A Mommy Blog About Raising Men, Not Boys.

Wednesday, June 07, 2017

Hobbit Adjustments

If you know me at all in life, you'll know that "popping" knuckles or joints of any sort makes me almost physically ill. If it happens to me I feel sick - I can't STAND it. If YOU do it I feel a wave of nausea just from the sound of your joints. It literally makes me sick, not figuratively. I cannot stand it.

Imagine my horror when, at physical therapy yesterday, as my hobbit of a therapist is trying to get me to do a yoga move and I can't do it to his satisfaction he says "Your back and hips are all compacted too tightly, I'm going to give you an adjustment."

I protested, at which point he reminded me he's not a whack job, he's a professional and he promised it would be ok. He rolled up a towel and put it behind my back, had me lace my fingers behind my neck (Like I'm off for an execution I tell you) and somehow this TINY HOBBIT OF A PERSON reaches up, grabs my wrists and lifts me off the table.

An explosion took place in my back as well as a loud multiple popping sound. It didn't hurt - instead, to quote my friend Allison - IT WAS LIKE I COULD BREATHE AGAIN. I didn't know I couldn't breathe but there suddenly was this WEIRD relief I could not find a way to comprehend.

We went back to yoga, which is a lot of my physical therapy now, and at the end I was rubbing my head, some how having gotten a headache in the process. He informed me I had been straining my neck when doing Cobra and another move, and that it was creating tension. Then he came over and once again put his hands on my spine - and did magic. CRACK CRACK CRACK BLAM headache was gone. In fact, it was like it poofed away inside my brain.

Magic I tell you.
So I'm trying to heal. I'm trying to having this pain stop and get back to being able to move normally and it's coming along but not quickly. I spend a lot of time just eating ibuprofen and keeping going. This is actually helping - just not very fast.

But now I want another adjustment. That was ridiculous.

Saturday, April 22, 2017

Idiopathic Just Means They Don't Know WTF

I got my diagnosis from my awesomesauce new doctor and it was sort of like GOOD NEWS AND BAD NEWS.
Bad news, Chronic Idiopathic Uticaria is the reason I'm constantly breaking out with hives.  It's kind of like well you've got this thing and we know some things that make it worse but not EXACTLY why your skin cells are acting like this.
It's a skin condition not an allergy yadda yadda yadda but things you ARE allergic to can make it worse yadda yadda yadda yadda omg DAMMIT.

The good news, she made a switch up of antihistamines and my regimen and VOILA - it's not perfect but DAMMIT it's better. I'm going from pretty much an all day non-stop festival of breakouts on my skin to a few flare ups a day.

I'll take it.

I'm fighting through the tireds and making it work. It's hard to take antihistamines 3 times a day and maintain an active lifestyle, hell it's hard to just freaking get my ass out of bed. But I'm pushing to make it happen. Allegedly these breakouts will stop.

I'm looking forward to that.

Monday, April 17, 2017

I'm Fine This Is Fine

I've been eliminating various things in a half assed attempt to figure out what I'm allergic to prior to going to the doctor. I'm not sure why, possibly I was going to say "I was having all these hives but I eliminated dairy and now I'm cured. I think YOU owe ME some money."

I mostly eliminated dairy, I quit drinking almond milk. I was actually doing pretty well over two days and then.....ERUPTION.

It's been suggested to me that it's stress. I can attest that sometimes, just sometimes, when I'm stressing the eruptions do flare. I reject this diagnosis.
To accept it would mean in some way my body is telling me I can't do things and I'm frankly not having that. I'm in the "doing things" phase. My stress isn't more than it's been. My stress is equi-stress to any other stress the past few years. In fact it might be less.

I say this with arms and hands and back that are literally ON FIRE while I wait for this fargin benadryl to kick in.

No I reject that it's stress. I want a pill to take or a food to eliminate (please don't let it be dairy) and then, THEN I will be fine and this nonsense will stop. I'm holding tight to that idea.

Also, to this image because it looks pretty awesome.
I'm positive my life is that chill all the time. Stress? What stress...

Sunday, April 16, 2017

The One Where I Overschedule Our Day

You might wonder how many things can a family with four kids do in the course of one day. A good answer is probably one, considering the fact that we have two special little guys who need a lot more help than so called "typical" children. In typical ME fashion, though, I scheduled to run my first 5k ever early in the morning and then attend a Special Needs Egg hunt down in Norcross, followed by the family picnic held by that group.
So first I made my family get out of bed at 6 am on a Saturday to go do this thing with me.
I did a fairly shit job. I'm okay with that. I also never did one before and I'm with acknowledging that I'm not good at this whole running thing - yet. I don't need to be told I'm doing better than the people who didn't even show up. I may or may not be doing better than them, I don't know their story. What I know for real is that I'm a beginner at this and I wasn't counting on doing well, I was counting on finishing. So I made my family get up and watch me do a shit job but achieve a goal - I finished a 5k.
After that we went to Krystal and I ate like I had never had food before in my entire life.

It was possibly the best breakfast I ever consumed - which is completely untrue but you might have thought otherwise had you been there.

