 842 days.
And in an afternoon a virus stole our life from us. 842 days later four of us still here, still reeling, still trying to figure out how you keep going when one is suddenly gone.
Jude was here for such a short time. How does a life that short have an impact this big? He didn’t have his own people. His friends were our friends. His people were our people. He never had the chance to go to school, to take swimming lessons, to play t-ball. He’ll never ride a bike or fall in love or get on a plane on his own. We’ll watch Thomas go through all of life’s milestones and we’ll show up and be happy and excited and proud. And we’ll take a deep breath and hold tight to each other, knowing that another boy should be right there beside him. Jude was smart, surprising us with the things he’d come up with, and we’d look at him every day and wonder what he was going to do with his life. We couldn’t quite figure him out. There was always something about him that was a little different, a little extra, a little special. We couldn’t wait to see what that was going to turn into. And then he got the flu. He got to be a baby and a toddler and then he was gone. This brilliant, hilarious kid who was constantly causing trouble. Our tiny lion with the biggest laugh and the most loving roar. Gone.
Those 842 days went by so fast. Even those early months when we had to feed two near-term babies every two hours around the clock, and our three-year-old still needed us so much. We were exhausted. We were deliriously happy. They all needed us. All of these beautiful little people were ours, and we got to keep them, and we had so many years ahead to share the world with them. We couldn’t wait for everything. We couldn’t wait for every single minute.
These 842 days without him have been different degrees of pain. There are days that are better or worse than others, but every single one hurts. Every minute of every day, every part of my body and soul wants my kid back. The number of days he was here were so short. The number of days we’ll be feeling his absence will stretch on for as long as the rest of us are here. It’s never going to get better. The world keeps turning. Life moves on. People stop checking in. But we’re in this forever. It’s always going to be some degree of this. I’ve been through a lot of loss in my 35 years and have a fairly healthy perspective on it at this point, but this is never going to be okay. Losing your child can never be okay.
There’s a little empty chair in the play room now. There’s an empty car seat that we still don’t really know what to do with. We had to take it out recently after a minor car accident put the van in the shop, and I confess that we’re considering putting it back in. I don’t care if that’s weird. That space was his and we all miss him in it, and all four of us miss his car seat there. There’s one little toddler bed where there should be two. Someday soon we’ll take it out completely and give Thomas something bigger, and that’s going to be another hard day. They were supposed to grow into bunk beds. Now we don’t need them.
I’d give anything for him to be here, building his own life and legacy, deciding what he wants to do with his time, figuring out what makes him tick and going after it. I miss his trouble. I miss his laugh. His absence is tangible and our house is sadder because he’s not in it. I miss taking him on adventures. I miss hearing him yell hello to penguins. I miss his rabbit-soft strawberry-blonde hair and his impossible eyelashes and his sweet hugs and his wonderful little voice.
I don’t know how it’s possible that he only got 842 days and I get so many more, and that somehow I’m supposed to keep going without him. I’ve just survived as many days without him as I got to have with him, somehow. Pardon me while I allow a geek moment to show briefly, but I’ve been watching Star Trek: The Next Generation with my kids this summer, both of them being huge fans of all things space. A quote popped up early on: ‘Every moment of pleasure in life has to be purchased by an equal moment of pain.’ I sat with it for a few minutes, thinking about the many, many moments of pain spent waiting for all my kids, and how worth it they all were when those kids were finally here. But I don’t understand this balance sheet that gave me 842 days of joy and is leaving me for the rest of my life with a massive wound that will never heal.
Not long after Jude died a friend sent me a blog written by a local mom who had lost her daughter to SUDC. Jude’s death having been tentatively ruled the same way while waiting for pathology results, I read through every word, needing something to make sense of in the rubble that had just been my happy life. I came across a post like this one and thought ahead to now-ish, to some date in August 2018 that I hadn’t calculated yet and wondered how I’d make it that far. I couldn’t see through the days ahead, though I knew they’d exist in some way. I reached out to her and discovered she was pregnant with twin boys, and wasn’t able to respond again (I’m sorry, local mom). Twins are a sad reminder for me now of what we’ve lost in our family and of what Thomas has lost, that we can never give back to him. But I was glad to have found this blog when I did, to see that somehow she did make it through that milestone, that she had survived it.
Today is hard. Today is hell. It’s another reminder of how insanely short Jude’s life was, and how long the rest of the years without him will be. Today I wish I could stay inside and hide from the world. Instead it’s a Saturday filled with the last day of little league, which means a lot of great people, some less-than-great people (like any children’s sport, really), and one little boy missing from the festivities, instead of sitting next to his twin brother in his matching uniform, getting his first medal, cheering for his team. It is what it is. It’s not what it was supposed to be, and it never can be now.
When little league nonsense is done later today I’ll give myself time to wallow and spend some hours wrapped up on the couch with Craig and the kids. And tomorrow we’ll get up again and tomorrow will be better. Tomorrow I’ll be back to work, getting everything ready to talk to you about the flu this fall. Because I only got 842 days with my kid, and the reality of that is horrific, and if there’s ever anything I can do to prevent anyone else from being in this situation, I’m going to do it.
But today is sad. Today Jude has been gone as long as he was here and I just want my little boy back.