Sandpaper Towels

Do you know how long it takes for a large load of laundry to hang dry?

Drying laundry by the fireplace

Too long. Too! Damn! Long!

Our dryer stopped heating on Saturday and as of today – we’ve made it through our most beloved clothing.

If you don’t have favorite clothing, then you might be Neuro-Typical! Our family is full of incredible neuro-divergent people and the “soft” clothes are the best.

The last load I did had jeans and towels in it and let me tell you…..jeans and towels dry much faster in the dryer. They even dry much faster on a line, in the sun or wind. They take more than 3 days when it’s kind of grey and “blah” and you hang them indoors.

So, today I washed the “soft” clothes and have hung them beside the fire. Only the best for our favorite clothes.

PS. I’m really hoping that the heating coil arrives soon!

PPS. Our towels feel like sand paper. It’s EPIC! You shower and then exfoliate. It’s a win. Fortunately my kids have good memories of crunchy towels as I used to line dry everything when they were little and I had boundless energy and optimism!

Not Quite Drowning?

Is there a single word for “not quite drowning”?

That moment when a person in the water is struggling with all their might. Gasping for air. Popping above the water just long enough to gulp a quick breath. It’s not quite enough to refresh or revive but it’s just enough to prolong the inevitable. Your adrenaline kicks in and even though you’re exhausted, you still thrash around wasting precious energy, air, resources……

That’s a bit how I feel.

Brutal, eh?

I’d say it’s been quite a week. But on further reflection, it’s been quite a month, and a hell of a year and quite honestly, it’s been a decade of chaos and loss and trauma.

There’s something about the idea of surrender. Something still and quiet and peaceful. In some ways, it feels like failure or giving up. And I guess it truly is “giving up”. Giving up on the assumption that I can “do” all of this. Giving up the arrogance that says I’m super human and can do the impossible. Giving up on the idea that I’m in control.

Often we think that “drowning + surrender = death” but maybe we are focusing on the wrong thing. Maybe “drowning + surrender = truly living”.

Maybe it’s the weight that we need to surrender.

Maybe it’s the chaos that we need to surrender.

Maybe it’s the control that we need to surrender.

And maybe…in the surrender, we will be able to truly live, unencumbered by weight that drags us down, tires us out and distracts us from what we really want to do.

It’s probably a good thing that I have a counselling appointment tomorrow, eh?

Derailed

I had ALL THE PLANS for today and I woke up with a migraine.

How do you handle it when your plans get derailed?

I’m typically a “roll with it” person. But when I have a migraine everything grinds to a screeching halt.

I did manage to take a migraine med and get in for a massage and I’m feeling okay right now. Not great but I don’t feel like I’m going to puke….so that’s a win.

Hey! On the positive, I have my list ready for tomorrow, right?

Do you find it hard when plans change? Does it depend on the circumstances? I’d love to hear from you!

Wins and Shows….Hit me up, Please!

Jon left this morning for a week in Mississippi and New Orleans. A! WEEK!


I have a few too many things to juggle this weekend and I’m trying desperately to make a list but I’m dealing with some serious brain fog and it has me feeling like I’m swimming in Jello.

On top of that, I’ve recently added running into my “walking” routine and today my knee hurts. Epic!

So to sum it up – many thoughts in brain, brain foggy, knee hurts, kids are lunatics because routines off and I just want to go to bed!

Awesome, hey?

At some point, I’ll actually get it all sorted out.

In the win column for today, I cleaned the kitchen.

I have very low standards people!

I’d love to hear what your “wins” for today are! Drop me a comment.

ps. Show suggestions to watch so I don’t watch “our shows” while Jon’s gone. We have amazon prime video, and Netflix. What are your favs?

T minus One

So, If I’m honest, there probably will be no “typical” post for this Gratitude Challenge. You may get a picture with a description. You may get a long winded story or wonder of all wonders, I may actually plunk out some well thought out gratitude prose. Just come along for the journey and share……please share something you’re thankful or grateful for. That’s the fun, creating a community where we can encourage one another.

I sometimes get told that I look like I’ve got it all together. I have to try really hard to not screech at the people who say this, because it’s all just smoke and mirrors. I’m one of the biggest “Hot Mess” moms that you’ll ever come across.

Today, on the day before the Gratitude Challenge officially starts, I’m super grateful for lipstick, messy buns and sunglasses.

I’m not a morning person. Not! at! all! and most days, I crawl out of bed and attempt to wrangle children, feed and clothe them and get them to school before I get “THE CALL” that my child has been marked absent.

If I beat that call, I’m totally winning. Even if I don’t! Still winning!

