Expletive filled post

I was going to write about Morgan's EEG today.

Today, I was going to say, "To hell with this shit! I'm going to go buy pants. The boys need pants. I need pants. I'm their Mom. I'm going to buy the fucking pants."

And then I woke up and rediscovered that I'm still me. I'm still in pain. A lot of pain. So much fucking pain I can barely see straight unless I'm on enough Vicodin and Bentyl to render me to my couch for most of the day so that it wears off and I'm able to parent when my friend brings the kids home. And no, I don't get messed up. I only take enough to take the edge off. I hate being stoned, okay? Save any criticisms about pain killers use for someone who gives a shit today.

It's two weeks (nearly) into this crap and I'm so sick of being sick or whatever you call this. I'm done. I hate this. I feel like throwing a temper tantrum. Or screaming (which I just did, in my shower, when I fell over trying to shave my legs because of a muscle spasm. Stupid shower. Stupid legs.).

I just want to know, what the hell did I do to get myself into this? I know, I know... God's will. Well, you know what? I'm pretty fucking angry with God right now. Don't hate me for saying that. I feel like it's my right.

I have had moments stolen from me in the past several years because of my health being crappy. Moments like missing family excursions. Moments like field trips. Moments like hugging my kids. Or picking them up because of the abdominal pain from endo and adenomyosis. And then I get to add in RA and possible lupus (because my asshat doctor thinks the jury is out on this one, once again. Also, I'm looking for a new doctor).

This is not how I pictured parenthood. I never dreamed that I would miss out on things because of  me. That I would tell my husband I need him to take over, not because I've had a rough day due to autism, but because I've had a rough day because of me. 

I can't outrun my own body. How unfucking fair is that? I stay short tempered because of pain levels. I hate the medications which are essentially poison and are highly addictive, but sometimes the only damned things that work. And honestly, I don't even use the damned things until I'm in a situation like this. They scare me too badly.

I hate my body, so much. I hate having moments, chunks of time, stolen from me. I'll never get those back. I miss being spontaneous. I miss the old me. The adrenaline junkie who sailed. Who said, "Hell yes!" to life. Who skinny dipped at night around a coral reef in Mexico because "why not?"

I barely recognize this woman now.

This is temporary. I know that I'm usually not this morose, this pessimistic. I know that tomorrow is a new day. Tomorrow, I might have my funny back.

But dammit, I just wanted to get into my car, drive the mile down the road, and buy some fucking pants.

Asking for help

One of the hardest things for me to do, other than admit I'm wrong, is to ask for help. I hate doing this.

For me, admitting I need help is to acknowledge that I am failing to control, accomplish, or figure something out. I feel like I'm giving up.

Admitting I need help is akin to me crying. For me, both are signs that I'm cracking and have weaknesses which can be used against me. Silly, isn't it? There isn't any shame in either of those things. And yet, here I am.. being ashamed that I have been crying daily since last Sunday from both pain and worry.

I have no qualms comforting someone else when they cry. I am usually the first to jump in and help those in need. However, when it comes to me, I feel as though I am failing myself and, consequently, failing everyone else around me because I cannot do it on my own.

This is such a ridiculous thought process.

After asking some of my friends (all special needs moms), I found that I'm not the only one to feel this way, which made me feel less crazy.

Among the responses, I was told that they don't ask for help for fear of looking weak, incapable, being gossiped about, and the thought that no one can really do it like they can. And you know what? I can relate to every single response.

There's the reliability factor. Oftentimes, someone will say they will help and then not follow through. As a special needs parent (or, I suppose, any parent), this is a major issue. What if you're needing help watching special needs child #1 while you take special needs child #2 to the doctor and your respite worker or sitter cancels? Then you're screwed. If this happens even more than one time, you develop trust issues.

Avoiding pity is a big factor when not asking for assistance. We don't want your pity. We know when we're being pitied. It isn't pleasant, to say the least. And we know when there is condescension. We know when people see watching our children as a chore, and that hurts like hell.