The special needs Easter Egg hunt was probably one of the best things ever for our special little guys. They held it in an enclosed baseball field - this helps out the parents with runners - and there were an amazing amount of eggs.

Charlie's MO was to run around and stuff as much candy in his mouth right there on the spot. Louis was charged with helping him actually get some into the basket.

Miles understood the drill more, he remembered, but he didn't really want to pick them up. He just wanted to step on them. To each his own, I supposed.
Julia however racked it up. Even with all three of my little kids getting FULL buckets (Louis is of course too big for such things, he says - although jumped right in to help Charlie) there was a ton of candy and eggs left on the field. The organizers REALLY out did themselves this year. Some years I've been to events where some kids got huge heaping buckets of eggs and other kids got about 6. This wasn't like that - there was MORE than enough for everyone which was so incredibly generous. I know it really meant a lot to the parents like me, the ones whose little guys normally "don't get as much" just because they don't quite understand or aren't able to participate at the same level as other children.

It's just candy and it's NOT important yet - the gesture was massive.
Afterward we went up to the shelter to enjoy the family picnic.
This pic makes me laugh - probably bcse Claire took it and couldn't see what she was shooting. She ALMOST got us!
Hot dogs and chips and wee tiny cupcakes were served and there was great rejoicing. I have to admit, by this time we'd all been up for hours and it was showing. We were getting tired. I considered suggesting the playground to the husband, did suggest it and then he looked at me like I'd lost my mind. We didn't suggest it to the children but beat a retreat to the car after we ate.

We started the drive home - and then Rita's happened. The car is still jacked up from the accident and we haven't been able to get the air conditioning fixed because everything is taking forever. So we were hot. And the car was hot. And the air was hot in the world. And Rita's was on the way home so...
Eventually we got home, and I collapsed asleep like the dead.

I don't think I was ever that tired in my entire life.

Doing lots of things sucks.

But it was totally awesome.

Friday, April 07, 2017

The One With Allergies From Hell

I have had this thing going on for weeks where allergies break out all over my skin. Well, not allergies but rather the result from allergies - rash, hives, whatever you want to call it. I'm allergic to something. Something erupts on my skin several times a day in a most disconcerting fashion. It makes me feel like this.
Ok that's a Fiji Mermaid. But that's about how I feel despite the fact that I have to remain civil and attend meetings and act like a grown up all day. First my skin starts to burn. That's the herald that it's incoming. You can't see it when the burn starts, but I could outline where it's going to erupt based on that burn. Then up it comes, in red splotches, dots, stripes etc. It stretches up and down my arms, my neck, back, legs, abdomen. Hell once it crawled up my neck and onto my face - during a meeting.

I thought my boss was going to have a heart attack, he looked up and said "Oh my god are you okay?" I smiled and glanced back at my laptop, "Yeah it's just allergies." Move forward- nothing to see here.

But WHAT allergy? WTF is doing this to me? I went to my primary doctor and he ran the gauntlet of tests. My SED rates were all nice and low so it's not autoimmune in nature. He put me on three different antihistamines to keep it under control This had the effect of pushing me into a zombie like trance,and doing nothing for the hives.

Well that isn't completely true - I had some serious relief for about 3 days. About day 3 whatever the allergen is said AH HA HERE I AM! Then my arms blew up in deep red burning and itching rash.

It seems likely that's its a food allergy. According to the internets, where everything is true and nothing is ever wrong or blown out of proportion, DAIRY is the most common food allergy because of all the shit they do to fuck with cows and our milk. So...I've given up dairy. I'm on day five I think? I don't know. I'm not counting per se - it's just recent so not hard to keep track of.

Once again I had three days of relative improvement, much like when I started antihistamines. Then yesterday my arms blew up like there was some "Miss Rash of 2017" contest they were participating in. My shoulders and armpits had a go as well. It was delightful.

I'm going to the allergist on the 18th so 11 more days until I hopefully learn something. If she says "contact dermatitis" I'll pretty much throw myself off a building as that's clearly not it. But allergist and dermatologists love to say that. Here, have some cortisone cream. You'll feel better.

It burns and it itches and it looks like shit.  As I lay in bed at night succumbing to the two benadryl required at bed time, I can't help but wonder if this is my new normal because folks if so we may have found the thing I'm not stronger than. I can't sustain with this level of sedating drug inside me. It's exhausting me. I'm struggling.

The Fiji Mermaid knows. That's why she's making that face.

Sunday, April 02, 2017

The Places You'll Go: Go Karts, Bears and Breakfast In The Cold

On the day it snowed it was around 28 degrees in the morning. I don't really remember how cold it was, what I do remember was that we didn't have winter coats with us AND that we decided to go drive Go Karts.
Why? I'm not sure. We went to breakfast and ate it shivering a bit despite the nearby heater. The breakfast place was Gatlinburg famous and the food was really good.
After breakfast we ambled down to a tourist trap to view bears who had an enclosure they were living in. We'd steadfastly avoided such places in the past because who the HELL would approve of such a thing? But then we learned the story, of how these bears were rescued from a HUNTING CAMP where they lived in a special reserve where they only lived there to be hunted. WHICH IS FLIPPING HORRIBLE. Was their enclosure as awesome as living out in nature and being free? Of course not. But there wasn't any doubt that they were loved and cared for - and their enclosure was large and nicely made. So yeah, not the best - but definitely better than what fate had in store for them initially.