But lipstick, messy buns and sunglasses make me feel like a million bucks, until I have to go inside the school, take my sunglasses off and then, inevitably someone asks me if I’m okay. Because the mom who picks my kids up later in the day, she has make up on and clean clothes. Early morning mom…..she has lipstick, sun glasses and yesterday’s clothes; and she ROCKS it.

See, it’s not all deep, heavy stuff like the last few days, BUT…..cultivating a mindset of gratitude will help to get you through those tough kinds of days, if they ever happen to you.

Are you ready for tomorrow? I hope so. I can’t wait to hear some of the things that You’re grateful or thankful for.


Living in “Not Enough”

I’ve spent most of this afternoon/evening crying.

Daily PhotosThis sweet kitty came and snuggled me all on his own initiative.

I’m okay…..well, I’m not okay but I’m sure I will be and it’s not the end of the world…..I’m just tired.

Well, I don’t like that either, because I’m not “just” tired.  I’m exhausted.  I’m wasted.  I’m trying…..

I’m trying really, REALLY hard.

I’m trying to hold myself together.
I’m trying to hold my boys toge……………

I edit myself all the time.  I figure that you must be as sick of hearing “all that I have to do” as I am of thinking about it.

And yet, every  time that I hit “POST” someone leaves a comment or sends me a message or tells me later, that they don’t feel alone, or they “get it” a little bit more,or that they had no idea.  All of that….it brings awareness.  It helps to create community.  And community is especially important for our parents/caregivers within the special/high/complex needs community and that’s why I continue to write and overshare.

I know that some people look at me and think that I have it all together.  Ha Ha Ha ha!

I would NEVER claim to have it all together.  I am a hot mess, sometimes presented fairly nicely, with overly done make up and enough hairspray to make my 90s’ self proud. Sometimes I’m rocking the greasy hair, messy bun with yesterday’s yoga pants and baggy shirt, all rounded out with lipstick and shades…….like putting lipstick on a pig, right?

I wish I was perfect…..well, not really but I wish I had a house cleaner and maybe a nanny.

I might be a little more sane, if I had that…..but I don’t and so I do what I can and often…..always…..that’s not enough to be perfect.  Mostly, it’s just not enough.

I struggle with the fact that I may be judged for my children’s inability to self-regulate like lots of kids can.
I struggle with my inability to do everything that I want to do.

I struggle with my inability to do things that I feel others think I should be able to do.

That last comment is a huge issue for me……. I tear up writing it. I tear up re-reading it.  It’s where I’m stopping today……why do I place so much weight on what “people” may think of me…….

Maybe this is why I feel so strongly to advocate and champion for kids with invisible disabilities; and for understanding and compassion for all!

The fact of the matter is…..I am disabled!

Definition of disabled

1 a : impaired or limited by a physical, mental, cognitive, or developmental condition 

I look healthy and for the most part happy and well rounded BUT…

I am limited in my physical and mental abilities.  Not cognitively, although the “brain fog” from stress and exhaustion is a real thing.  I have HUGE amounts of empathy for people who have Executive Function Issues and even Brain Injury because…….I used to be extremely capable of an insane amount of organization and administration. With all the stress and trauma we’ve dealt with over the past decade (its been over a decade), everyday I walk around saying, “Why am I here and what was I going to do?”  I walk around in this “fog” where I can be talking to someone, and suddenly realize that I have no idea what I was talking about…..it’s gone.  That too happens, daily.  Some days its better and some it’s worse.

There are things that I can’t do from an emotional energy standpoint and even from a physical energy standpoint……and its hard…..because I look like I am okay.

And every time, I have to say that “I can’t”… it feels like a punch to the stomach.  I can’t do a school project with my kids. I can’t go on a field trip. I can’t run to the grocery store for a quick pick up. I can’t make that phone call. I can’t type that email. I can’t do that laundry. I can’t clean the way I want to. I can’t…….

Can you imagine?  If you can’t…..call yourself extremely blessed.  I don’t begrudge it of you.  I used to be you.  You are blessed. Please don’t take it for granted.  But Please… do have compassion for those who may not be able to.

If you can imagine……know that I get it.  To some degree, I get it. I get that there are things you are good at and things you wish you could do. I get that there are things you CAN make happen , but it comes at great cost and sacrifice to your (and your family’s) well being. I get that there are things you just CANNOT MAKE HAPPEN.  And I get that it sucks.

If you’re struggling, know that you’re not alone. It’s hard.  Know that it’s okay to have the good days and to celebrate them; and to have the bad days and to hate them. Know that a good morning can turn into a bad afternoon or vice versa; and that every day starts anew with new possibilities.  Know that it’s okay to be filled up with sadness, and even to sit with it for a moment, but that you need to let it go to make room  for something else. Be easy on yourself and extend grace and compassion to yourself.

