The worst of the immediate danger has passed, but the trauma and repercussions linger on. This is her life now. I get up in the middle of the night to make sure she hasn’t crashed, check her blood sugar. We poke her itty bitty pebble toes five or more times a day, more for ketones. There isn’t enough real estate on those little digits so there are cuts upon half-healed cuts. She takes injections of two types of insulin in her squishy baby tummy, the back of her chubby little thighs. We have begun the delicate tightrope act for her that we have walked for years now with Emerald.
I’m so tired.
At least partially from the lack of sleep. For the foreseeable future, I’ll still need to check her midway through the night. Mostly she sleeps through it; sometimes she wakes up and has difficulty settling herself back down.
Another larger part is likely depression. Good old case of feeling sorry for myself.
I figure everybody feels this way. Like every time you find your footing, something else knocks you back down. When I am in an optimistic mood, I appreciate the chance to catch my breath, to stand on solid ground. It isn’t one bad thing happening one right after the other. Gabe was diagnosed in 2011, Emerald in 2013, Tula in 2017. Each time we were hit, we had a chance to recover, adjust to our new normal, before something else was layered in. It is a kindness.
Hard to always keep that mind set, though, and sometimes I get mopey. Because the truth is, it is unacceptable. It is completely not okay that Tula and Emerald have to deal with this. It is not okay that it is something else our family has to handle. It’s not okay how scary and awful and horrible it is.
I am not okay with this.
And that’s okay.
We can feel however this situation makes us feel. It is a sucky situation and we don’t have to be happy or put on a brave face about it. And whether or not we like it, it is our reality now and we do have to cope with it.
In Marvel comics, there is this group called Damage Control that comes in after superheroes have wrecked the place fighting bad guys and cleans everything up. That feels like my full time job. I am just trying to mitigate damage.
To that end, I have contacted the school counselor for Emerald and Benjamin and talked about how I can best emotionally support them through this. They seem to be taking it fine; I am probably overthinking. I just want to do right by them. Having someone to talk to could help. I, too, have sought counseling. Her assignment for me this week was to identify things I can do to “satisfy my spirit”, to make sure I am taking care of myself. Can’t take care of anyone else if my needs haven’t been met and all that.
Every day, I have two lists. Lists give me a great amount of comfort because it makes it feel like I have a bit more control and that I can make it better. The thing with mental illness is that it becomes about maintenance, just making it through another day and into the next one.
The first list is things I have to remember to do for myself--eat meals, drink water, take meds, change clothes.
The kids, it is easy. It is not often I forget to administer Gabriel’s medicine or check a blood sugar or administer a shot for the girls. We are at every doctor’s appointment, often 15 minutes early because I want the kids to learn to be respectful of other people’s time. Regardless of our circumstances, the children are my priority and their needs are always met. It isn’t uncommon for Michael to come home at the end of the day to find that I have forgotten to eat or change out of clothes that were peed on, dizzy and depleted.
That list is the bare minimum I have to accomplish every day. Some days are better than others. The other list is things that make me happy.
It is about moments. Not a whole day or an hour, just…moments to get me through till the next moment. To remind myself that I am indeed a person, apart from Michael’s wife or the kids’ Mom. I have my own interests, things that I like just for no other reason than because I find them enjoyable.
When I’m scraping the bottom of my reserves and have nothing left to give anyone, I pick something from the second list—coffee with Amber, going for a run, laying in a warm spot in the grass in the sun.
So here’s to moments. Here’s to brighter days and stable sugars and sure footing. Here’s to making it through.
--Andie
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