Also at the tourist trap we purchased fudge, tervis tumblers and some other stuff. Why is it we have to buy fudge when we travel? Fudge is always the same, always with some sort of "local" flair on one or two flavors right? I wonder why it's a thing but I don't really even care. Fudge is really good.
By the time we were done shopping and seeing bears the snow was not only stopped, you couldn't tell it had happened that morning at all. It was cold but not the worst.

The oldest boy and I drove a car with the girl riding along with me to help me steer. She was tremendously helpful.

I have to say that there was something about flying around that track in the blistering cold, feeling my hands getting chapped and numb, letting the back end of that car get loose as we hit the remaining ice patches, that was in it's way life affirming. I'm alive. We're alive. Feel that wind, let it come so hard it HURTS. Feel the rush as you slide around the corners, as you barely miss your own kid in his own car. Death wasn't there. I'd put miles between me and death.

At least for the time being.

What do we say to the God of Death? 


Saturday, March 25, 2017

The Places You'll Go: Day Four

In the spirit of going places, remembering Aunt Debbie's legacy and putting some positive memory to end our trip we decided to stop for a couple of days in Gatlinburg on our way home. Nothing says "We're in Gatlinburg" like posing with a great big ass bear statue I think.
My husband and I were chased out of our hot tub during our honeymoon by a bear here in Gatlinburg. Maybe that's why I'm amused by taking photos of bears with my children.
I feel like it was probably more along the size of this latter one. I can't tell you, however, as our naked butts were busy running and carrying our booze as fast as we could back into our cabin. Stupid bear.
Besides taking pictures with bears we did the requisite touristy things. We went to the aquarium where I decided I wanted to touch a jellyfish as much as the kids did. It was REALLY kind of neat to touch them. They feel quite lovely and smooth. Little bastards of pain of suffering in disguise is what they are.
There were also stingrays to pet - a lot has changed here since we came on our honeymoon. Or maybe it hasn't and we were just in "we just got married" shock at the time. I can't even say.
The kids always love aquariums but I think I love them most of all. I still have this intense desire to get in the water with these beasts and know them, like some Aquatic Dr. Doolittle.

Oh my god - it just OCCURRED TO ME THAT THIS IS WHAT AQUAMAN IS - he's AQUATIC Dr. DOOLITTLE. How odd. Anyway...
I don't have a lot of profound take aways from our trip to the aquarium. It was a nice decompression from the stress and sadness that came before.
Maybe it was just a respite from the world. It served us well if so.

Thursday, March 23, 2017

The Places You'll Go: Day Three

Once upon a time a married couple with a very young daughter bought their first house. They bought a fixer-upper that needed a LOT of fixing-uping. That was okay as the man built houses for a living, and his brother owned a brick mason company and between them they had both the tools and the talent for turning any house into a lovely place. The home they bought was pretty large, possibly too large for a couple with one child and no more to come, but still they got it cheap because it was in such disrepair.
In their large detached two car garage were many pianos. It seemed to be storage for a couple dozen pianos made at the Starr-Gennett piano factory. Many were water damaged, or had other damage and were hauled away. One though was kept and cleaned up. A lovely upright of deep mahogany, with real ebony and ivory keys.
When I was about 3 or 4, the man - whom I called Grandpa because he was mine, told me that if I learned to play it I could have it.
It's one of those pieces that a person hauls around with them. I once broke into my grandmas house when her house was being auctioned off by some evil lawyers (which is a story for a different time) and with some friends made off with as much as I could in the way of family keepsakes - foremost being my piano. I've dragged it across the country from state to state.
I don't think I've had it tuned in 20 years.
The factory burned down, they stopped making pianos and focused on recording for a time - first as Starr-Gennett then as Gennett records. What's left now are just the shells of the buildings that manufactured one of the great "material possession" loves of my life, my piano.
After Aunt Debbie's funeral we drove over there and I wandered through the graveyard of this great place, wishing I had seen it sooner but glad I got the chance to finally walk around at this place.
It's lovely, they've made it a park.
There is a greenway people run on and bike on, and apparently they rent the building out for events. We met a lady who told us they held her prom there. I kind of like the idea of that, the music lives on in the shell of the building now.
Some of my favorite things around the little park at the factory were the many murals.There are murals all over Richmond and I have to kind of love a little town who embraces color and art in this way.

It was a fun walk down memory lane, to a place I had never been. I guess that's how you know you're home.