For several of us, it has been drilled into our heads that the only people we can rely on are ourselves. Being taught independence is wonderful, but at what cost? When you're breaking down and needing to reach out for help, how do you go about that?

Trust seems to be the biggest key with all of us. How do we trust someone to help us? Trust that this person will do a job well enough that it's even worth us swallowing our pride and reaching out and asking for help? I know that, in the past, I've asked people for help and they've basically watched television while I did my everyday chores, chased kids down, and wound up more exhausted than I was when I started. I was asking for help, not to babysit someone else.

Also, who can we trust with our children? I know I can count on one hand the number of people I can trust to watch my boys.

We shouldn't be afraid to ask for help. 

We shouldn't fear recriminations for doing so. 

We shouldn't feel ashamed for needing help. 

We should follow the policy of "love thy neighbor" enough to want to help when we see someone in need.

We should, as human beings, not be afraid to ask for help. When we're at our breaking points, there should be no shame in asking. And yet, every time I've asked for help or received it in the past week, I've both thanked people profusely and then apologized to them. I feel shame in being "needy."

I've been messaged by people all over the world since Friday's post, asking how they could help my boys, my husband, and me. I've been told that I'm brave for speaking up and asking for help, but I'm not. I'm asking for something for my children, not myself. I can't stand asking for favors for me. All I might have done is be honest about feeling so steeped in my own pain that I can't do for my children what I normally do. I took a chance. That's all.

Asking for help shouldn't be this hard, but it is. I always feel like I'm failing myself and my family when I ask for it. It just shouldn't be this way.

If you see someone in need, someone struggling, or someone with their hands full, ask if you can lend a hand. Should they say "no," please assure them (and please mean this), that you are there for them should they need help.

Just the offer means more than you know, especially if they are a mom like me.


Contributors:
The Domestic Goddess
Jo Ashline-A Sweet Dose of Truth- The Blog
My Winter Butterflies
My Whac-A-Mole Life
Kelly, Military Special Needs Network
Pancakes Gone Awry
Jennyalice
Beyond the Dryer Vent

When Nightmares are Reality

I had a dream that, at first, was so real, I nearly believed it to be true. We were at the beach. I was healthy, playing with the kids, running around, laughing, free of pain and everyone was smiling. My mind then whispered, "This is a lie. You need to wake up." In the dream, a tidal wave filled with pain washed over me. It tore away the happy moment, the laughter, and the smiles. Then everything went black, cold, and I was in gut wrenching pain.

I woke up drenched in sweat and found that the tidal wave was real. I was in pain, a lot of pain. And that pain was washing over me like a tsunami.

That dream is my reality.

Dreams are, very rarely, reality. Unless they're nightmares.

I keep hoping and praying that this is all in my head.  That this is just a nightmare. That this is psychosomatic, that this really isn't happening. 

But I know it is real. 

It is happening.

I am not making this up in my head.

I'm certainly not dreaming it. 

Illness of any sort will have an effect on any person and any family. In an autism family, like mine, I think it's harder. We already feel like we've been running a marathon for years that is never ending. The finish line, as soon as it's in view, recedes back into the distance (thanks, regression, you're an asshole). Throw some illness in there and all sorts of things pop up. Like Morgan perservating on the idea of me dying, and him scratching his head (new stim) until it bleeds. Then Bay had a potty accident at school for the first time the other day and who has been exceptionally sensitive lately. 

They are both terrified and I can't blame them. Their mom isn't their usual mom right now.

My biggest fear is not being able to take care of my children.

When we noticed autism in Morgan, one of the first things I remembered thinking is, "I can't die. I can never die because no one will be able to take care of him the way I do." I find this sentiment to be true for a lot of special needs families. I try not to think about it, but it's always there. 

