Friday, April 17, 2020

Special needs quarantine.

Words have always come easy for me. I sit down, close my eyes, and just type. All the words from my always wanting to write mind just flow. Throughout the day, my mind is always “writing” – always, it is impossible for me to turn off. So, when I sit at the end of the day to let it out and I can’t, it worries me, and I know takes a toll on my mental health.

That is where I am at though. It is where I have been for the past 6 or 8 weeks. There is so much I have started to write and started to say but stopped. I’ve written and re-written the same thing over and over and over and it just isn’t right, so I stop without finishing. Because of this, my mind just endlessly spins.

I think today though, the frustration in Parker and the inability to give him what he needs was just enough to push my emotions enough to let go and write. I’ve been holding them in as much as I can, which isn’t saying much – as I cry at the drop of a hat – but I am doing my best. It is so hard to be so strong every day in the best of times and nearly impossible right now. I’m not sure which one of us I need to write more about at this moment or if it is just a twisted combination of us. Again, unlike me, my writing is always so clear for me.

Parker has always lived in a world that is upside down. He’s struggled to fit into “our world”, his is one of routine, familiar people and things, and consistency. “Our world” is too loud, too chaotic, too much of just everything. We’ve been able to give him both what he needs to merge his world with ours through consistency and routine and also the tools to help it be a bit more bearable, like his headphones. We had a “normal” in our very abnormal world, but it was ours and we rocked it.

And then COVID-19. I watched it make it’s way across countries. I saw what my friends across the world were going through. I slowly stocked up on Parker’s favorite things and added to what was in the freezer. It was incredibly clear it was coming and all I could do was brace for it.

I love having my kids home with me, that is no secret. I’ve always been most content when they are here under my roof. I don’t turn down time with them, I’m happy to keep them when their dad has something come up, I’m better when they are here. I’m also a homebody, so, this whole not leaving my house and not having to be social is kinda right up my ally. Except it also isn’t.

Parker’s life is so upside down right now and I can’t fix it. Do you even know how hard that is for me? I can’t fix it. I know what he needs, I know what would make it better and I can’t make it happen. Instead, each passing day my inability to meet that one need makes his life so much worse and it is crushing me.

He needs an end date. A date to mark on the calendar when his life will go back to his normal. I know, we all do, but I’ve always been able to give him this. Concrete days to circle on the calendar to ease his mind about when and what will be happening. Instead, our calendar just keeps getting more empty and I can’t tell him when that will change or how it will change.

His routine is gone and he wants it back. It’s crippling to him to have it this interrupted. Our days are pretty much run by him at this point because the battle I’m picking is survival. That’s it. My only objective is for us to survive. Any regression that happens, I can fix later. Any habits that sneak back in, I’ll take care of at t later date. Right now, we just need to survive and for that to happen, I have to give in.

I can’t give him the routine he needs. I can’t give him the people he wants to see (in person, we do a ton of video chatting though). I can’t give him literally 90% of what he wants right now. So I give him me and lately, even that isn’t enough.

Our days are exhausting and we aren’t even doing anything. We wake up before 7 and go through our routine: feed the cats, take our meds, make our to-do lists for the day, tv, school work, wake up Allison, eat lunch, watch TV, call family and friends, play card games, eat supper and go to bed. That doesn’t seem exhausting except throughout the day, I’m not allowed to leave his sight. At all.

We are glued together. If I get up to leave the room – he panics. Where am I going? What am I doing? Why am I doing it? A flood of questions that are not asked of me but yelled at me, even though I’m only a foot or two away. When I leave the room, he follows. I go to the bathroom, he stands outside the door, talking the entire time, mostly telling me to hurry up.

He has my phone. He gets incredibly upset if I even attempt to open my computer to work. I can’t talk on the phone, send a text, or respond to an email without doing so over his yelling and frustration.

He yells … a lot, all day. Everything is “stupid” the stupid virus, the stupid food, the stupid weather, the stupid car rides that he doesn’t want to take. His stupid mom. I hear pretty much all of it through the course of the day, I’m stupid, an idiot, a jerk, and on his really rough moments, I’m a bitch.

And I can’t fix it.

He’s frustrated. He’s frustrated that we can’t go to the store, we can’t go see our family or friends, we can’t go to school, we can’t go to Special Olympics, we can’t basically anything at the moment. And I have no way to say when we can again.

He can't watch his Cubbies. He *could* watch old games but that isn't what he wants. He wants new games where he can follow along on his ESPN app. He wants his Cubbies back. I can't even tell him when that may be. He tells me each day who they were supposed to be playing that day.

He’s isolated. His friends rarely answer calls or texts. When we do video chat, he doesn’t want to talk – he simply wants to SEE the people in his life and hear them. He does so with his headphones on while watching Power Rangers but it helps, it helps him so very much.

And lately, getting increasingly more upsetting each day – he has a meltdown over his upcoming birthday.

We’ve been talking about his 21st birthday for months. MONTHS. He’s been so excited. We were going to go big, hoping to get all of his friends from high school together, along with friends from the years since his class graduated that are an important part of his life. He has been so excited. And now we can’t and he’s pissed… at me.

I’m the one that isn’t scheduling the party. I’m not calling the Y or the bowling alley or making the plans. I’m not sending invitations or making a guest list. I’m not… because I can’t. And, while he’s grasped a lot with this current situation and dealt with it the best he can – he is not at all grasping why his birthday party cannot happen.

“My birthday isn’t canceled” he will tell me, “I still have my birthday. I be 21” he will repeat over and over. And yes, that is true. It will, however, just be the 3 of us and that is not at all how he wants to spend his 21st birthday.