Sunday, March 19, 2017

The Places You'll Go: Day Two

It seems like the places we've gone have been too much for sad reasons lately. It isn't entirely true, but you know how harsh words loom larger than kind ones? Sad trips loom larger than happy ones as well.
We rolled north, returning to our homeland to say goodbye to someone we loved and with it came all the stress of travel, the joy of reunion and the heartbreak of death.
Pretty typical trip to Indiana lately, I must say.
We rolled into the church right at 10 am on the dot, running late as is our usual in a family with two special needs children, and I was directed into an ante room where we barged straight in on the whole family and Aunt Debbie's casket. The worshipers in the sanctuary were praying, and the processional inside had not begun. As we stumbled in, the twins, Julia and I, I gave Aunt Suzie a hug and right at that moment Miles chose to shout "Poop! I need diaper!"

Well if that's just not a circle of life moment I don't know what is.

I abandoned two of three children with Aunt Suzie and IN HEELS tore back out of the church to find my husband and oldest coming in, deposit Miles with them "He's pooped!" and run BACK into the church just in time to direct my own children to the back of the church. It's always better to be close to an exit when you have two severely autistic children, you never know when someone is going to begin shouting about poop, obviously.

The funny part is, I wasn't embarrassed. I've lived this life long enough that I can't be embarrassed by autism anymore. I felt bad that other people had to be part of the crazy at such a sad and stressful time but, that's also LIFE STUFF and life isn't always tidy and reverent.

I also happen to know Aunt Debbie would've laughed.
The little town where the girls lived (we called them the girls, grown ass almost 70 year old women and we called them the girls, I don't know why) is a little sleepy town on it's way to really damn hip. After the funeral we decided to go wander a bit and see what we could find to see and do, and to let the kids relax a little bit.
We found what might actually be the very worst ice cream shop in the world. I mean, there might be worse, but one usually expects a certain LEVEL of ice cream at these sort of artisan little creamery places right? First see how GRAINY that ice cream is? OMG IT IS TERRIBLE RIGHT? It tasted worse than it looks. It was GRAINY. As though it were Ice Milk which is something you probably never had unless you diet or grew up poor. My grandmother wasn't poor but had a weird thing for it.
It's garbage.
My kids however, thought it was amazeballs.

Trying to use hip words. Go with me.

Here was the really amazing part of our day, however, the moment of meaning in the sorrow that happened as we said goodbye to someone we loved. Julia said "We're just like Aunt Debbie like that man said." That man was the preacher at the funeral and he had talked about the way she loved to travel, and how she was always going places, seeing the world, and visiting he friends along the way. "We like to go lots of places and see the world too," Julia told me. "We are just like Aunt Debbie."

Really, that's one of the best things I've ever heard. And I know she would approve.

Wednesday, March 15, 2017

A Brief Pause While I Whine

I've been in this weird place between too much activity, too many ideas and not enough time. Thus I've got a whole series of posts written in my mind yet I've got to pause them and whine about myself.
It's my body. It's betraying me.
The betrayal in minor in nature, at this juncture. It's hives. It might sound like nothing and in fact it started out as sort of a rather run of the mill "Hmmm I wonder what I touched that I'm allergic to" sort of thing.
Then it continued, and got worse.
The hives arrive in swaths, on my arms, my legs, my back, my butt, my abdomen and now this week my neck and face. They arrive intermittently and leave after I get to the point where I think "OK NOW I REALLY CAN'T TAKE IT ANYMORE" they simply fade away. They come they go. They arrive when I'm working, when I'm walking, when I'm dining. They erupt during work outs and fade away as it suits them to do. I'm in some sort of hell driven by burning, itching patches of skin that are driving me mad.
I've been a good sport these past few weeks. I have complained intermittently. If you're on my Facebook it might feel like I've been complaining constantly but rest assured, if that were the case you'd have removed me by now. In fact I'd be over there complaining this very instant if that were the case. But my foresight in complaining on Facebook and taking pictures actually provided me with very good documentation and timeline for my doctor, even if it was peppered with commentary like "IT WAS MUCH WORSE THAN THIS I PROMISE YOU" when I shared it with him.
It's been going on for weeks and basically according to the internet I'm going to die a horrible death. That's pretty much all I could discern. I tried apple cider vinegar and essential oils but alas science had to come into it and thus I sat in Dr Sexy van Gogh's office today. (That's what we call him).

I was fortunate to be having a righteous flare up that he was able to watch come to life on my arm. He asked me a bunch of questions including some that may in fact end up being pertinent.

  1. Does Benadryl make it go away? Yes - for a while.
  2. Am I allergic to anything? Yes - I AM ALLERGIC TO ALL THIINGS THAT GROW ON THE EARTH
The latter is only a slight exaggeration. I'm the person that when allergy testing is done they can't exactly tell what I'm allergic to because the test they do on your back just causes my entire back to become one huge swollen hive. "All the things," is pretty much my diagnosis. The things which grow in the earth and the things which have hair and live on the earth - I am allergic to them. I am allergic to beef. I have ISSUES clearly.

An autoimmune disorder is a possibility however, usually autoimmune related hives don't respond to antihistamine as they are NOT histamine related. This isn't an absolute but - it's most often true.

