Almost six years ago to the date, is when I found out I was pregnant. All moms think they know everything before the baby gets there. It's just the way it is. You say you'll do this, that or the other thing, but you end up buying the Loves diapers and tasting something brown to see if it's chocolate or poop. It happens to all of us. What I'm talking about though, is the assumption that almost all first time moms have, that their children will be perfect.
Somewhere along my journey in motherhood, I read another special needs mom take fault in the old thought that you just care that your baby has ten fingers and toes and looks perfect. That reality isn't so true when you're there in the hospital. Anyone with a child that's had any kind of medical journey can tell you, the only thing that matters is your child surviving, and your survival is second only to that.
The truth is, that birth trauma, complications, and not so "perfect" children is something that just isn't spoken about. Motherhood for me looked nothing like I expected, and for a few years there, was such a lonely existence. Well meaning friends and family assured me that my child was fine. She'd catch up, she'd get there. And yes, it is true, but there was something distressingly wrong with my baby, and no one had the courage to say it, except me.
So why am I up at 11pm writing this on a blog I let die eight months ago along with the beginnings of the COVID crisis? A television show, that honestly I looked at because it had the ever gorgeous David Tennant in, (I could watch him paint walls, truth be told, so the bar is fairly low.) about a family with a daughter (Rosie) who is learning disabled and mostly non-verbal. The very aptly named, "There She Goes".
One episode in and I was sobbing through uncontrollable laughter. They had finally given a voice to these feelings that no one talks about, and most especially emotional process having a child that isn't "perfect" takes parents on.
The first year of Luci's life, I had a myriad of my own problems, but suffice to say her never ending crying, breastfeeding every half hour and never sleeping more than 45 minutes, left me with post-partum psychosis that still can linger at times. Basically I heard her crying at all times, even when she wasn't. I was madly convinced that she was crying, which of course got better with age, but I spent a solid year with that as my reality. I struggled to bond with her, partially because of that, but also partially because the reality was, all she did was cry, and to me, it was me that she didn't like.
Somewhere around a year she turned into a "normal" happy baby. I remember that year in July toting her all over to see friends, and do normal, amazing things. We went on vacation, we visited the beach, it was lovely. That's the first real memory I have of my daughter "liking" me, and I didn't know anyone else in the world felt this way too.
There's a certain grief that I think many people are afraid to discuss, because it's uncomfortable. Who wants to hear someone talk about how they have a child they didn't expect? Shouldn't I be happy my child is alive (I am, trust me, see above)? The grief is there though. It is real, and you can only ignore it for so long before you're sitting on the couch watching David Tennant while you sob your way through a glass of wine.
Parents like this though? They adapt in some really incredible ways, ways I never would have expected for myself six years ago. Things that are so incredibly foreign to the thought of parenting, are somehow normal and mundane. Doctors appointments, therapies, all of that junk? It just becomes so been there, done that, that it is just our lives, and it makes sense to no one but us.
I think that's probably one of the most refreshing, and dare I say healing, of watching this. Both of Rosie's amazing parents are depressed, tired, frustrated, but they shrug it off and just say "fuck it, that's how it is, it sucks, but it's life with Rosie.".
And yeah, that's how it is here.
Today? It was a brilliant Monday. Luci cried until she watched an hour of Pokemon at school lunch time (Which meant yes, she basically melted down for three hours). Andrew was parent MVP today while I took and anxiety pill and hid in bed, waiting for it to kick in. We got it together, bribed her with some fruit snacks, did her school work. This afternoon? I called her ophthalmologist for an appointment, the woman who answered inquired why, and was basically stunned into silence when I said her eyes weren't being symmetrical, but she has cerebral palsy so it could just be her being weird and nothing at all. I know, totally unpolitically correct, but my kid has brain damage, her eyes might just be like that, and I'm not going to disavow knowledge of it. It is what it is.
Our life is complicated, and it's okay. We live in Luci's world, it's insane, messy and completely by her rules. She screams when things don't go the way she thought they would, she hits and pinches because words don't come easy and more times than not she just can't "do" whatever life is asking of her. If any object she gets isn't red? Meltdown. And I don't even know what my kid's weird thing about dogs is. It is what it is, and that is okay.
I think that's one of the most beautiful things about the show though, they did a really eloquent job of showing the dichotomy that was parents interacting with other adults. Friends, family, strangers, and how their mixed myriad of approaches to both Rosie and her parents, impacted them.
It's one of those things I only have the inside view of. I know where I am, but I don't know what it looks like from the outside. Lots of times, we are the loudest in the room with the biggest emotions, and I know that has to be hard to deal with. I know the toll it takes on friends and family to accommodate us at some times, and I know what incredible love we have been given.
When I think about it, it brings me to tears to know that in our lives we've been able to have people around us that treat Luci with such grace, compassion and understanding. It's a fine line, figuring out where the expectations of her are. What point do we push to help her to become acclimated with society, and at what point do we say "eff it"?
Then, a few weeks ago, I had a moment that hit me with such gravity that I have been thinking of it since.
Luci and I drove over to say happy birthday to a friend, and she got to see both the friend and her brother for the first time in person in months and months and months. Socially distanced of course, but Luci was unable to find any words. Her friends? They held space for her, they talked to her, they didn't press her to answer. They understood that she was a person, doing her very best, and in that moment she was worthy of their friendship. My child. My imperfect, complicated little screaming baby, was worthy of friendship.
It's everything a mother ever asks for when you start to hear doctors throwing around diagnosis and outlooks. When it all began years ago, my greatest fear for my daughter was that she wouldn't have anyone besides us that loved her. I cried more nights in bed, playing doctor google, trying to figure out what her future would be like, and if anyone would make that space for her.
She's five. And they did.
At the end of the day, I just feel incredibly grateful to have stumbled on this show. I feel grateful that it helped me cry some tears I have had for probably five of these last six years. It also crystallized some things for me though. Some things I couldn't really figure out until I saw someone else on this journey.
Most of all though, if you've gotten all the way through what is probably a slurry of run on sentences and garbley gook that I'll regret not editing in the morning, know that if you are in our circle, I cherish you so much. I have held myself together as a mother because of those around us. I have held myself together with kind smiles from across the room while I held a screaming child because of you. And I am so damn lucky to have that.
