When I am forcibly reminded me of some of the worst days of my life, the colors saturating the incident are somehow so much more vibrant in memory than in reality. On the day Gabriel was diagnosed, it was the rich chocolate brown I dressed the whole family in, this warm teddy bear hug of a hue. On the day Michael went into Cardiac ICU with a ruptured ulcer, it was the vivid darkness of his hair and beard, so stark against the paleness of his face and the frothy blood on his lips, that I come back to. For Tula's Very Bad Day, it was the purple of her Kickee Pants striped swing dress, the bubblegum pink of the sponge I used to moisten her parched mouth when she was unable to have a drink.
Seven years ago today, Facebook so helpfully recalled, my memory is flooded with green, red, and white.
The green is vibrant, unnatural to any growing, living thing, particularly the sepia-toned aridity of Lubbock. It is her favorite dress, an A-line thrift store find that was homemade with love for another little girl, the fabric carefully chosen with Winnie the Pooh depicted on it. It was too fancy for a day in bed, but she is a fancy kind of girl.
A nearly divine white of freshly washed emergency room sheets, coupled with the smell of saline and alcohol wipes, and it beckons her in until she nearly disappears, until I almost cannot see her, except...
Oh, except that feisty, sweet, unmistakable strawberry hair.
My eyes are fixed on the top of that thick, tangled mess matted with sweat as I back through the doors and call Michael to tell him that our Emerald, our baby girl has Type 1 Diabetes and is fighting for her life. The dramatic little diva that was fine just a couple of hours ago (wasn't she?) was now unconscious and would continue to be so for the next twelve hours or so.
When I have my little bouts of panic built around a time in my life, it is the colors that throb and pulse, bringing the picture to life so I can live afresh the horror. As the terror fades so do the colors, bleeding out into serenity.
My baby girl survived. Both of them did.
All these Weardens are a stubborn, scrappy breed of individuals, refusing to concede in the fight. Honestly, it was that initial tenacity that won Michael my heart since I was reticent to settle down. So far, we have a history of surviving.
It is helpful to me to remember that when I am feeling panicked about health concerns and the future. Michael is sick this week. He has a cough, sore throat, shortness of breath, chest pain, and nausea. Both the flu test and strep test came back negative, but the clinic wants him to wait a week before they do the coronavirus test. Until then, he is supposed to quarantine away from us and wear a mask to prevent spreading whatever he has.
My instincts have been at war with this one. I want to take care of Michael, nurse him back to health, be there with him through his sickness.
The other part of me keeps seeing that strikingly red hair splayed out on the aggressively white hospital bed, feels the sweaty, limp weight of an unconscious preschooler in my arms. Such a unique sensation when compared to the mere wisp of a scant nine-month old in my arm, a ragdoll in a bamboo-cotton lavender dress, begging for a drink because she is so, so thirsty.
With every fiber of my being, I want to prevent that scenario from ever happening again. So it is hard not to see virus McMike as a threat to that. Though we have all been exposed, I still have the urge to dog his footsteps, sanitizing everything he comes into contact with.
The anxiety as this wears on is starting to get to me a bit.
But then....why should it? When I evaluate, we are actually doing well under the circumstances.
Tula is a hog in heaven with her siblings here all the time. At first, she was irked because her great idea of going to visit the "Zoop Keeper" was always met with Mommy telling her "Sorry sweetheart, the zoo is closed today." But she has an inflatable pool "swimming ho!" in the backyard where she can splash and play on the hot afternoons. We get to go on walks and see the pretty flowers that are growing, climb on big rocks that we find. And best of all? Benny and Em-er-uhl and Gayby are all here all day long to play with her!
She had a tele-medicine visit with her endocrinologist last week. Her numbers have been pretty good with the exception of big post-dinner spikes, so we are keeping food logs about what she is eating at dinner and splitting denser carb meals (like bread, pasta, pizza) into two smaller meals for her so as to prevent the spike. Michael and I have kept the girls on a controlled carb regimen since their diagnosis, carefully restricting meals to 60 carbs or less except on special occasions; Tula, who doesn't eat as much, usually gets around 40 carbs at dinner. So it will be more like half a cup of pasta plus veggies and protein at 4 pm and then the other half at 8 pm. Not a big change, but it should help. She's also been staying pretty steady overnight lately, which tells us that her basal is right on track.
We have a pretty set nap schedule that gets her to sleep quickly and with little effort: we sing a song, she gets kisses, we cuddle and read my daily devotional on the Bible app. They have little videos with their verse of the day now; Tula likes "Inty" (N.T. Wright from Oxford University). By the time I get to the prayer portion, she is deeply asleep. The only issue I have encountered is that this has the side effect of making me quite droopy-eyed myself, which is not the mental state you want to be in during quiet time with our Maker.
Mostly, Tula wants to follow Benjamin around the house, doing everything big brother is doing and saying everything big brother is saying.