I have to admit that autoimmune thing has me spooked. My mom had various autoimmune issues and I'm terrified of walking her path due to a bad DNA load that I can't avoid. 

So he took many vials of blood and is running the gauntlet of bloodwork to see if anything jumps up. He's changed my medicine to basically keep me on one antihistamine or another at all times. With a dose of another antihistamine thrown in. 

While we talked, he explained that if it's an easy diagnosis and treatment we'll just devise it and go from there. If it's complicated he'll send me to the right specialist depending on what the tests say. 

His opinion is that because I'm what he calls "Hyper-allergic" (fancy medical talk for allergic every damn thing) that one of my allergies has chosen to express itself in a different way. I personally might have opted for interpretive dance or mixed media art but I guess I don't get to choose. 

I'm sitting here zoned out on the antihistamine he told me to take earlier and realizing I'm gonna go full zombie when I take one at bed time. I was going to go run but I don't see that happening. In fact the idea of finding pajamas to put on becomes more and more dear.

I'm just hoping I'm not fucked in some irreversible way. This is not fun.

Monday, March 13, 2017

The Places You'll Go: Day One

When someone dies there is an insane amount of stuff to do. I'm not sure if that's by design to keep the grieving busy, plugged into the "business" of life, but it's true. There are people to call, there are things to sign. There are documents to review. There are more people to call.

It's about a year and a half since both of my parents died and I still have those moments when I realize I never contacted person X. I also don't know how to get ahold of person X, if they're living, where they are now etc, yet at some point they were a significant part of one or both of my parent's lives and it pains me a little not to have been able to share with them that they died. Sometimes it's simpler, sometimes it's just that in the overwhelming moments after their deaths, I forgot.

It was a lapse like that last week that caused me to find out that one of my beloved aunties died via Facebook. Settling into the category of "where was I when I heard" is now the moment that I was sipping coffee in my kitchen and scrolling through Facebook when I saw it. A condolence to one Aunt regarding the other.

Aunt Debbie had died. A frantic phone call to my SIL who had only just recently heard also confirmed the worst.

So north we had to go, once again making the trip out of grief.

I have a short list of people who have known me longer than my memory extends. I don't mean random family who have known of me, rather I mean truly know me. Losing these people is a bit like losing some of my self, losing some of my history - the bits I don't recall. They know stories I don't know and once they are gone those stories are lost forever. The number of times I realize I need my mom to tell me something or remind of the details of something are legion - and growing.
We rented a van because ours is still crashed up and headed back toward the land of our people. We went to show support and love for Aunt Suzie, and love & respect to our Aunt Debbie who was a staple in our family.
Kids handle everything better than adults I think. Julia loved her Aunt Debbie hugely but seemed, despite being sad, to accept that this happened whereas I'm still compelled to rage. Maybe it's because little kids whole worlds are dictated to them, they don't assume things could go a different way.

That's probably the fairytale of being adult - you think you could've changed fate "if only".

Post Script: Julia spent a lot of time trying to decide what to wear to the funeral and settled on this.

While it wasn't what she actually wore, I feel like Aunt Debbie would have truly appreciated the spirit in which this plan was made.

Saturday, February 25, 2017

Semi Trucks and Hot Wax

I'm busy having a midlife crisis or so I hear, and in the spirit of that I'm embracing new things and trying to expand my boundaries.
I did something quite new on Monday. I was leaving work to go meet my family to buy shoes for the kids since they were off for President's day, and got hit by a semi.
That was new.

I haven't ever been in accident as an adult, nor as a driver. I was in the car once when my mom was hit head on by a dude who crossed the center lane. It was before cell phones and I don't even remember it that well. It was pouring rain, and it all took a long time. Those things I recall.

This dude was stopped and then decided to back up and when it was all said and done the front of my van was slammed into his tires. Luckily I had actually stopped, thinking he'd see me and stop also. I had nowhere to go and watching that big old rig keep backing up was one of the least pleasant experiences of my week. I could have bailed out, had he continued to back up and smoosh my car. But luckily he felt or heard the impact and stopped.

So that's a thing I can say I have done. I have been hit by a semi. I think most people are not quite so fortunate as I. I've got this strained IT band thing, causing me some hip pain and soreness. I'm probably going to talk to my doctor about it again because it's not much better but all in all I know full well it could have been MUCH worse.

The other thing I did was add to my personal grooming routine. While it's pretty well established that I'm an eyebrow threading addict, and I love a good mani/pedi like all other surburban dweller females, now I've adding a new level of WAXING to my life.

I went and got the Brazilian wax.

I went to Brazilian Wax by Andrea which is a local chain and is RIDICULOUSLY CHEAP. It's supposed to be one of the best places around for this sort of shenanigans and I figured I am almost 50 let's live a little. I've done funky colors thanks to Betty Beauty. I've done shaving. I've done 70s porn bush. I've rocked the gauntlet with the except of adding a merkin. I thought it was time to spread my wings, so to speak.

So first of all, this isn't for the modest. I've had four kids so I'm all out of modesty. A small waif of a human, possibly an elf, with a shocking red color of hair came in and began chatting me up and she slathered lava on my crotch.

