It's not over til it's over

A fairly big aspect of our lives over the past decade has been my mom's declining health. Every time there's an incident or a decline, we need to adjust to a new normal. Some are harder than others. depending on how much we're affected. The last two years have been tough but the last few months have been more stressful than ever before. So terrible that despite her nephrologist telling me that she's still doing fairly well and he doesn't think these are her last six months, my gut has been telling me otherwise. Mostly in the form of nausea and anxiety. To preserve some kind of sanity, something had to give so I've taken a leave of absence from work. I've been off for about a month now.

It's kind of funny. I thought I would be less stressed out to be away from work but I think shit has just gotten more real. And it's a roller coaster kind of experience. Good days and bad ones, constant fluxuation. But the bad days keep getting worse and getting used to each new normal is getting harder and harder. A few weeks ago, my mom could have a conversation. Today she can't string together any words that make sense. Before she could walk with help – I took her out with her walker at the beginning of the month, now she needs two people to practically carry her to the bathroom. She struggles to open her eyes or stay awake for a minute or two. She's not eating.

We've always had a hard relationship. Always. We've just never been on the same page. A lot of the time we really don't even like each other. When I was young I remember finding our family photo with me torn out. That sums up a lot. And I've really resented the fact that somehow, by default, taking care of her has always fallen on me (and Chris). I am definitely the reluctant caregiver, on the verge of a panic attack every time I am in a medical setting.

Based on my symptoms, I am currently experiencing anticipatory grief. Usually it's just sadness and despair. Right now I'm in the anger stage. I send out email updates on my mom every couple weeks to her siblings and mine. I usually do this when I feel things have significantly changed and I feel it's important to keep her family informed. But no one responds to me – or they don't respond as much as I want them to – and they sure as shit don't reach out to her. Well, Jean always responds to me and I have been regularly in touch with Carolyn and Auntie Sharon. My mom wonders aloud why no one is there for her. And most of the time, so do I. It's a burden that I am shouldering entirely on my own. It's not fair, but we all know life isn't fair.

I went for coffee with my boss a couple weeks ago. Knowing the tumultuous relationship my mom and I have, he asked why I'm doing this. And it's something I've thought a lot about. It's because if I'm not there, she's all alone. She's dying all alone. I wouldn't want that to happen to me so I'm doing this so it won't happen to her. It's all I can do.

Finn at five

Finn, you are an amazing little boy. Every single day you amaze me. You are thoughtful and bright, affectionate and curious.

You come home from daycare and school with big issues. You were offended that one kid at daycare would not believe that boys can marry boys and girls can marry girls. Then just yesterday, you said "I learned something at school. Transgender. It's like when you are a boy on the outside but feel like a girl on the inside." Kindergarten is absolutely not how I remember it. You shine on big issues, but you also feel great conflict when you hear something you feel just isn't right. When your teacher told you God created the world, you struggled with it immensely. That is, perhaps, a little too much for a five year old. But you worry about big things. Like me getting old and dying and you having no mom. Or me getting old and not looking like I do now. You don't want to get married but you do want kids. Apparently all girls but mom are not so great.

You are an incredible eater. You will claim hunger five minutes after we finish supper. You sometimes eat four breakfasts. Cereal, then bagels, then cheese and crackers and finally a banana and two oranges. Between you and Lily, you can polish off a whole cheese pizza. You complain about the meat sandwiches at daycare. You are a sugar fiend when we go to Nana's, helping her whittle down her gummy bears and worms. You love tofu and sweet potatoes, but only eat the stems off broccoli. Ketchup is still the condiment of choice for almost everything.

And oh, the love you dish out. To me anyway. You always "out-love" me, loving me to infinity over my billions of universes that I love you. We spend a lot of time cuddling. So much so that you will wake in the middle of the night and say "Cuddle me!" before you can go back to sleep. It could be worse. You also love to accompany me when I go out or if you are not with me, you often FaceTime me when I've gone out. You use Siri to text me and dad and Lily. Though she often gets it wrong, it usually has to do with poop.

You have recently decided you want to be an inventor, or an engineer scientist or a graphic design scientist. This is because last year you got worried that becoming a police officer would be too hard. You constantly asked questions like, "Do you have to write a test to be a police officer? How strong do you have to be?" You have caught on to French - and to school in general - like a boss. You speak a lot of French and sing all the songs. You actually love to sing. We belt out songs spontaneously all the time. Thank god because no one else will sing with me like that as often as I like.

For the first time, in preparation for next year, you and Lily walked home from school together. I watched from the window, waiting. Then I saw you two – holding hands while walking down the sidewalk. You adore Lily so much, but never when me and dad are around. You even "like" dad now, up from "I don't love anyone but you, Mom." But we know you do. Lily takes such good care of you when I'm not there. All she wants to do is kiss and hug you. That's how cute you are. But honestly, who care blame her.