I had an opportunity to spring into action early yesterday morning.
You know, like I'm some kinda goddamn super hero or something.
Thanks Caitlin for texting me at 8 am and asking for a lift.
From Port Angeles to Sequim.
Seriously.
This is the type of thing that's going on in my life that helps me.
I know I'm the logical choice because my family lives between PA and Sequim.
And I know she ain't gonna ask unless she's in need. This woman knows me and the daily struggles my family faces.
I'm not saying you get text me at 8 am and ask me to pick your ass up in Port Angeles and get a ride to Sequim.
Especially when there's snow on the ground.
And you gotta cross 27 bridges to get to where your going. And you've slipped on one of those 27 bridges on black ice and totaled your 4Runner.
Actually, Randy did that. I was the passenger. We were the only vehicle. But he broke the shit outta my first 4Runner. Then he bought me a newer one. Because he's a good egg like that.
Luckily, we didn't go over the McDonald Creek bridge on 101. We are living proof that those cement barricades are really, really fuckin' solid. And, no, it wasn't recent--it was many years ago; pre-children. That's how life is defined now...pre-children : since children; pre-cancer : since cancer.
But, yes, I'll pick up my dear friend and fellow breast cancer survivor who I've known since well before either of us was diagnosed because she needs a ride. Because you know when one of your closest people calls on you early in the morning you know something's going on and she needs help and that she's not fiddle-fartin' around.
Wheels turn because you need to go to Safeway because ultimately, you're Mrs. Claus and need to make sure there's some goddamned milk for Santa. Jesus.
And since you're going to Sequim, you may as well go to Costco because COSTCO.
On the Friday before Christmas.
No part of this was thought out.
But, my dear friend was willing to go to both stores, in two different towns. Twist her arm. Heh.
And then we ended up going to the Safeway in Sequim because I picked her brain and figured out what the hell to eat on Christmas Day because Jesus, this pressure is similar to Thanksgiving and fuck that! I was not into Halloween and at Thanksgiving I had an epiphany...so why not do it in three? The Big Three. Right? Even though we've been eaten the latkes, mmm-hmmm....
Make change. Less pressure. Less stress.
No tree.
Yes, child, Santa will still come. Mrs. Claus is on top of planning the route with the GPS. No, not the elves. They're total minions. Mrs. Claus is in charge. It's cool, she'll see to it that he gets here. Trust me when I tell you Santa gets all the credit. Yes, Mrs. Claus is a Bad Ass.
Less stress. Less pressure. Make change.
In fairness, we have a tree, it's just mounted on the wall. Thanks Pinintrest then YouTube.
Because we live in a small house. It's beautiful and I love it and I'm thankful for it. But I'm tired of displacing our beloved 4-legged child so the tree can be where she sleeps because she's 10 and she deserves better. And the allergies I have from the tree? Done.
But really: stop wrestling and leave the tree alone and we can't even put presents under it because there's no room and Nathan would struggle to keep his hands off of the presents and we need to set him up for success as much as possible but it's a pain in the ass and a lot of work and all the presents are in our bedroom closet and this is super stressful so why in the goddamn are we doing this?
Because at the end of the day, what matters is that we are alive and have each other.
Yes, child, it's hard to feel festive and merry when our friends are hurting and in deep pain like nothing we've ever known. His cancer was different and much more aggressive. Good question; it means "mean." Yes, meaner than mine. Way meaner than Daddy's. Yup. It was just as mean as Pop-pop's.
Well, we can help by being good friends and loving them and offering help. What helped us as a family when we were dealing with our own traumas? Hugs. Yes. And love. Yup. And sure, pray, or think or meditate or light battery operated or full flame candles or whatever it is that you do to bring comfort to yourself as long as it doesn't infringe upon whatever it is that she decides she and her children need. Because she is in charge.
It could be that what helped us helps them. It could be that they need something completely different. I do not have the answers; only she does, and she'll let us know when she's ready.
She's a mom and she's got it but she's blazing a trail nobody wants to blaze and she's got no map, no guide. And even though she's got a bunch of other moms trying to take care of her, and we all want to help but some of us feel frozen because we were so close with them but cancers changed all of it for both of our families and the unspoken could've been that my beautiful friend who needed a lift and who is a survivor and I know all too...takes my breath away....
When I'm sorry isn't adequate.
And neither is Fuck.
Fuck you, you fucking disease. For taking him. From her. From them.
I don't know because I am not in charge, little dude. I know. That's a tough one for me to swallow too, dude. But whenever I am notified of the plan, we'll spring into action. I know you guys are worried about your friends and that you love them, my sweet boys. I hope we can see them soon, too. Yes, I will get in touch with her.