Oddly, it wasn't that bad, sort of like wow that's hot but then it got better.

We chatted about Betty Beauty (above linked) and various waxing things and the EpiLady of old and somewhere in all this chatter she began THE REMOVAL.

Honestly, it just wasn't that bad.

If you've ever had your eyebrows waxed okay yes, it feels exactly like that. It feels like that OVER a greater area of skin at one time but it's just exactly like that. It wasn't some sort of fresh hell of agony invented by the Great Satan to torture us ladies for Eve's sins. No it just was just, "Oh Damn" and then it was over. Now repeat that few times.

There's a bit of an indignity as you're making small talk with someone who's busily grooming your crotch but let's face it, you wouldn't be waxing off your pubes if you were hugely concerned about your dignity now would you?

There is nothing dignified about spreading your ass cheeks while laying face down so she can clean up your "rear area". If dignity is high on your list, leave this off.

I had to take a week off from working out after the accident, so I've spent it eating candy and losing my dignity at the hands of an elf human hybrid.

But hey, now I can say that's another thing I've done. I'm going back for legs and armpits - and will I keep the Brazilian?

Wouldn't you like to know?

Sunday, February 12, 2017

The Currency of Love

Today during a mandated sweep and clean operation of Julia's room a discovery was made by her brother.
These are Julia dollars and apparently they're worth ten thousand regular dollars. You can also exchange them for love, which she says is endless. I had never seen them or heard about them until today, when they were unearthed in the much needed cleaning of her room.

I've been thinking a lot of thoughts lately, about love and feelings and since it's almost valentine's day maybe I've been inspired by candy hearts and decorative fat babies with arrows.

Different kinds of love have different prices out there in life. There's the kind of love you have for those first loves, those mistake loves that are how you learn what love is and isn't. You lose part of yourself in them, and you change based on what you learn. Sometimes there are loves that could've been the RIGHT one but the timing was wrong, and the price of the regret can be unending. You'll always wonder just a little bit "what if?"

The love for your children is different. My own experience was that the moment I became pregnant I began to change, and the fierceness with which I love my children is not quantifiable by man. A friend once said "I'd not only take a bullet for my children, I'd take a slow saw to the neck." That about sums it up to me. There is nothing I wouldn't do for them. I get annoyed when I have to get out of bed and parent in the night, don't be fooled. I don't leap out of like a fairy and flit about full of joy and happiness. But when there is coughing, or retching, or other sounds that aren't sleeping my eyes pop open and I listen. I get up.

Sometimes I open my eyes in the middle of the night and listen intently to them sleeping. In the room next to mine, just a few feet from my head, three boys slumber. I can hear the one who snores, and the one who rolls around and flops in his sleep, and the one who giggles in his sleep. I listen intently for the sounds that are the three of them. The girl is further down the hall and I'll have to creep down the hall and peek for a good inspection.

Then I go pee because I'm up and gravity is a thing and I had four kids so give me a break.

The love of my children has become a currency I'm paying in another way. I started working out because I was over 300 pounds and had a heart incident. It started out as vanity, I was ashamed of how I looked. I was ashamed that arthritis in my knee was keeping me from using stairs at work. I was ashamed that I tried to do aerobics and collapsed on the floor crying after 7 minutes.

I vowed I wasn't going to shop in fat girl stores any more. I was going to be SKINNY. No one was EVER going to yell rude things at me (they still do btw) and I was going to make sure no one could EVER refer to me as fat again with any sort of basis in reality.

Then eventually, despite that voice in my head saying all the stuff above, it became about being more healthy. My heart condition is a real thing. I actually have a couple of different things happening heart-wise, one because of the other, and they have names and sound super scary and everything. They are the sort of things that aren't really that big of a deal if you are healthy and stuff. They are the sort of things that people ignore and then one day they have heart failure and everyone goes "Wow dead at 50 who knew X could kill you?"

X can kill you. X will always kill you.

But the reality hit me in 2015 when both of my parents up and died. The first thing was that they'd both died of X, those things that might've been handled so differently if dealt with earlier. The second thing though was the reality that suddenly my brothers and I were orphans. At 46, 36 and 26 we now were on our own. Yes we're all grown but it was a sobering moment because you never really think you'll be orphaned yet there we were.

My own children are some day going to be orphans.  I have two children who will never, ever be able to do for themselves. The other two, if I died today, would be very sad but would also be FINE. They're smart, they're capable. The Jesuits say give us the child for the first seven years and we'll give you the man well, she'll be 7 this year and he's 14 and frankly - while I don't WANT TO DIE now, I'm not afraid of what will happen to them. I know solidly in my heart they will be fine.

But my twins....will not.

They need me and/or their father alive as long as possible to care for them. Maybe some day to over see where they go live when we can no longer care for them. So I go to the gym. I try to watch what I eat (some days more than others let me tell you). I am running. I'm terrible at it, but I also hate being terrible at things so I keep going. So when I'm sweating and I'm hurting, I'm paying part of the currency of love. I'm paying the price of loving them so much, and I don't regret it.