Judah wondered why I was  crying today and I told him that my heart felt overly full of sadness and crying was helping to pour some of the sadness out.  That I was making room for other emotions to come and fill me up.

I think I’ve emptied enough sadness out and I’m going to be careful with myself over the next few days and do things to help fill me up.  Tomorrow is a “Mental Health Day” for me and my littles. I’m looking forward to it.

 

 

 

Just a glimpse….

I’m sitting in my living room, looking wistfully out the window, knowing that I’ve already spent my fair share of time outdoors, today.

I don’t want a sunburn and while I slather up when necessary…..I’ve never really liked the feeling of lotion on my body.  So I opt for some indoor time….at least until I need to pick up the boys from school and then I’ll greet the sun with smiles and a spritz of sunscreen.  Until then, I close my eyes and reminisce of the golden warmth soaking into my soul, revitalizing me.

When I open my eyes, I see evidence that Judah’s been here. 


The dregs of his Honey Nut Cheerios and Almond Milk make me smile.  This boy of mine is such a gift.  He is an incredible living paradox.  Verging on the edge of violence in his stance against injustice…….and yet indiscriminate in his compassion.  Have I told you about the time we took the boys to see Guardians of the Galaxy Vol. 2 and he cried when Ego was destroyed.  He clasped my hands to his heart and whispered through his tears,  “But WHY? Everyone deserves another chance?”

I don’t ever want him to lose that heart for others.  I will fiercely protect and nurture that empathy, tenderness, and humanity with all my being. He is such a gift to me, to us…..to the world.


I look over to my right and see glorious creativity within the chaos of these walls.  That stack of mail will become “creations” before it hits the recycling bin. I savour the moments when I can sit, drink my coffee and knit a few rows on a dishcloth.  I like small projects because I can finish them in between all the glorious distraction.  More often than not, that coffee grows cold and my knitting is interrupted but it’s ok because these moments don’t last.  

The screams to break up a fight or get a snack for someone……they are becoming fewer.  The yelling because there is no toilet paper on the roll and no one thought to look in the cupboard…….or because someone ate someone else’s ice cream.  It’s still there but I’m less needed than I used to be.  Which is good cause there’s still a whole lot of needy people in the family and I’ll take whatever reprieve I can get.  

Moose – aptly renamed – as he’s not the smartest cat in the world……but he’s exactly what we needed.  He gives his love freely and unabashedly.   He allows for over excitable autistic hugs and purrs louder than I’ve ever heard from a cat.  It’s like audible Valium to soothe our souls from whatever anguish and trauma we may be experiencing.


I need to pick the kids up.  To leave this cocoon of quiet chaos.  I don’t want to.  

Illusions of Beauty layered on Brokenness

Today’s been a hard day for me.

Jon and I have been discussing getting away as a couple.  We need it.  Desperately!

Trying to sort out care for our children is hard.  It brings up insecurities and hurts from the past; and while there are truths that I know, I struggle to move beyond the feelings.

So many tears today. So many feelings.

I watched a TedX talk today and while it was an incredible talk….it highlighted things that I stuff, in an effort to cope.  There are stressors, as special needs parents,  that we just can’t escape or lay down and walk away from.

Exhaustion
Inadequacy
Trauma
Rejection
Brokenness
Grief
Judgment

There are times when I feel capable to carry on.  Other times, like today, I don’t know what to do.  And the tears fall, uncontrollably.

In an effort to pull myself back together and because we are supposed to be going out tonight (to connect with other parents of ASD kids), I do my hair and put my make-up on.

I layer on cover up, foundation and powder, in a effort to combat the destruction of a day of tears.  I  paint on my best smokey eye and in whispers, threaten myself to not mess it up…..as if sheer willpower alone, could hold the tears inside.   I curl my hair and back-comb it into submission.  It’s something I can control, in this uncontrollable chaos that is my life.  I spray on layer after layer of hairspray creating a shell, a protective layer of armor.  Creating the illusion of beauty on top of a layer of brokenness.

That should be my new tagline……

Illusions of beauty layered on brokenness.

 

Morning Musings

So, This is the first in a LONG time that I’ve pulled an all-nighter. I have absolutely no idea with the issue was other than, I WAS WIDE AWAKE!!!!! I think that I dozed for a few minutes as Judah was falling asleep (for the second time) around 11ish and then…..I watched every hour cycle through. SO AWESOME!!!!!

IMG_2885

But, the sky looks amazing. My kids are all still sleeping. (Thank God because it’s only 5:45am and no one has had any meds yet. And I’m desperately hoping that Jon wakes up soon and makes some coffee…..) I’ve managed to lay around for 6 hours….when do I ever have that luxury? I scoured IMG_7339Pinterest for all those ideas that I have but never have the time to look into. I put a ton of books on hold at the Library. I’ve found a Summer Reading Log for Siah. I’m dressed and made up for the day and have only the slightest hint of a headache.

