BEING

Judah is at school.
I’m kind of in shock.
Let me be clear, I am NOT in school at this exact moment.

I took Hot Lunch to school for Siah, as a treat. Off handedly, I asked if Jude would like to stay with Siah and he agreed.  This afternoon is Art in his class or Games Group with the most amazing EA.  He said he’d like to stay for Art.  He was a little concerned about the 15 minutes of Daily Physical Activity but we’ve worked an arrangement for him and at this exact moment….the plan is that I will pick him and Siah up at the end of the school day.

I left the school almost scared and feeling really weird.  I don’t have my little shadow with me.  I was sure  he was going to come tearing out of the school after me begging to come home and saying that he’s changed his mind.  Nope!

I came home and wandered around, feeling a little lost.  I made lunch for myself and then surveyed my kingdom.  It’s in pretty rough shape.  My first thought was:

“I SHOULD clean this up. I ONLY have a short window of time.”

My second thought was:

“I don’t want to.”

So, I have curled up on the couch, with my laptop, in the middle of my mess.  I’ve put music on and am having a cup of tea.

I feel frantic, like I’m wasting an opportunity to “DO” things.  The list of things I COULD do is way TOO LONG!

The list of things I WANT to do, is also TOO LONG.

What’s more important than DOING ALL THE THINGS, is BEING!

I probably won’t get the opportunity to do much “resting” after I do nothing…..but in doing nothing, I am resting.

I COULD DO all the things but all those things will still be there when I’m done just “BEING.”

So for today, I’m breathing deeply and holding onto this moment.

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.

 

 

 

Daily Photos

Daily Photos

With Christmas Holidays, it’s been almost a month since we’ve been to see our Counsellor. I can’t hear what’s going on, but it’s pretty loud and intense. Obviously, we have some things to process. I can’t stress enough, the importance of taking care of you and your families mental health…..it’s just as important, if not more important than caring for your physical health. #noshame #justdoit #mentalhealth #processing #workitout #playtherapy
Posted by Intagrate Lite