I regret eating whatever I wanted for 20 years, but not for loving them this much. I lift weights on Tuesday and Thursdays and push myself to run up that hill even though my legs are about to brick. I push and push and push. I have to lose more weight, not tons, but more to ease the strain on my heart from all this extra fat. I need to build strong bones and keep them as I age so that I'm not made weak too soon by the toll of years.

I'm putting it off, this aging thing. My vanity likes the smaller sizes but my heart likes it when it gets to NOT take blood pressure medicine and when the ridiculously expensive tests don't find anything bad beyond what's known.

I could say I want to stay alive just because I'm selfish and I want all of my days. But actually I want my days so that I'm here not just for me, but for them. That's the price of loving them. It's part fear, it's part just plain love. But it's real, and it's a currency I will gladly pay until the day I die.

Saturday, February 04, 2017

Breathing Is The Hardest Thing To Do

The subject of resentment has come up quite a bit lately with friends as we talk about the world of having disabled children. My friend Christine talked to me about how another blogger she was reading seemed so ANGRY, so upset with her child and that it made it hard to read her. I think that's an easy trap to fall into. I also think that maybe the blogger is writing out her frustrations and sorrow so maybe that's how she keeps from spilling it out onto her child.
We've all read those stories, parent of special needs child commits murder, or murder/suicide, because they can't deal with it ONE MORE MOMENT. Sometimes it's not that simple.
I sat once years ago in a training session with about 40 other special needs parents where we were supposed to learn about waivers and other government help we could get for our children, or at least learn what help there was. A woman sitting a few seats away from me was asking questions about her son who was quadriplegic with many other health issues. I watched her go from hope to exasperation, to hopeless as  the sea of forms and nebulous certainty of what the future held became clearer. She literally said the words, "No one will take my child when I die, no one will help me. At this point I guess when I think I'm close to dying I guess I'll have to kill us both."

Then she started crying.

I understood more about the future in those moments than I had ever conceived possible. What I realized was that you have to sometimes accept the lesser version of your dreams - sometimes it's requisite to your own sanity.

I'd be lying if sometimes I don't break down into tears at story time in the evenings, because I have 12 year olds who still delight at me reading Sandra Boynton books in silly voices. I break down because I wonder who will read these books to them when they are old men with grey hair and I'm long dead. Will they miss these books? Will they be someplace where they are loved? What is going to happen to my children?

The flip side of that is that I accept that I can't completely control what happens. I can make plans, I can try to make arrangements and sort things to the best of my ability. I can't let my soul be destroyed if they don't work out exactly as I want them to. There are a lot of moving pieces in this life, and they don't get nailed down very well when you're a special needs mom.

I get frustrated. I get annoyed when Miles is being a shit head because sometimes he is LEGITIMATELY being a shit head. I get annoyed when either of them is having an autism melt down. But I can't let that feeling of "everything is bad" that might exist in moments or even hours consume me. SOMETIMES they do. Sometimes I cry. Sometimes I text my best friend the details of the poop horror show that can be my life.

And then I get on with life.

I make a decision every day, as corny and pinteresty (that's totally a word now) as that might sound. I'm going to be happy. I'm going to pursue things that make me healthy, improve my life, and I'm going to try to be a better person and mom. I'm going to FAIL A LOT. But I'm also going to not fail on some things and that's good to.

That doesn't mean that what I'm writing here is a sugar coated more delicious version of the pain and anguish it is to have two children that aren't what you dreamed of. It just means that I've sorted out how to deal with it, and how I'm not going to let it ruin the one pass I get through this life. This works for me. It might not work for you.

As for me, I look back on photos like this and think man - if I survived that, I can do anything.
You just have to remember to breathe. Sometimes that's the hard bit.

Saturday, January 21, 2017

Amber Is The Color of Your Energy

It has been a pretty good autism day which is the first sign that something super stupid is about to happen. I had played Hungry Hungry Hippos, painted the toenails of the girl and listened to her read two books. Lunch and breakfast were without incident. I did legs and core, and some more core later. Things were quiet. All was well.

That's a harbinger of doom.

I was watching Forrest Gump, letting my own to toenails dry and texting with Laura when it occurred to me it had been some time since I saw the twins.That's when the smell hit me.

Twelve year olds with poop that's been waiting for relief for any amount of time isn't a fun time for anyone. The intimate details of what that sort of clean up involves I'll save for my closest friends (Sorry for the mental image Laura) but let's say it's unpleasant. Sometimes there isn't anything for it but to bathe them, just like when they were babies.

I'm endlessly amused by the names of the man soap available to me in the bathroom. I have to admit, it makes the poop-removal scrub down entertaining as hell sometimes. After I wash Charlie with dandruff shampoo I finish up with with a scrub singing along to the name of the soap "Desssssssperaaaado.....why don't you COME TO YOUR SENSES?"

I entertain the hell out of myself.  It helps me forget that I'm washing my 12 year old because he still poops his pants. He laughs because I'm singing and getting wet. They laugh and dance around in the shower because it's fun.