I know honey. I love them a lot too. And I'm sad too. I wish his outcomes were different. I wish the outcomes for their family were different. When Pop-pop died, Grandma said she felt a little relieved because Pop-pop wasn't hurting anymore. I imagine, perhaps they do. But there are some things that are not in anyone's control. Let's be thankful they're not in physical pain anymore. And we can do our best to help them learn to live differently. Very, very differently.
You has a voice and teach others to speak. I do not speak for you; nobody else should either. You are capable. You are strong. You have courage like
nobody I've known. I am thankful for you and our friendship.
All my love always.
xo
We also
Saturday, December 23, 2017
Friday, December 1, 2017
Struggle
It is so hard to sit back and watch you struggle.
I know your struggle is yours.
I know all parents watch their kids struggle.
But your struggle is different.
This morning, after you spent an unusually long time in the bathroom, after a breakfast that was mostly not eaten, after you swallowed the horse-sized bright red gel caps and the rice-sized dab of medical marijuana oil that I give you to reduce your seizures, I watched you struggle to get your socks and shoes on.
I watched as you yelled at and fought with your socks. I watched you start to put your left shoe on the right foot. I corrected you, because you guys were going to be late to school, which would ultimately create more anxiety for all of us.
A split second decision to advise you. To help you. To watch you stop struggling, if even for a moment. Was it the right thing to do? Yes, because you changed the shoe to the other foot. And you didn't freak out about it. That's the catch, isn't it? Whether you'll freak out and start yelling at me and then I start yelling back because I really can't stand being consistently yelled at by you every fucking morning for nearly two weeks. The bully isn't bullying you anymore. Mrs. O is on top of that shit like white on rice. But you kept on about it for damn near a week after she said it was over. I know. I know you're slower to process. But fuck, dude. Stop already. Move. On. It's. Over. Please.
Thanks for letting me help you tighten up the velcro on your shoes and for letting me take your pant leg out of your sock. It's important to me that you look "normal" when you go to school. I mean, you look like any other fifth grader. Any other 11-year-old, who is 125 pounds and 59 inches tall. I've only got 7 pounds and 3 inches on you.
This morning, as I watched you struggle into your fleece and struggle to zip it up, with your well-worn dark green Bite Saber hanging from your neck, I started to silently cry because what will happen to you? Who will look after you? It does not fall to your brother. But it probably will eventually. When you're both grown.
Stop crying. First get them out the door, then sit down and cry. Don't let him see you cry. His anxiety will go sky high. And don't say "sky high" because he thinks it's funny and will start giggling and won't stop and he'll pee his pants. Shit. Is he wearing a pull-up?
I watched you carefully walk, in the pouring rain, down the 10 steps from our deck to the driveway. I watched you, in the darkness of the early morning, as you loaded up in the truck, thankful you have the ability to fasten your own seat belt. The rain was so heavy your brother didn't roll down his window and wave for several minutes like he normally does. I watched from our enormous picture window and waved, like I do every morning, as Daddy drove away. My heart was heavy, as the red taillights disappeared down the driveway and the darkness of the grey day set in, the sound of the rain pounding on the skylights in the kitchen.
Then the tears came. The sobbing. The snot. The blubbering. The sadness. The regret. The guilt. The anger. The fear. The trepidation that one big seizure could eliminate all the progress you made. That too many little seizures are equally terrifying to watch. The constant nagging in the back of my head, and hoping that the "what if..?" never comes to fruition.
Invisible illness. Invisible brain disorders. Invisible struggles.
It's ok, Mom and Dad. I get why you stay away. I get why you don't acknowledge Mom's brain disorder. It's intense. It's easier to ignore shit and hope it just goes away. But it won't. Living with and caring for a person who has a brain disorder is a struggle for everyone on a person's family.
My son struggles with basic things: eating with a fork, writing his name, get his shoes on the correct feet and zipping his fleece up. His main struggle: he'll always be five years old. Developmentally, my son, no matter how old he gets and no matter how long he lives; no matter how big he gets, will always have the brain of a five-year-old child. He may get to six; but I'm not holding my breath. He may end up regressing, which happens sometimes with autistic people. But, it can also happen because some fucking electrical storm in his brain makes it so, and ultimately, a seizure is more likely to happen and cause who knows what. I don't go there. ScareTheHellOuttaMe.com is not a place I choose to go.
Think about that. What would you do if your child was going to be five forever? I recently had a conversation with a community member who was lamenting the fact that she and her husband were going to be empty-nesters soon. I kept my mouth shut, because I really had nothing to contribute to the conversation. We will likely never be empty-nesters. Because you can't let a five-year-old child live alone. Or I can't, anyway. This isn't about me seeking support for him. I know about the resources. The ones that our current president and his fucking cronies are attempting to eliminate. I do not count on those resources to be there.