I feel like its going to be very necessary to “HAVE A PLAN” and to “KEEP ON MOVING”. I’ll admit that I’m just a little nervous that if I slow down at all, before tonight, that I might just crash and that would not be a good thing. It’s hard enough staying on top of my little monkey’s antics, without being tired. Throw in a night of no sleep and BAM! Mommy better have a plan.

I think I’m going to make everyone tidy up a bit (and change the wifi password so that they know I mean business) and then we are gonna get out of here. I have no exact plan, but I think I have almost an hour to figure it out before they start to wake up.

Do you have a plan for getting through the day after a tough night? Any tips from you shift workers, or those who regularly pull all-nighters? I could use a little help today.

The Ups and Downs of Life

I’ve been struggling lately.

And I’m feeling really worn down.

Which is crazy frustrating cause I’m pretty much doing all the right things…….sort of.

I’m exercising more than I ever have in my entire life…..all put together. I’m eating well (except for the last 3 days). I’m regularly taking my anti-anxiety meds. I could maybe get a little more sleep, but 7 hours a night isn’t too bad. The sun has been out (should probably be out in it more.) I’ve got tons of seedlings started for my garden, and dirt all piled up ready to go. So many good things…….

And yet, I wish I felt stronger…..more powerful, more capable, more in control….

Instead, I’m walking around feeling……weary, defeated, uncertain…..

It doesn’t feel good.

There are things that I think I should be proud of, accomplishments that are a good thing……I’ve lost over 15 pounds. I literally ran myself down a size in my running tights. (my last run in them was a horrible run because I literally had to hold them up the entire run cause they wouldn’t stay up and the extra roomy fabric caused some extreme chaffing in some sensitive areas……ahem!!) I also ran/walked 100 km’s in March. That’s kind of mind blowing to me because…..well I’ve never done that before. The highest km’s I had done in a month when I was running before was April 2013 and I managed a whopping 46 kms. So I more than doubled it. And today, I ran for 25 mins, no walking, no stopping. 35 mins in total with a 5 mins walking warm up and a 5 min walking cool down. That’s all good right. I even managed to pound out 4.5km in that 35 mins. So it’s not like I’m sprinting, but I kept up a steady pace……..

I’m just………I dunno. Today I actually felt depressed about my life. I don’t think I’ve felt like this since about 3/4 of the way through Angelica’s cancer treatment.

I posted a comment on Facebook the other night…..

Sometimes I think about the people who seem to have it all together and how everything seems to really work for them…..then I wonder if somebody might be thinking that about me and then I laugh and laugh and laugh – ’cause seriously?…….and then maybe, I cry. #sometimeslifesastruggle #onefootinfrontoftheother

……I was thinking about how it’s seemed like a tough run for us for the past…..well, it’s been a long time. Nathaniel died in Jan 2007 and there has been a lot of tragedy since then and there was quite a bit of stress in our lives (for differing reasons) before then. It’s not that there’s not been good. There has been so much good, but the tough stuff wears on you.

I got some varied responses and to be honest, I struggled with actually posting it, and re-wrote it a few times before settling on that wording. I was concerned how people might take it. I wasn’t whining and those who know me…..I think they “heard” my voice in those words.

I was more saying that sometimes I might think that there are those who seem to have it all together or seem like they have a fairly “normal” or “less stressful” life, but no one knows what is really going on, behind the scenes, unless they actually know them and have been given insight into the inner workings of their lives. I’ve had people comment to me that I seem to have it all together or that I can handle SO much……or that certain things don’t seem to faze me.

What I know is that my life is not perfect. It’s not easy and if for some weird and strange reason, I “seem” to have it all together……that’s totally not the reality.

I really,Really, REALLY do NOT have it all together.

And if it could possibly appear that I might have it all together…….. then my view of someone else having it all together may be completely off, as well. Everyone lives life…..and life has a tendency to be messy and real. And sometimes you just gotta laugh, and sometimes….it’s just too hard to laugh and well…..well, then you might cry. And that’s ok too.

Regardless, I hate feeling like this.
I hate feeling………”less than….”
I hate feeling overwhelmed.
I hate feeling like I’m drowning…..it’s that feeling that things are just piling up on top of you and you can never get enough done to just stay caught up; let alone ever getting ahead…….I hate that feeling.

I don’t want to feel like this, but probably the hardest thing for me right now is that I’m not sure how to “change” or “fix” this; and that’s tough.

I just keep reminding myself that season’s change and this one will too.

What do you do when you are feeling a bit down or overwhelmed? Any suggestions?