I’ve talked about how we can do a big video call with everyone – he hates the idea.
I’ve talked about how we can have friends drive by and honk – he hates the idea.
I’ve talked about how we can have a party in June or July or August – whenever we are able to have a party again. That one he really can’t wrap his mind around… “it won’t be my birthday then.”

Don’t get me wrong, I’m still going to plan those things. He may hate them and he may hate me for them – or he will love them. I really don’t know at this point but I have to at least try.

I’m just so heartbroken and sad for him that I can’t fix any of this.
I’m sorry I can’t tell him when this will be over.
I’m sorry I can’t let him be with people he loves and craves to see right now.
I’m sorry I can’t give him the party he has been waiting for.
I’m sorry we can’t just leave and grab something from the store.
I’m sorry we can’t go to the movies.
I’m sorry everything is closed.
I’m so very sorry I can’t fix it.
I’m sorry it is still getting worse.
I’m sorry I can’t make it easier to understand.

We’ve been home so long, I can’t even tell you when we last really left the house. We’ve taken a couple of drives but we really aren’t leaving. Allison’s immune system is non-existent. Between the infusion to remove her B-Cells and the chemotherapy drugs she takes, it simply isn’t there. This virus would be deadly to her and we all know it. Parker’s communication is limited, he can’t tell us when he is sick, he can’t tell us how he feels, we wouldn’t know until he was incredibly sick that he wasn’t feeling well. That’s a lot of risk that we are not willing to take. So we stay home.

Scott, Jen, and our friends will pick up groceries and medications we need and leave them on our porch. I go through and sanitize each item before it goes to the kitchen. On days that I feel fine and normal, that goes immediately out the window as I’m wiping down a box of Cheerios with a bleach wipe before letting my children touch it.

Fear and panic control more of my mind than they should, and I hear from people all of the time how I shouldn’t let that happen. Awesome. That makes me feel better right away. A legitimate feeling and emotion I need to process I’m told is wrong and that I’m wrong for having them. You know, because they have a child or children who is extremely high risk… oh yeah, they don’t.

There is a difference in acknowledging and feeling an emotion to work your way through it and letting it control you. It can be a damn fine line but you have to let people feel. You have to acknowledge real emotions and let them experience them. It is the only way to the other side.

I stay up with Allison in the evenings, she is my night owl. We often go to bed between 1 – 2 am but this is our time, our time to catch up, our time to talk, our time to play games, watch a movie or just “be” in the moment together. I cherish these moments.

When I do sleep, it is in short spurts. Parker is up 3 or 4 times a night. My mind races. I know I need sleep but needing it and getting it are not the same.

My tank is on empty.

I’m a little bit jealous of people who leave their homes for work, or the store, or to take a walk because that normalcy in this time of uncertainty has to be nice. You see other people, in person. Not everyone is getting that right now. And I feel guilty for having that bit of jealousy.

I feel guilty that I get all of this time with my kids and other people who would love to have a day or even an hour with them can’t have it at the moment. It hurts me to know how much they are missing out on and… what if something happens to them and we did all of this and they missed so much and my kids don’t have any more time to be with them? That one really cuts deep.

I know this isn’t forever, I know we will do everything we are supposed to and we will get – at some point – our lives back. I know that will happen. It doesn’t always make each day easier.

We’ve had to make some incredibly hard decisions during all of this. I know they were the right ones but it doesn’t take away any of the guilt or make it any easier. The right decisions are often the hardest.

Don’t get me wrong – not every moment of our day is rough. We have so many laughs and so many moments that I want to hold onto forever. Moments of togetherness that can’t be replaced. We’ve been silly and creative and man, have we laughed! Those moments happen every single day. They are the moments I hold onto when the day ends and the ones I wait for through the challenging parts of our day. We send cards out every day and it is a highlight of our day to pick out who they are going to, who gets what card and then signing, addressing and stamping them. We know this brings a smile to others and it is so important to us.

If I could make a request or two… ok, 2 maybe 3… or 4 or 5...

1. Check on your friends who are parents of special needs kids. They are isolated. They likely aren’t having happy hour zoom dates with groups of friends. They likely aren’t leaving the house. They likely aren’t sleeping or eating or exercising like they should. They are likely worried about the health of their children. They are likely worried about therapies not happening and how to get their child to do even 15 minutes of schoolwork at home without it ruining everyone’s day. They are likely in need of you, especially the single moms and dads. Just let them know you are there.

2. Please don’t tell others how to feel or that they are wrong for feeling the way they do. We all need our feelings validated.

3. Sometimes people just need to vent. They just need to get things off their chest. Let them. Without telling them what and how they should be doing something, just let them vent. Odds are, whatever you are about to suggest they are either already doing but didn’t mention or they can’t do and don’t want to explain the why behind it. Supportive, positive words go a long way.

4. Take the time, every day, to tell people you love them. If this has taught us anything, it is that nothing in life is promised. We don’t know what tomorrow will bring, or if it will come at all. Say I love you now, to your family, to your friends, to your kids, to your pets, to anyone who needs to hear it.

5. Be kinder, more compassionate, more understanding and have empathy. This is missing from our world. We can change that.

Check-in on each other. We all need that right now. To my special needs families out there… I see you, I feel you, I hear you, I hurt for you, I am you. I understand. You are so incredibly strong and have proven this time and time again, I know you will now, too. Today may be rough but tomorrow is a new day.

So, this concludes the most all over the place blog I’ve ever written, it was a bit of a shitshow but I do feel a bit better now, at least well enough to sleep for a few hours. 😊

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