Next child of course needs the same attention but this time it's time for the smell of "Goddamn dirty hippies" as my Dad would say. AMBER. A patchouli something or other smell goes all over Miles to remove the horrible poop and pee that's been there too long smell.

I'm a bad parent. I can't believe I left them so long without changing them. "OHHHH AMBER IS THE COLOR OF YOUR ENERGY!!!" I sing. (That's the only line I know from that song because I'm not a goddamn dirty hippie.)

Oh fuck off that's a joke.

Now they're clean and one smells like a guy who's been out riding fences and the other like that dirty hippie thing but I've got to say, despite all the poop scrubbing and soapy singing it's still been a pretty good day. Now take that into account and look at my face.
Seriously, this is a good day.

You want no part of a bad day.

Sunday, January 08, 2017

The Fairytale of Solo Pooping and Other Autism Parenting Nonsense

There was a time when I would often find myself sitting upon the toilet with a small boy perched upon my lap. I would be there to answer one of nature's calls, and the child would find me sitting (having sought me out as I'm not allowed to stray) and would climb upon my lap.

This presents a number of issues. First of all no part of my toilet training ever included "How to void one's bladder or intestines while holding a child." In fact, I can admit I never was able to accomplish is regardless of how desperately I might have needed to do before that moment. They were confusing and frustrating times. How do you explain to a child that doesn't understand that THIS seat is different from every other seat? When I sit on THIS seat you can't sit on my lap, but on every other seat we're good?


I'm not sure how we actually ever graduated from that phase except there was probably some screaming and some locked doors involved. Locked doors might seem like the obvious answer but the twins have an intense need to be ABLE to get to me. Their father gets away with pooping on his own. I, however, can at LEAST count on someone chanting/counting/stemming/singing outside my bathroom door at the minimum. They seem to need me to acknowledge them, to confirm a small piece of object permanence maybe they're missing. "I'll be out in a minute," I'll call. "Everything is OK Mommy will be right out."

Sometimes they simply pop open to door and look at me. They don't stay, they take a look and leave - swinging the door wide open so it doesn't accidentally shut again. The oldest child has come upon me more than once, moaning in horror "MOM WHY IS THE DOOR OPEN" and shutting it. I'm not sure which of us he's more embarrassed for.

Dude sometimes I gotta poop, what do you want from me kid? I can't ALWAYS GET UP AND SHUT THE DAMN DOOR AGAIN.

If we return to the subject of locks, you might just say "Damn woman, just lock that door." Well I do, on occasion. There are whole days that pass when I can safely lock the bathroom door, do what nature requires and exit feeling lighter with hands scented delightfully from some fancy soap. Those are damn good days, I gotta admit. However there are many more days where me locking the door equals a 12 year old boy in full on autism panic yelling "OPEN DOOR OPEN DOOR" when he realizes I am behind a door he can't get through.

He can't be separated from me. He might not need to be with me 24/7 any longer but he requires it as an option.

Some days this one thing makes me feel like some bizarre alien. All parents experience this with their small children. We tut-tut and giggle over the joy we get when solo showers happen, or being just alone in the bathroom with no spectators. But the prospect of that being your LIFE is sobering. It stops being cute.

It is a form of torture played out on a minuscule scale. A small human dignity shall be disallowed. You won't be harmed by it. It's not worth truly complaining about. In fact compared to all the terrible things that happen in the world you're just fine and seriously hush, you haven't got any problems. Yet, there is it, this thing that other people can expect from their 12 year olds that you as an autism parent can't.

It's unfair.

Life isn't fair, my mom used to say. Get over it.

She was right. It's probably the most important thing she ever taught me. It's pretty much all that gets me through some days.

Tuesday, January 03, 2017

Because I'm Afraid OF WORMS Roxanne !

So for the purposes of education worms were put into these little plastic cups which were named WORM hotels. The cups were clear, and the worms could move about and the kids could watch them do their "eat dirt make dirt" routine.

Science, I suppose.

There is actually a part of me, the part who's brain has been softened by the internet I guess, who thought "Well that's terrible THAT POOR WORM I BET IT WAS TERRIFIED."
I've lost my damn mind. It's a WORM. I pulled off the packing tape which was on the top (by the way teachers - the worm COULD have gotten stuck to the packing tape across the top which would've made for a worm tragedy) and we set him free in our garden. I'm growing metal things there, nice right?
I'm a kid who used to spend summer evenings after the rains running through backyards with a flashlight and friends, hunting under dropped lily leaves, near and around gardens, for earthworms who were mistakenly sliding along the soil. We were hunting nightcrawlers, the biggest and tastiest worms, for the men of the neighborhood to fish with. My grandpa, other grandpas, other people's dads would come by the next day for a coffee and take coffee cans full of moist soil chocked full of these fat worms.

We made great bait hunters, we truly did.

I am completely unsure where I was going with this story, but I found it sitting in drafts this morning when starting a different project. So I'm hitting publish anyway. My boat my rules.

Also, I'm pretty sure that worm was dead but I played it off. #acting !