Do you know how long it takes for a large load of laundry to hang dry?
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!
This is a thought that occupies space in my head and it frustrates me to no end. I do believe that I am good. I think I do good things for good reasons and yet….
There is this core belief way down in the very center of my being that says I’m not.
I’m not good enough. People are going to judge me. People are going to believe the worst about me. I will never truly be accepted and loved just as I am. I need to try harder to be good. I need to be perfect to be acceptable. I need to be smaller than I am. I need to act in a way that’s more acceptable or palatable. I need to diminish the things about me that are too much.
And even as those words loop through my brain, the counterpoint also continues to run.
I am enough. I am good. I can be big and accepted. I don’t have to diminish my self for anyone. I can be loud and strong and opinionated. I don’t have to fit into anyone’s mold. I was not created to fit inside of a humanly constructed world. I am amazing. I am creative. I am loving. I am compassionate. I have gifts that serve myself and those around me. I AM ENOUGH.
It feels like a war within me. It’s exhausting. The old thoughts feel less and less comfortable and the new thoughts fit better than they ever have and still…
Even though I know the truth. I still struggle to truly accept and embrace it as such.
With 2 weeks left in this year, I’m desperate for the year to be over.
I’m exhausted. I’m overwhelmed. I miss hugging the people I love. I miss…..everything. I miss normalcy. I miss the way it used to be.
Too often I feel miserable!
Not the sad, despondent kind of misery but the angry, annoyed, grouchy kind of miserable.
It doesn’t really make sense to be wishing this year away because between December 31, 2020 and January 1, 2021 nothing magical will have changed. There will be no “returning to normal.”
I think what I’m desperately seeking is HOPE.
Hope that things will be better. Hope that things will get easier. Hope that things will change.
I’m so tired of “holding it together”. I want to cry when my kids start to squabble. I want to send them to their rooms just so I won’t have to muster up the energy to help them navigate their own feelings of exhaustion and stress.
I want to be on a beach, in the sun, doing nothing. I want a magically clean house. I want time to be able to take care of my responsibilities. And the energy to actually do them.
I want space to breathe without feeling like I’m gasping for air. I want space to be able to paint and draw and write. I want to feel like I’m enjoying life and not like I’m constantly having to search for the glimmer of light within the darkness.
There is no “returning to normal.” I’ve been through enough trauma and tragedy to know that life doesn’t work like that. I know that holding on to the idea that things will go back to the way they were is not helpful for me. I need to grieve what has been lost and move forward. To find and create a new normal; but that’s not always easy…….
I’m tired. I’m so very tired. And that’s okay.
It’s been a tiring year.
Maybe in the “waiting for the end”; I’m also waiting for the beginning of what is to come.
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.
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?
This 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!
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.
We have an appointment on Wednesday to go and talk with someone at the School Board about this most recent incident with Jeremy.
I haven’t overshared about this situation for a number of reasons.
I’m utterly exhausted and traumatized by it all.
It requires immense energy to barely hold together a sweet boy who has been traumatized by it all.
I alternate between anger, apathy and anguish on an hourly basis.
It’s almost surreal to me except that it altogether , too real.
This is a culmination of years of educationally based trauma for Jeremy and us.
My brain keeps hurling words, thoughts and feelings at me and this is my attempt to capture some of those words and make sense of them all so that we can share consisely on Wednesday.
At the very Center of all of this is Jeremy.
My sweet boy. He struggles immensely as a young boy and that was the one thing that he ALWAYS had going for him. He was SO sweet and charming. Couldn’t focus if his life depended on it. Couldn’t read or write. Couldn’t decode social situations…..but he was absolutely darling. That was probably his biggest saving grace.
For all of his struggles, Jeremy has been desperate to connect…..desperate for relationship. He hasn’t been very good at it and when he was finally diagnosed at 13 years old, during his second attempt at an assessment, with Autism…..so many things made sense.
I find it interesting and so very incredibly frustrating that the older he gets, the less patience, support and care, people seem willing to offer. It’s like they expect him to have “gotten” it (whatever “it” is) and are more likely to judge that he’s just not trying hard enough.