But it's a struggle. Everyfuckingday is a struggle. And it really hurts my heart.
If I could start again
A million miles away
I would keep myself
I would find a way
"Hurt"
Trent Reznor
1994
I know your struggle is yours.
I know all parents watch their kids struggle.
But your struggle is different.
This morning, after you spent an unusually long time in the bathroom, after a breakfast that was mostly not eaten, after you swallowed the horse-sized bright red gel caps and the rice-sized dab of medical marijuana oil that I give you to reduce your seizures, I watched you struggle to get your socks and shoes on.
I watched as you yelled at and fought with your socks. I watched you start to put your left shoe on the right foot. I corrected you, because you guys were going to be late to school, which would ultimately create more anxiety for all of us.
A split second decision to advise you. To help you. To watch you stop struggling, if even for a moment. Was it the right thing to do? Yes, because you changed the shoe to the other foot. And you didn't freak out about it. That's the catch, isn't it? Whether you'll freak out and start yelling at me and then I start yelling back because I really can't stand being consistently yelled at by you every fucking morning for nearly two weeks. The bully isn't bullying you anymore. Mrs. O is on top of that shit like white on rice. But you kept on about it for damn near a week after she said it was over. I know. I know you're slower to process. But fuck, dude. Stop already. Move. On. It's. Over. Please.
Thanks for letting me help you tighten up the velcro on your shoes and for letting me take your pant leg out of your sock. It's important to me that you look "normal" when you go to school. I mean, you look like any other fifth grader. Any other 11-year-old, who is 125 pounds and 59 inches tall. I've only got 7 pounds and 3 inches on you.
This morning, as I watched you struggle into your fleece and struggle to zip it up, with your well-worn dark green Bite Saber hanging from your neck, I started to silently cry because what will happen to you? Who will look after you? It does not fall to your brother. But it probably will eventually. When you're both grown.
Stop crying. First get them out the door, then sit down and cry. Don't let him see you cry. His anxiety will go sky high. And don't say "sky high" because he thinks it's funny and will start giggling and won't stop and he'll pee his pants. Shit. Is he wearing a pull-up?
I watched you carefully walk, in the pouring rain, down the 10 steps from our deck to the driveway. I watched you, in the darkness of the early morning, as you loaded up in the truck, thankful you have the ability to fasten your own seat belt. The rain was so heavy your brother didn't roll down his window and wave for several minutes like he normally does. I watched from our enormous picture window and waved, like I do every morning, as Daddy drove away. My heart was heavy, as the red taillights disappeared down the driveway and the darkness of the grey day set in, the sound of the rain pounding on the skylights in the kitchen.
Then the tears came. The sobbing. The snot. The blubbering. The sadness. The regret. The guilt. The anger. The fear. The trepidation that one big seizure could eliminate all the progress you made. That too many little seizures are equally terrifying to watch. The constant nagging in the back of my head, and hoping that the "what if..?" never comes to fruition.
Invisible illness. Invisible brain disorders. Invisible struggles.
It's ok, Mom and Dad. I get why you stay away. I get why you don't acknowledge Mom's brain disorder. It's intense. It's easier to ignore shit and hope it just goes away. But it won't. Living with and caring for a person who has a brain disorder is a struggle for everyone on a person's family.
My son struggles with basic things: eating with a fork, writing his name, get his shoes on the correct feet and zipping his fleece up. His main struggle: he'll always be five years old. Developmentally, my son, no matter how old he gets and no matter how long he lives; no matter how big he gets, will always have the brain of a five-year-old child. He may get to six; but I'm not holding my breath. He may end up regressing, which happens sometimes with autistic people. But, it can also happen because some fucking electrical storm in his brain makes it so, and ultimately, a seizure is more likely to happen and cause who knows what. I don't go there. ScareTheHellOuttaMe.com is not a place I choose to go.
Think about that. What would you do if your child was going to be five forever? I recently had a conversation with a community member who was lamenting the fact that she and her husband were going to be empty-nesters soon. I kept my mouth shut, because I really had nothing to contribute to the conversation. We will likely never be empty-nesters. Because you can't let a five-year-old child live alone. Or I can't, anyway. This isn't about me seeking support for him. I know about the resources. The ones that our current president and his fucking cronies are attempting to eliminate. I do not count on those resources to be there.
But it's a struggle. Everyfuckingday is a struggle. And it really hurts my heart.
If I could start again
A million miles away
I would keep myself
I would find a way
"Hurt"
Trent Reznor
1994
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