It was pouring rain (like it has been for most of the past month) and the kids had an impromptu hoedown jam session!
Micah on violin, Mack on ukulele and Moxie with the moves;
There is nothing like a crisis for making social media meaningful.
I mean, day in and day out, it’s just an information clearinghouse and news board. Then something huge happens and reading each and everyone’s comment of love and support means the world to me, when all I want to do is crawl into a hole and wake up with this all having been one horrible nightmare.
Dana had another surgery
They worked on patching up his innards, and fixing up his femur. The latter was infected and the former was probably causing his sepsis. So with both fixed, he should hopefully be out of the woods. Fingers crossed and laced in prayer.
I keep thinking we’re in Canada.
The hospital staff are so polite and friendly, it’s virtually un-American. I mean, everyone in this place is ridiculously nice. Example: I only had a large bill to pay for our lunch at the cafeteria – they didn’t have change, so the janitor paid for our lunch.
Then – my huge stroller was hogging up the aisle and an orderly wanted by and said “excuse me, I’m sorry” so many times, you would have thought he was the one inconvenience me. I was shocked.
There’s a level of kindness here that I have never experienced before in a hospital. It’s laughable comparing their sweet mottos and little slogan-signs of human-kindness (“being kind is good for you!”) with Oakland Kaiser’s “get well or die fast” vibe. I’m infinitely glad that Dana got this end of the stick. And infinitely glad that, by extension, we all did too.
I have never experienced the ICU before.
Despite the fact that Moxie and I both have disabilities, we are perfectly healthy and always have been (knock on wood). The rhythm of it is foreign to me, and the sway of emotions unfamiliar. The day begins with fresh shock – ‘oh shit, this is NOT a dream…’ and seeing Dana and the absolute sorrow over his pain, and over this stupid, senseless horrific event that will certainly change his life.
By the end of the day, peace is made with it all – and every tiny up-swing in his healing is celebrated and blown up until we all feel like everything is going to be just fine. We go to sleep. And wake up, and it all begins again.
You’d think my Mom would have dissolved over this. She lost both of her parents only months ago.
But she has risen to it like good cream in a cup of milk. She’s camping out in the waiting room and developing iron in her knees from kneeling on them in prayer. We are all so grateful to her, and to Yu Han, Dana’s eldest daughter.
Yu Han has taken over all of the phone calls, the nitty-gritty management of the details of insurance, of payments, of “regular life” that kind of rake over your brain and make your pores scream. And she’s doing all of this with her heart in agony over Dana lying in the ICU, working through his walk to the edge of the woods.
I have so much admiration for her.
The kids are still champs.
Oh sure, Moxie still does stuff like she did last night, where she takes off running while laughing hysterically at my scrambles to find her while paying for the wipes at the CVS register (because I’m trying to clean the ‘fix a flat’ explosion in the car from the 108 degree heat here). And sure, the kids seem to time their bathroom visits to where they stagger each other because I wasn’t really paying attention the first time around (and made them all go at the same time!), so I end up escorting them to the bathroom roughly 5 million times a day. And sure there have been some tantrums and Mack still takes about half an hour to decide on what he needs to wear every day (and is a total drama queen over each fold that I did not make over his pants or shirt), BUT OVERALL, the kids have been champs!
That’s the news for today. Over and out.
I missed Grandma so much while I was sitting on that bench, remembering how Grandma was sitting next to me the last time I was there.
She kept calling me “Diana,” (I look a lot like my mom now; I’ll take that as a compliment). She wanted me to fetch her a banana from the toy co-op. I said, “Grandma, it’s not a real banana” – she said she didn’t care, she’d still like to have it. I said I couldn’t give it to her because this was part of the play museum. She shook her head, laughed with those dimples popping, and said, “well, I’ll be… what is this?!”
It’s a world where we pay to have things nice and tidy for our kids, things that smack of learning and education and fair play. It’s not the one where you ran free in Oakland with your cousin and some pennies and watched movies in theatres by your own small selves.
It’s also a world with anatomically correct dolls.
I had gotten a little flustered the last time I was there because Moxie had a blowout in her pullups, Grandma was mad because I was gone (cleaning up Moxie), and she also wanted to go to the bathroom, then I was worried about her in the bathroom alone. I checked on her. Okay. Then Mack had to go, and his was all about poop too. I hadn’t slept much the night before – Grandma needed to get up most of the night – I felt worn at the ends, frazzled, drained, and I didn’t mind it at all because I knew that each moment with Grandma – crazy or not – was a gift.
I am grateful that I felt that.
When I was sitting on the bench last week, I was glad that my memories aren’t laced with any recollections of feeling annoyed with Grandma, or impatient, or anything. I am glad I only remember how much love for her I felt on that day, on every day that I was around her.
My Grandma loved me best.
