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!!!!!

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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?

Running from or to?

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I started running in the beginning of March. I’m not sure if I was running away from something or running towards something. All I know is that I needed to do something…….and for some strange reason, running seemed like it fit what I was looking for.

I used to run…….a long time ago…….literally, a life time ago. When I was 16, I ran; and for the most part it was something to do to expend energy. I’ve never been particularly “athletic” but for a while I did run.

Not sure why I stopped but I did.

So I started again. After 20+ years, I’m not sure that you’d really call it running quite yet…….BUT…..I have been running in short intervals (and between extremely heavy breathing walking sections) and so I call it running.

About 2 weeks ago, I bought new runners and 2 runs after that, I landed one step badly on an uneven piece of curb and pulled my MCL.

I’m so bummed. I’ve been to physio. I’m icing it. I’m doing squats and lunges all to strengthen my quads and even though it seemed like my knees were good to go today……..not too long into my run (and walk). We had to slow up and walk.

I’m annoyed. I just want to run. I wonder…….I wonder about the whole “running away from” scenario. I wonder if I am just running towards this new phase off life. I wonder if I need to deal with stuff. I’m sure I do……..who doesn’t? Mostly I just want to run…..to feel the feeling that kicks in about half way into it…….to feel so good….

And I can’t…..not yet….but soon….

Paint, pain and chaos

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We are in the home stretch before we move. One month to go and I’m exhausted. There is still SO much to do but we will make it……we always do.

I’m sitting here in bed, icing my knees, in the middle of chaos. My room is a disaster……honestly, the house is a disaster AND we are starting school tomorrow in the middle of that disaster.

It feels like we got a fair amount accomplished but then when I go and look at my list……there is still so much to do even after I cross off all that we did today.

Oh well, tomorrow is another day, a fresh start and maybe I’ll feel a bit more cheerful in the morning.

Trying to Hold On

It’s been a long two years and I’m finding that I’m at the end of myself.

I’m tired. I’m exhausted. It’s more than just an “I have a 2 year old who wakes up at 5am” tired….

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Napping yesterday with Judah

It’s more of an “I have no idea how I’m still standing but I must carry on……” kind of tired.

I have no energy to call anyone or reach out to anyone or respond to e-mails….in fact, I am spending a ridiculous amount of energy just attempting to put these blog posts out there.

I want to be able to “DO” things, but I have no reserves left to draw from.

There are things that bring me life and although there is a small part of me that desperately wants to do these things……I don’t even really want to do them….and yet I do, in the hopes that I will be able to remind myself of who I was before “ALL OF THIS” happened.

And so, I make soap……which exhausts me and requires that Jon be there to walk me through it because I’m scared that I’ll make a mistake, forget something and wreck it. Something so stupid as following directions and mixing ingredients….much like making a cake……wrecks me. And says a lot to me about where I am at….

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And so I blog, even though I have to think and think and think and then delete; because what I’ve written isn’t what I want to say…….and that makes me feel so stupid because normally I LOVE WORDS. I love to be able to use words to share and encourage and inspire and even something that is normally first nature for me, requires a ton of effort…..and that says a lot to me about where I am at…..

I’ve been seeing a counselor for a while now because I want to feel better and in some ways I am, but it also feels like the more that I acknowledge how tough this journey has been and is….and the more we walk away from the intensely stressful times, the more difficult it is to hold myself together and continue carrying on. It’s like I’ve been living on adrenaline for the past two years and that alone is exhausting. The stress has done a number on me both physically and mentally.

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Someone’s having a sick day today. Middle of the night barfing sessions are NOT cool.

About 2 weeks ago, I said to Jon that I really needed to get away. Like, for my overall well being, I needed to get away. I’ve not wanted to “go away” because there were too many things that were unstable and the kids needed us……but I’m in a place where if I don’t get away….I feel like I will break down beyond what I can continue to hold together. I already feel incredibly broken.

I feel like, if I were a wagon….I used to be useful. I could carry many things and heavy things and now…..now I have a giant crack running through me and my wheels are broken and the straps and connectors that hold me to the “life” that is pulling me forward are so compromised. I feel like I’m sitting some place not useful or good for anything. And to be honest….it’s a horrible feeling. It’s a horrible feeling to feel like you HAVE to do things and to physically make yourself do things, like cleaning and laundry and meals and yet to not have the energy to do them. I don’t mean that in a flippant way, but literally….every time I do something, I am taking more and more out of my very being and there is so little left…..

I feel like this sounds so dramatic, and in someways I worry that it may come across the wrong way and yet…..to be honest, I don’t even have the energy to really get a good “worry” going on. Which in some ways, I guess is good, because we shouldn’t worry, but in other ways, it says a lot to me just about how rough of shape I am in because although I shouldn’t admit this….I have been a champion worrier in the past…….