Ben is coping well, I think. He is understandably stir-crazy. At first he was so excited to be doing homeschooling, but when he realized I would be making him do -all- subjects and not just math, he got considerably less enthusiastic. The excess of energy he has decided to funnel into irritating Emerald and parkouring off my furniture, exasperating but expected eight-year-old boy behavior. He is highly motivated by the occasional soda or screen time, particularly if we get to play together as a family. His games are Battlefront (a Star Wars game) and Sea of Thieves (a pirate game). The one thing currently that brings Emerald and Benjamin peaceably together is playing Roblox and Minecraft. Frankly, I am just glad to have them working together cooperatively so I can get a break from the incessant bickering and snipping they do at one another. To be fair to their case, I'm getting pretty sick of everyone being up in my place all the time, too.
I wish there was more I could say about Benjamin. We are having some behavioral problems. Frustrated outbursts, mostly. He interrupts and explodes at me and Michael because any attention is good attention and boy is he sick of being cooped up all the time. He tells me he has cabin fever. Most of the others are more or less content to watch screens or play games or stay indoors all the time, but he is like a lab puppy--you gotta get him lots of exercise or he is going to tear up your whole house.
One thing that is driving me crazy that he is doing: every day, we have to clean and straighten at least a little. I try and manage my expectations based on what is age appropriate to do, but I have never seen a kid more resistant to working as he is. You have to be in there and help constantly and give frequent praise and verbal prompts to get him to keep going. If you just stand in there, he has a complete meltdown and cries and angry outbursts and doing practically nothing until you leave. If you don't watch him at all, he hastily stuffs everything in the nearest closet, bin, or drawer, stuffs what is left under the furniture and calls it a day. About once a week I have to go into his room and empty everything out because I have to find things that have gone missing--chances are if you cannot find it, it is somewhere in Ben's room stuck in a bucket.
He responds well to incentives. I'll offer him sweets, candy bars or ice cream, sodas, screen time, etc. But if it is edible, he always asks if he can split it with his sister, a scenario that Emerald takes full advantage of, allowing him to do all the work while she reaps half the reward. Of course when she wins, the sharing is not reciprocated. But it is a system that seems to work for them and I will not dissuade them.
To prevent this post going too long, I will end by talking about Emerald and leave me and Michael for next time.
Emerald is...thriving.
It is hard to reconcile the image of that defiant and broken little girl in DKA seven years ago with the tall, beautiful, capable young woman that I see now. This kid was made to rise to the occasion. She loves doing school from home, having all of her classes online and at her pace. She is going out of her way to be helpful to me and remembering to be polite most of the time. Because she has a phone, she can call or text or FaceTime with her friends, so she doesn't feel like she is missing out too much on seeing them (though she does get a little blue now and again for lack of proper socialization). Honestly, I am surprised at how mature she is and I have to make sure she is getting lots of opportunities to be a kid and relax and have fun because she is only 12. (Her dressing up as Harry Potter is a pretty good reminder.)
She complains a lot of stomachaches that I am trying to keep an eye on--I don't know if it is stress or hormones or growing pains or anxiety or diabetes or dehydration or any number of things, but I have been trying to keep note and see if I can source a trigger. She still sees her counselor every other week through telemedicine. Last week she also met with the endo; her blood sugars are actually pretty good, about half the time in range, but we checked her bolus rate and realized it was set incorrectly--once we adjusted it to 1 for every 10 carbs instead of 1 for every 12, I think we are going to see those numbers improve. The one big sticking point for her in all of this has been that I get her up every morning at 8 (I know--so early! The inhumanity!) instead of letting her sleep in. I told her that it was a bummer but she had to do it because she has to check her sugar, so sleeping in really isn't a feasible option for her.
I have set up the shelves in the kitchen so that the kids can get their own breakfast from approved selections; that added freedom has made a big difference for them.
The last big news for Emerald is that she got a kitten. A friend of mine was looking for a home for this sweet little grey tabby cat. I had been hesitant to get a new cat because mine boys are old and don't take kindly to strangers, but of all things, an episode of "Cheers" changed my mind. Diane had lost her childhood cat, Elizabeth, and was recounting how important and special a pet can be during those formative years. I didn't want Emerald to miss out on that experience because I had my own pets. So I asked her if she would be interested in getting a kitty.
She lit up as I showed her the pictures, whispering "I would name her Piper..."
A few hours later, we were bringing her home.
I had nearly forgotten how feisty kittens could be. Oscar spends most of his days laying in the dirt in the sun, listening to me read to him from Pablo Neruda's "Memoirs"; Remy lays in bed until he wants a bit of excitement by relocating to the couch for a short period of time. They are basically purring potatoes with faces.
Not Piper, though. She is a pouncing, climbing, growling, hissing, darting, rolling sentient lint. She adores Michael and hates my stupid face because I put the nail caps on her.
Emerald could not be more in love.
As uncertain as I was, Emerald's reaction told me I made the right decision. Her outlook on life, thinking beyond herself to care for another living being, has improved the quality of her life so greatly. She hasn't said "I hate diabetes" or had an outburst in quite a while. She is happier than I have seen her in a long time.
I wanted to say thank you from the bottom of my heart for the outpouring of love, support, prayers, and food since my last post. It is touching and overwhelming to know that people even want to read my rambling nonsense about our weird little family, and more so that it resonates with people. So often, human struggles can feel so lonely, perhaps never more so than during a global pandemic. This week, reading comments and encouraging texts, hearing uplifting voice and seeing friendly faces has done so much for our spirits.
Thank you all.
Lots of love from all the Weardens
--Andie
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