Streak for Stroke!

A few months ago I joined a couple Facebook groups for parents whose kiddos had a stroke. Which is weird sentence to write and even weirder to live. It was in these groups that I found out that May is Pediatric Stroke Awareness month. Which as a mom of a stroke survivor (they call them warriors), I'm really happy about. I'd love more research and treatment options! But I also worry that it's too much for people to add another sad thing to be aware of. I mean, it's a lot. Especially sad kids things. Plus I have this acute longing to be unaware of pediatric stroke. I told a co-worker recently May was Pediatric Stroke Awareness month and she said, "Huh. I didn't know it happened often enough to have it's own month." I wasn't surprised that she had never heard of it but I was surprised how jealous it made me to know significantly less than I do about pediatric stroke. And while more research on how to best treat a child who has had a stroke is needed, I can't say that I wish everyone knew about this. I think back to being pregnant and trying like hell to calm all the worries. Worries my kid would have Downs Syndrome, Autism, microcephaly, or tiny Gilly arms (a Kristin Wig's character from SNL). It feels mean to put another worry on a mama. And yet, this happened to me and it's happened to many parents out there and they are being really strong and brave for their kids by advocating for more awareness and funding. And despite all my mixed feelings, these parents are inspiring.

So I was relieved when I saw one of the moms had organized an event called "Streak for Stroke" where folks could go and get a purple streak put in their hair (purple is the Pediatric Stroke Awareness color). While it was located in Idaho, people were encouraged to get a streak of purple in their hair where ever they lived. This felt like something I could do. And I realize I'm more than a little vain and shallow as my version of getting involved is doing something that also makes my hair look awesome. But honestly, I'm just so happy I found a way to participate!

A year ago I was nesting and puttering around the house. Looking back there is just a twinge of pain thinking about how differently things turned out from how I had imagined. Nothing can really prepare you to be told your brand new baby is having seizures due to a stroke he had sometime around birth. The shock is immense. A lot of internal double takes and slow blinks. Darry was 4 days old when he started having seizures in his hand. All I wanted was to take him home and learn all there was to know about this new little bean. I was full-on smitten. I told our favorite delivery nurse, Ann, who was about to hold him for the first time to prepare herself because Darry was a looker. She laughed and told me all these feeling I was having were only going to get better. And bigger.  But instead of taking him home to test this theory, I had to hand him over to a team of doctors and nurses who worked like hell to get his seizures to stop. And they did.

One of the very difficult things about strokes in babies and young children is that the effects are far reaching and often unpredictable. We have no idea what all the effects are going to be. Right now, it means that he prefers eating with his left hand. He likes to keep his right leg (which is his affected side) tucked in when he sits. At 11 months old he isn't walking quite yet but it seems like he will soon. And he seems to be trying to say a few words. But there are still so many milestones that could be difficult for him down the road but aren't worth worrying about just yet. It's that E.L. Doctorow quote, "It's like driving a car at night. You never see further than your headlights but you can make the whole trip that way." Which is beautiful even though most days I wish I could see much, much further.

Our first day out of the hospital we were told to go get Darry's anti-seizure med prescription filled. Shaughn went to Bartells where they said they had it only to wait around for a long time to discover they didn't have the med in liquid form. We were crazy tired. Shaughn had gone by himself and came home defeated and anxious. We had to give Darry his first dose at 8pm and it was already 5:30pm. One by one we struck out of pharmacies until we finally got good news from the Bartells in Magnolia. Shaughn was so tired at this point that he wasn't sure he should drive. So I told him I would drive if he would go in and get it. I didn't want to have to change out of my ratty old sweats that I had oddly paired with a button down western shirt as I didn't really have any nursing clothes. He agreed and off we all went. When we got there, I couldn't believe how nice this Bartells was. I mean it was fan-cy. Shaughn went in to get the medicine while I nursed Darry in the back seat with the windows rolled down because it was very hot that night. A group of tween boys came and were talking and messing around and one of them started throwing his change in the parking lot. When Shaughn came to update me on how it was going (Darry's insurance policy had originally been put under A Baby Boy O'Keefe and when they updated his name they gave him a whole new policy number which was difficult for the lady ringing us up to navigate), I said, "Shaughn! Where are we? Those boys are literally throwing away their money!"

Shaughn was leaning in through the window to talk to me in the back seat. A fancy Mercedes SUV pulled up next to us and narrowly missed hitting Shaughn despite there being MANY other places they could have parked. I was very annoyed and while Shaughn went to check in on the prescription I went down a rabbit hole of anger. We were trying to get our brand new baby his anti-SEIZURE medicine which is a fucked up thing to have to be doing and some rich bastard nearly took out the other half of my team in this shitty situation. The sheer entitled attitude of someone putting my husband in danger so they could park 12 feet closer to their super fancy Bartells while the rest of us have just regular homeless-riddled Bartells sent me over the edge in hostility.

So it's no surprise, really, that when Shaughn came back with the medicine in hand and I got out of the back seat to get in the driver's, I dinged the shiny Mercedes just the tiniest bit. I immediately apologized to the car, because I had lost my mind, only to recant my apology as I got into the car saying out loud, "Actually I'm not sorry. Maybe if you hadn't parked so close, nearly SMASHING my husband, I wouldn't have hit your car with my door!" Which is crazy, yes, but wouldn't have been so bad had there not been a passenger in the Mercedes. Who had her window rolled down. And was now looking at me with haughty snooty shock. I managed a contrite oops look before losing my mind again and glaring at her. I then backed out and raced away as she got out of her car to assess the damage and I assume to throw her change and small bills in the parking lot. Shaughn and I felt like bank robbers and literally high fived each other. It was then that I realized my western shirt was still unbuttoned from nursing Darry. I have never felt more like a crazy bag lady in all my life.


We've come a long way since then. Darry is off his drugs and I'm wearing normal clothes again. Anne, the delivery nurse we loved, was completely right, my feelings for Darry have only gotten better, and bigger. Not only that, but I have awesome hair now.











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Comments

  1. You are freaking fabulous. Happy first year anniversary to mom and dad- you guys made it, and Darry *is* quite a looker!!! Cheers! ��

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