where do i possibly begin with this one?
rewind to thursday, may 16th. we just got home and i just nursed mush. then she got down, crawled across the room, pulled up to stand on the little table and stood there with her back to me and bonzo. she reached for a couple books with her left hand, seemed to loose her footing and tumbled to the left. i leapt up to get her – i knew she'd be scared and upset but it was just a garden-variety tip-over so i didn't think much of it.
she cried in my arms like usual then it slowed and stopped, all as per usual. she seemed like herself but something (and i don't know what so i'll just play the mommy-card on this one) compelled me to sit her on the floor to make sure she was okay.
she toppled right over because she couldn't hold her balance.
two minutes later, choo choo came home right on schedule and i immediately hit him with the details. i was starting to panic.
i called the pediatrician's office and as i was on the phone with a nurse, chooch noticed that she wasn't moving her left arm or leg at all. she was calm, alert and generally herself but her left side wasn't moving. we hung up and went to the emergency room. my mom met us and took my sweet bonzo home.
tests, scans, phone calls, waiting, worrying. then we got transferred to the hospital.
and to make a very long and traumatic story as short as possible, we learned the next day that my baby girl had a stroke. oh that word. it sucks the air from my lungs when i hear it, say it – and type it.
they believe it caused the fall, not the other way around.
we stayed in the PICU for three more nights. the nurses and doctors were incredible but it was the single most traumatic event in my life – ever. and even more so for mushy. she had to endure way, way more than her fair share of tests, pokes and prods. and that's putting it lightly.
she was literally glued to me – right where she belonged – our entire stay. she began to perk up and become more like her little self as time marched on but she was so scared of the nurses and doctors and all their procedures that she had no motivation to do anything but nurse and cuddle. she'd wave and smile for her daddy – though not let him or anyone else hold her. i was in bed with her from thursday afternoon until we were discharged monday afternoon. i basically got up to run to the bathroom as infrequently as i could manage to try to spare her any more anguish and that was about it.
we weren't sure what her recovery would look like. as time went on at the hospital, we were seeing very minor movement develop on her left side. i had no idea what to think – or feel. it was (and still is) more than i can quite process. her personality was intact, she was alert, she waved, pointed, played with her toys, babbled her babbles, said her words 'mama' and 'yeah'. she was herself – with the exception of moving her left side – when she wasn't scared that someone other than me would touch her.
we were discharged monday and went home. when we got here, i walked her around the house and talked to her about being home so she could take it in.
we went into the front room and i sat down on the floor with her in my lap. she motioned as she does when she's ready to get to crawlin' so i – hesitantly and curiously – set her down next to me on the floor. she proceeded to sit up by herself, shift forward onto her her hands and knees and crawl. i called the PICU nurse we'd just said goodbye to fifteen minutes prior and told her – she just happened to be the one who answered and was thrilled. then chooch called our beloved pediatrician who just so happened to be in her office to pick up the phone – she was astounded. to say it was the last thing we expected to see in that moment (or anytime soon, frankly) is such a huge understatement.
her movement progressed by the hour for the first couple days. she just picked up where she left off: crawling, standing, moving and shaking. and she's continued just doing her thing – and learning new things all the while.
it's been just over three weeks now and if you saw her you probably wouldn't be able to tell anything had happened. her young age is on her side. her brain is still so plastic – so recovery like this can happen. there is some posturing with her left hand that's noticeable to us because we know what to look for. and she's weaker on the left than the right but you couldn't really tell unless you were looking for it. she just looks like a sweet, happy, pudgy, curious almost-one-year-old – because that's exactly what she is.
we're doing physical and occupational therapy with her to be proactive and to fine-tune the fine-motor stuff that still needs fine tuning and keep our eyes on her progress. the therapy part is equally motivating and difficult. it's obviously amazing to watch her keep doing her thing but i'll admit it's difficult to feel like i'm pressing her to do stuff when ordinarily i would never prod the process along. i feel like i'm constantly monitoring her left hand, arm, foot, leg and their movements. it's exhausting. i want her to be able to develop as she develops and reach milestones when she's physically and mentally ready. but now? i get scared shitless that she's not doing something that maybe she should be able to do – even though a month ago i wouldn't have thought twice about it.
lots of ups, lots of downs. and the downs are hard. another doctor from our pediatrician's practice whose child faced some health issues in her infancy told us that this process is a marathon not a sprint. and he said there'd be ups and there'd be downs. and he said to just take it all twenty minutes at a time. in the moment i just kind of nodded because i knew he knew. but now i know too. he's so right.
there are still more questions than answers. we don't know what caused this to occur and have no idea what this means for the future. will this happen again? i'm worried sick. to put it lightly and quickly. i'm devastated, scarred and baffled – but i'm simultaneously thankful and thrilled with her recovery so far. ups and downs. life goes on. it has to even though there are plenty of moments everyday when i wonder how it can.
our next step is likely UCSF to see specialists and hopefully get one step closer to some answers – and hope-hope-hopefully some peace of mind. if such a thing even exists anymore. and i'm not sure it does. will there ever be a minute in my day that i'm not riddled with breathtaking worry? i can't imagine what that would feel like anymore.
and bonzo. oh that guy's been a trooper. we were abruptly separated for four nights and more than three days. it wasn't easy for either of us. we had some teary goodnights via facetime but we had some juicy visits during the day. he's had to process so much, too. he's had lots of big feelings and i'm so thankful for that. we've told him what happened – enough so that he can feel informed. we've reiterated many times that no one caused it to happen. and we've let him know he can talk about it or ask questions anytime he wants to. and he has. and he helps life move along. whenever i feel like pulling the covers over my head, i look at those two (well, three if i count chooch!) faces and try to put one foot in front of the next and keep at it. we still need to laugh, play and live.
i didn't know whether i'd write about this all here. i thought about it for a little while but ultimately, i feel like it's actually helping me face it, process it, accept it. so yeah. that's what's been going on lately for us.
here we are, me and my girl, a couple days ago. horsin' around, just the two of us – and her two new teeth.