That dream was easy to interpret for me. This pain washes over me in waves, stealing moments that should be, by all rights, mine to enjoy. It knocks me down, tears everything apart, and even knocks me out. It's drowning me. 

This is scary. 

I am trying to be so damn brave in front of the kids. To not break down. But that is incredibly hard when I can't escape my own body.

*Editor's note... I promise sometime soon I will get back to talking about autism. I swear. It's just that right now, this is what is going on in our life as a family and it's the vortex that sucks everything in. This blog is also my place to vent. I won't make apologies for that. 

A favor, please

Dear Readers,

I'm not looking forward to this next month. In fact, I'm dreading it.

In the next week, I will have to take Morgan to the neurologist to begin testing for seizure activity and then, on Friday, I have my consult for my surgery for removing endometriosis from my bowels.

Fun stuff, huh?

I always say that when one shoe drops, get ready for the next one... because God knows, it will hit. But I'm kind of a pessimist.

I know that insurance will not cover the full cost of my surgery. Our insurance is just plain crappy like that. We have a deductible to meet and it's high. To put just our drug plan into perspective, each month, I spend $97.00 on one drug, just one, and that's for me.

You can't see the pillow & heating pad separating me from my loves

The best things about the month of October are Morgan's birthday and Halloween. I love, love, love planning parties, but this year, I know, will be different. I will be recuperating from surgery. I might not be my "normal" self. With the OOP (out of pocket) expenses, things will be tight. Also, this kid (and his brother, to be honest, who isn't handling things well at all), needs cheering up from dealing with his mom being ill.

Even at my best right now, I'm limited on what I can do. I cannot stand for long periods of time because I will double over with excruciating pain and pass out. I vomit- a lot. I cannot drive right now because I never know when I will pass out. I cannot do all of the 1,001 things I normally do.

We're cuddling a lot, but I cannot stand to have them touch me because the pain is that intense. It's like childbirth, but worse, because it never ends.

They are witnessing me pass out, vomit, and/or scream from sheer pain, even when I try to hide it from them. This is not something a child should ever see. Ever. They are worried and it shows.

We need some cheer, y'all. 

So, I'm going out on a huge limb here. I'm doing something that I would never think to do in a million years.

People keep asking me, virtually, how can they help? I keep mulling this over and this is the only thing I can come up with. I'm asking that each person who reads this blog send Morgan a card, if you can. You can send a present, if you want, but a card would rock his socks off.

Please, help me cheer my kid(s) up. Help me make Morgan's birthday extra special. He knows that I write this blog about him and our family. He loves mail, in any form. He loves postcards from different places, cards, packages, etc.

Bay does, too. I'm including him in this because, frankly, it's confusing as hell for his five year old brain to process his mommy being in this much pain and passing out from it. Also, sibling rivalry isn't pretty.

Messages posted to my Facebook wall are great, too.

Morgan's birthday is in the third week of October. I'm hesitant to post his actual birth date until the actual day because of privacy issues. I feel like I'm already baring my soul and pride in this post and blog so much, so some things should be kept private until they cannot.

Should you choose to send something to my son(s), here is how:

You may mail letters, postcards, cards, or packages to

Morgan

c/o Thomas Cash

Laborde Products

74257 Hwy 25

Covington, LA 70435

Morgan loves Thomas the Tank Engine (obviously, there are whole posts about this) anything. There is a new movie out called "King of the Rails" which he is incredibly excited about and there is a ton of paraphernalia surrounding it. He also likes Mario Kart, books on trains, Clifford the Big Red Dog, the ocean, reefs, and shells. 

If you're interested in sending something to cheer up Bay, he loves Legos sets, Skylanders, art supplies, books on anything (especially level 1-2 readers), and Minecraft. 

From the bottom of this mom's heart, thank you for the love and support that has continued to pour forth to me and my family. If anyone every tells you that online friends aren't real, they're lying. I've had more people check in on me to give me a laugh or offer an ear this week than I ever thought possible. 

Love,

Jessi