Hi there. My name is Alysa. I’m not dead. I’ve just been silent. For a long time.
Quick update: Oliver, my second-born, is nearly three and healthy. He’s doing all kinds of things that were never expected, which I’ll get to later. If you don’t remember about lissencephaly, you can read the very engaging copy I found online the day he was diagnosed at the link above. The short version is, he was born with a smooth brain. About as worst-case scenario of an MRI as there is. At 5-weeks-old, the doctors told us not to expect any development skills past a 4- to 6-month-old and to take him home and enjoy him now – because it is the only time he’ll ever be normal. Harsh, but true. And frankly, sometimes I like my truths to be harsh.
Margot, Ollie’s big sister, is almost six and in Kindergarten. She is quite the opposite – reading at second grade level, killer vocabulary, logic that makes my head hurt. And always, ALWAYS on her baby brother’s side.
The instant people learn about my son, they, almost comedically, tell me how “extraordinary” I am. Total strangers stop me mid sentence to put it out there. I know it’s meant well and probably genuine. But it’s also not what I think and not what I need.
When you spend every single day wrapped up in medication schedule and refills, therapy sessions, wheelchair accessibility, strategic planning for simple shopping trips, nutrition calculations, monitoring for choking, making sure that every interaction is beneficial to his development, finding a way for every experience to be enjoyed at his level, watching and counting seizures as they take over his little body, guessing what’s wrong with him when he can’t tell you, loading and unloading equipment, planning for future equipment needs as he grows, praying for four hours of sleep and oh, say, trying to be on time and on-point for a very good full-time creative job – you don’t care if you’re extraordinary. I want to be ordinary.
Maybe I’ve been sulking for the last year. I’ve definitely been selfish to keep all of Ollie’s updates to myself. But maybe I felt like if I just kept the details to myself that I might, maybe, just blend in with ordinary people a little better.
So why now? I’ve had a weird week. On two separate occasions, I’ve come into contact with people that are just starting their journey of grief. In this case, it was loss of a child and divorce. But grief, loss and sorrow – the kinds that gnaw at your insides and tell you you can never be normal again – they’re not synonymous with any particular tragedy. And on both counts, I found myself saying the same thing – “You’re in a dark place right now. It will take you a long, long time come out, but it will happen. And don’t let anyone tell you it gets better. It doesn’t. It just gets normal. And that will be ok. In the meantime, I know you and I see you and I’m here – to sit in silence, sob deep, ugly cries or pound the walls down.”
Ironically, in the last three years, I’ve found myself approached by all number of friends and colleagues as they’ve initially suffered their own losses – death, diagnoses, watching their children suffer. And the truth is, they would never have come to me before. Because grief is a club. A really, really sucky club that you don’t want to go in. But once you’re in, you see the other members everywhere. And you realize that only they can really understand you.
It actually felt cathartic to speak to them from a veteran’s point of view. I’m now able to pass on the things that have shaped me and gotten me through. The way this thing has expanded my ribcage to make room for the excess sorrow and excess joy. And then I became humbled.
The day I got Ollie’s diagnosis, my vision went black. It was as if his entire future got wiped through with a messy sponge – not gone, but not legible either. And there was NOTHING out there for this research fanatic to turn to on the entire internet. Except for one. I found one mom’s lovely blog about her beautiful boy Rowan and his big sister. (Hi Erin! Remember me and that random email you got three years ago?) I devoured every post on her blog in one night. It gave me insights that I needed and a vision into the future. A future that included loving and being proud of my boy JUST as much as I would if he were “normal.” Erin was so sweet to answer me and tell me about her experience, as well. Even now, if I need to know something about Ollie and my dad (who’s a doctor) is out of guesses, I don’t turn to medical professionals. I turn to the support boards of other Liss parents. Because they know.
Paul said it this way: “All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us.” (2 Cor. 1: 3-4, MSG)
That is why I am going to blog again, if it takes every shred of my pride, effort and sleep. Because someone else out there right now is getting news that will shatter them. And they might just be searching for someone, somewhere in the vast stretches of our “connected society” that could actually relate to them. And if I stay silent, I cheat them of the very thing that brought me through the darkness.
Over time, I’m going to make a lot of changes to the format and layout you see now. It will focus less on design and more on us- our broken, stubborn, scrappy little family. Because I believe in this day and age, there are enough blogs on pretty, perfect things. And not enough on the harsh truths that need to be said in order to pull us back into community with each other.
And by the way, the next time you meet a special needs parent and you’re freaking out internally because of my earlier rant, just say five little words: “You’re doing a good job.” That’s all we want. Not to be extraordinary, but to be enough.