Oh, okay, maybe she actually didn’t (?), but she always made me feel like I was her favorite, that I was the best thing since sliced bread. There is so much comfort in that. I think more than anything, I want everyone to know what that feels like. To know that there is one person in your world, in your life, who thinks your shit doesn’t stink. Or if your shit does stink, there’s probably some marvelous reason for it stinking, because you are essentially just the most marvelous person, ever. No matter what.
Last week Moxie bolted out of the Discovery Museum, and of course it was a moment in which I wasn’t looking. This little gaggle of concerned mothers came to me as I was downloading something onto the iphone and said, “your daughter just ran out of the door” (which they had to repeat, like 5 times because I couldn’t hear them or read their lips well). I writhed in shame. Bad mom, horrible no-good, tech-obsessed mom.
Moxie was back in (on her own) by the time they were done being concerned with me, and I took her gently by the shoulders and said, “you just can’t run out, honey.” She said, “why?”, I said “because we are in here – you need to stay with me. We are playing inside here, now. ” She said, “ok” but I have no idea how much she actually understood. I asked her if she wanted to leave. She said, “no.” So then I said that if she didn’t want to leave, she needed to stay inside. If she wanted to go, just tell me; we’ll go. Okay? “Okay.”
But I put the phone completely down and away. Just in case.
I was proud of how she played and basically covered every living inch out of every single item there. Puppet show? Check
Kaleidescope? Check. Ball-over-blast-of-air? Check. Bike-powered stoplights? Check. Golf-ball-ramp? Check. She didn’t waste time. She literally played with EVERY SINGLE THING. I can’t say that about anyone else there.
The death of someone loved isn’t just a loss; it’s an absence. It’s the not being there, the physical space that was once occupied by them, now empty. It’s my Grandma’s chair blanket that once made her butt warm, it’s her cat, Hester, that is still so sad, looking everywhere for Grandma’s bright smile and kind, petting hands.
I try not to think of her absence. It sounds really cheesy and all new-agey to say this, but I try and focus on the fact that I lost her in her physical form, but I’ve gained the best damn angel-protector-guardian anyone could ever have. Nobody’s going to watch over me like my Grandma!
Who loved me best, haha!
For those of you who like my kinda-controversial disability-related posts, I have a new one up on Two Thirds of the Planet – “Hey ‘Special Needs Parents’! Where’s the Outrage Over “Me Before You”?”
Catching up right here and now involves a whole lot of stuff like snot coming out of my kids, as well as raspy voices and big, splashy sneezes – the kind that explode right in your face, dousing you with all their germtastic glory.
Keeping Mack and Micah relatively snot-free isn’t that bad, but Moxie?! Oh man. Miss Independent gets down and throws tantrums if I try to wipe her nose for her. She’s got to do it by herself and that means she swipes her nose and rubs the stuff all around so her face becomes a mantle, if you will, of Cruste de Mucus.
I try to accept these things as badges of motherhood and be graceful and nurturing in the face of all this…drip but honestly? The stuff grosses me out and it’s a real struggle. I can’t even handle the snot sucker – Mikey is the sole manipulator of that tubular blessing.
So here we are and it’s Monday morning and it’s glorious outside. Mack’s nursing on me as I type over his head. Moxie is slumped down, crusted. Micah talks to everyone as he engages in his morning craftastic activity (I think he’s building a monster). I’m wondering what we can do that will engage everyone and yet not infect the outside world. I’m not sure if such a thing is even possible.
I want to write something really deep and meaningful for World Down Syndrome Day coming up – this Thursday (the 21st) but I’m not sure I have anything very deep and meaningful in me right now. I’m just trying to keep the snot at bay and not drink as much coffee as I want (- which is far, far more than a nursing mother should, I’ll tell you that!).
I’m also casting a lot of long, lingering looks at my painting that I’m working on. My One True Darling got it all set up for me and I find that’s all I want to do anymore: paint. And I’m reminded of the fact that I only continued blogging to the degree that I have because of the difficulty in painting (– with little kids running around, demanding time, with acrylics drying out quickly, with easels getting knocked over, and with concentration getting shattered). My heart really longs to paint though. I’m finding that even a few brush strokes applied here and there perks me up and sets my world much righter.
So here we are. The bookclub is polling a first book to read now – it might be fun for you to join. Here’s the embedded piece that goodreads encourages me to add!
I’m sorry, you guys. New poll. “Don’t Call Me Inspirational” costs over $60! The kindle version is $12 but I don’t think it’s fair to have only one affordable option (if someone doesn’t have a kindle, they would have to shell out a lot to participate…). Let’s hit the drawing board again. Thanks!
It’s Monday morning. Micah’s now belting out “I’ve Been Working on the Railroad” in his gravelly, sick (and highly off key) little voice. It simultaneously breaks my heart and makes me smile.
Have a wonderful day.
The gods of Sick finally decided to come on down and pay us a visit. I suppose they thought it had been too long or something.
I guess they didn’t want to leave anyone out either – because it’s like they had a party with each and every one of us.
They’ve totally outstayed their welcome.
I’ve even pulled out the repellants on them.