Jon has booked some time away for us. Just he and I are going to Cabo at the beginning of July. It’s officially less than 30 days until we leave. I am so looking forward to a week of nothing. No responsibilities….no cooking….no cleaning….no one wanting me or needing me or taking from me….

I’m planning on sleeping and sleeping and sleeping some more. Sitting in the sun. Eating. I will probably cry….grieving all we’ve lost. And then I will come home; and I hope & pray that I will have a bit more to give, because I have ones who require it of me.

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Waking Up Happy

Miscommunication and misunderstanding……

Yesterday was another tough day.

We had our monthly chemo appointment in at Children’s on Monday and we got talking with our nurse about the what we “thought” was in the wings for Geli as far as knee replacements and surgery and time lines and the more we talked, the more it seemed like something just wasn’t right…..or that something was missing.

Long story short….what we thought was in the works for Geli regarding her knees and surgery and stuff….well, the reality is way no where close to what we had thought we understood.

There is a whole bunch of information that we don’t know and we are going in this coming up Wednesday for a meeting with our oncologist, our nurse clinician Jon, I and Geli.

It’s so frustrating. Geli has been in pain everyday all the time for a long time now. It’s wearing on her. It’s horrible for us to see her in pain.

I fell apart yesterday. Couldn’t stop crying. Don’t really have the energy to get into it all right now, but the bottom line…..something has to change.

We are praying like never before….for a miracle, for answers, for something.

Could you pray for us? We are beyond exhausted. Every blow feels like a HUGE hit and we are finding it harder and harder to cope with the blows and ever more difficult to recover from them.

I’d love to be able to explain a bit more, but I just don’t have it in me.

Pray for Geli
Pray for Jon and I
Pray for the kids

Thanks.

A Month at a Glance in Pictures.

I dumped all the pictures from my iPhone the other day and thought that rather than taking up a bunch of posts, I could just put all of these photos into one post and BAM! Get it all done.

I do still have one more post about our trip home from our vacation and I want to get it on here for memory sake, but it can wait one day….

October 9 – Mommy’s Little Helper

Judah helps me to load the dishwasher…such a helpful little guy

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October 11 – Gluten Free Pumpkin Pie & Chiro

I made a Gluten Free Pie Crust and it turned out fabulous. I was pretty excited.

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Geli had Chiro cause we are still dealing with the after effects of a year of intensive chemo.

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October 12 – Independence

Judah helps himself to some cereal. Not cool, Son!

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Still October 12 – Physio for Geli ..getting stronger and healthier!

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October 15 – Kathryn comes for a few days

Jon’s cousins Kathryn came over from Uganda, Africa and stayed with us for a weekend. It was AMAZING to see her and to spend some time with her. The time went by WAY TOO FAST!

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October 18th – Cranky Baby gets worn so Mommy can actually get some stuff done!

Being worn in a “wrap” transforms Cranky Baby into Happy Baby!

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Still October 18

Reference Photo so we can see “where” Geli is as as far as strength and mobility.

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October 21st – YOUTH!

Jeremy’s First Night at Youth – They had Nerf Gun Battle…it was pretty epic…they played in the whole church. How fun is that?

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…he was pretty excited about it and hasn’t stopped talking about it every since…almost every single day! Seriously!

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October 22nd – Homemade Pasta

I made Gluten Free Pasta from scratch…and it actually tasted pretty good.

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October 29 – CHEESE!

Pictures for Jack from Aunty and Judah

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And we carved pumpkins – although I am going to do a post on this because it’s tradition – and then we baked the seeds…that’s the best part. This is what 5 pumpkins worth of seeds looks like.

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October 31st – Siah’s Happy Pumpkin – I love him!

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October 31st – The Force is Strong with This One!

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October 31st – Butterfly

I didn’t dress up, but I did find a butterfly…and scared the crap out of my nephew…more on that story soon.

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November 1st – Gluten Free Crackers

I made these almond/cheese crackers and they taste like Cheese Nibs….I’ll definitely be making these again and cutting them into tiny one inch squares for a delicious snack.

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November 2nd – FIRE!!!

I used the self cleaning option on my oven and started a fire….and learned that I need to clean my oven more often…once every 2 years is just NOT ENOUGH! But it sure looks purty now!

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November 3rd – We’ve come a long way!

If you had told me ten years ago that I’d be eating fresh onion soup (like 3 whole onions chopped up), gluten free crackers and goat cheese – I’d had thought you were INSANE! And now this is just normal…a lot can change in ten years…

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November 3rd – Cranky Babies are not so easy or fun to take care of.

He’s been “not feeling well” for far too long!

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November 4th – Firsts!

Siah gets his first fillings at the dentist and ROCKS it like a champ.

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And that concludes a month of iPhone Photos…..Which one is your favorite?

ps….I’d love it if you’d check out my Etsy shop