It’s frickin’ high time they listened to me, because let me tell you: I’m one Mean Mama when I pull up my sleeves and whack those Beasties back to Sickdom where they belong.
The past few days.
On the bright side: Tea Collection:
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It wasn’t just the IEP meeting – that was kind of the whipped cream, chocolate sauce and cherry on the sundae that was already built.
I’m really grateful for the water supply there, but my heart is just not in it, overall. It feels like such an effort to connect with people, you have to do things I’m not good at like set up schedules, times and be on time and drive around and find parking and buckle and unbuckle small people into seats that secure them. I completely suck at this stuff.
And I know I’m probably making everything better than it was, but I long for places like where I lived when I was young. Levuka (in Fiji), where “town” was a tiny strip of archaic building 2 miles away, where our neighbors were our best friends and we knew when “Uncle” Adrian on the tiny hill behind us was baking bread because we’d smell it. We could lay out the butter and jam too because he almost always made an extra loaf for us.
I want the small, the intimate.
Where we can dance in the backyard to Donna Summer and Christopher Cross and the kids can be naked and loud and free and I won’t have that nagging worry in the back of my mind about the neighbors.
And in the meantime, I’m fortunate enough to have my mom (– sainted!) who will drive me and the kids up to hang out with my brother, his kids and my grandma who lives with my brother.
I used to hate that. I felt so exposed, walking around.
Now, though, I love it.
I am not sure why.
Cars can veer out just as easily in those big wide streets as they do in the Bay Area, but I can’t shake my feeling of safety.
I miss my One True Darling Man, Mikey terribly but sometimes I just have to do what is going to take me out of that space, you know?
I’m just incredibly lucky that I have the wherewithal and the help – not to mention the place – to go to.
Being in a spot with beauty, space and wonder embedded within it’s very heart is a balm.
I’m letting mine be altered.
Micah came home from “skooWOL” the other day and was talking about his “nemesis”, a boy named something or other. Micah said, “he’s not like us.” I thought, hmmm. “Not like us? What do you mean?” “Oh, you know,” Micah said, “he doesn’t sign.”
“He doesn’t sign?!” I gasped. “No,” said Micah, scrunching his lips right up to his nose in disbelief “and he doesn’t even know what signing IS!”
Now, I know it’s not likely to always be this way, where we live in a region where signing is hip-hoppity cool and most everyone knows what it is and to some extent, engages in it. I know there may very well come a time when Micah doesn’t want to sign or might be embarrassed by it.I know all of this, so I’m thoroughly relishing this moment that he is shocked that someone can’t sign, and even more, “doesn’t even know” what signing is.
We’ve been watching a ton of Signing Time for Moxie. Her signing has shot off – I think she’s easily learned at least 10 signs/week. She gulps it down like Popeye does Spinach. It makes her happy-level bulge; she loves signing. She loves that she’s able to “talk” more. She loves seeing the kids onscreen doing the same thing she’s doing. She turns into a zombie-child when she watches it. She loves the music.
A word about the music.
Mikey thinks that Rachel Coleman missed her calling in life to be a “B-Grade Country Western Singer”. He thinks she looks a smidgen psychotic as she fiercely smiles through each and every song and sings songs about loving and kissing her shoes (if you watch Signing Time, you know what I speak of!). I think he’s really funny and I laugh a lot at his jokes.
But I am secretly annoyed with her for creating such ridiculously catchy and repetitive songs that prance around in my head ALL FREAKING DAY without so much as a by-your-leave. Songs that have me belting out “wash, wash, scrub, scrub, I use soap and water!” Yeah, baby, yeaaaaaaaaaah! – and all the people at Trader Joe’s turn to stare….
Signing in our family seems to be the *it* way to show you are sincere about something. If you mean, it, you sign it. When I’ve had it up to here (like I did at Target yesterday), my hands come up on auto-pilot with STOP, and I think even more than my bellows, it makes the kids truly listen.
I’ve also noticed them signing when they really want something to be heard: Micah will say he’s sorry but then when he’s just flooded with the sincerity of his overwhelming sorriness, he signs it. I’m sorry. And I nod. For some reason, I believe that more, always do.
I suppose that my belief in it carries over for them – that they learn from me and cue in, perk up with their senses alert when they see me signing? I’m not sure.
Moxie talks very little – she says perhaps 7 words, tops. And I honestly couldn’t care less. I’m nowhere that casual about her signing; I care tremendously that she learns, that she applies. I am fierce about making her “say” things rather than grunt/point. And by “say“, I mean “sign” – of course.
Micah makes this easy for me.
He asked for more bread this morning. I didn’t hear him; he signed it (and yes, he also signed “please”!). Moxie saw, heard him saying “Mommy, may I have more bread please” and so signed, “more”
This makes my Mamas-heart very, very proud.
I was kinda-sorta just joking about the previous stuff. I really do love Rachel Coleman – I read her blog (“Strong Enough“) and love her perspective on things. She is Good People and deserves a better audience than me and Mikey