Let’s break it down extremely succinctly:
On a daily basis, with NO RELIEF, Jeremy deals with:
A huge discrepancy between his academic abilities and his output (Learning Disabilities)
That’s a HUGE load to be carrying…..and he’s been carrying it for 16 years. Its an incredible testament to his resiliency that he keeps trying every day. That he gets up and in spite of his worries, in spite of inaccurate and hurtful judgments, in spite of constant internal and external pressures…he gets dressed, packs his bag, says “bye mom, I love you!” and heads off to school.
On an aside, Jeremy has been looking for a job. He’s handed out a lot of resumes, but between a “special needs label” and a service dog….his job hunt hasn’t been very successful. We’ve heard SO many positive comments about how Polite and Courteous he is. How he is SO respectful and seems incredibly keen to work…..but nothing has translated to actual employment.
This past week, in the middle of this chaos, Jeremy got a job. He got a job because someone gave him an opportunity to show them what he is capable of. The feedback we got, was that he is probably the hardest working person they’ve had.
THAT……….THAT is who my son is. He IS hardworking. He IS responsible. He IS respectful. He is DESPERATE to please and to succeed. He WANTS to do his best……not just for you, but because working hard, being respectful, and doing your best are characteristics that we have consistently and tirelessly impressed upon him as critically important to his very being.
Down to his very soul, to the core of who he is…….Jeremy is desperate for connection….for relationship.
If you were to ask me what he wants most in this world…I would say that relationship trumps everything.
If you were to ask me what he struggles the most with….I would also say relationships.
This is where his disability comes into play…..
Would you get angry or frustrated if a person who was missing a limb couldn’t climb a ladder as fast or as nimbly as someone with complete functioning limbs?
Would you be short tempered with someone who had a cleft palate or was in a wheelchair?
Now I realize that every disability has people who are cruel/uncaring and judgmental…..but that’s not what I’m referencing here.
How about someone who is blind…….but you didn’t realize they were blind? You may be frustrated that they weren’t as fast and nimble at everything but as soon as you realize they are “differently abled”……more often than not, we have an “AHA!” moment and our compassion increases.
How often do we see a child having a temper tantrum in a public place and judge?
Or is our first thought, “oh I wonder what’s stressed that sweet little one to their breaking point?”
How often do we hear that a child in our child’s classroom “freaked out” and they had to clear the room; and judge that that kid is spoiled and gets away with too much?
Or is our first thought, “what perfect storm of physical/mental or emotional triggers overwhelmed him till all of his energy and ability to “hold himself together” was depleted?
Do we judge the behaviours or see the behaviours as communication?
It doesn’t matter who you read, Stuart Shanker, Ross Greene, Gordon Neufeld, Gabor Mate, Brene Brown or countless others……..CONNECTION is CRITICAL!
We crave connection and acceptance on a very deep level. Disconnection and rejection have a HUGE impact on humankind. Without connection, we are more easily succumbed to addiction, depression, self harm, etc. It’s hard to find the strength to carry on when we are alone. But when we know that we have the love and acceptance of those who care for us……..amazing things happen. We can shine and grow. We can reach and exceed our expected potential.
How many inspirational stories do you hear and read about where “someone believed in me so I believed in myself and accomplished great things? What’s at the core of those stories????? Connection. We are hard wired for connection.
Will you look for moments to connect, this week? Especially with someone who is struggling to connect. Reframe “behaviours” from “a terrible child” to a struggling child and ask Why they are feeling and acting this way and what is instigating the behaviours.
To see our children as struggling and not as defiant or problematic is the start of an incredible journey towards connection that will benefit you and I and the world..
I’m so tired…….I think I’ve been doing better and then something comes along and knocks me down so flat that I feel like any forward movement I’ve made has all been taken away and I’m right back down to scraping the bottom of the emotional/mental/physical barrel.
This week has really done me in. Between first days and lunches and anxiety and high school……it was all pretty overwhelming but I was hanging in there.
Today totally just knocked me over the edge.
I was originally going to take Jeremy out to the appt by myself, and then we had some issues trying to work out who was going to watch Judah and who would pick up Siah and I thought that maybe I might get out of having to deal with today (avoidance……awesome escapism tactic). Jon felt I really needed to be there.
Oh, I didn’t want to. It’s so hard. When your son doesn’t fit “the mold” neatly and nicely and attempting to diagnose the “puzzle” that is your child means that you have to fight with every ounce of strength that you have and even with some that you don’t have…….it’s tough. And after fighting last time and being so dismissed…….it was such a blow that I…..we….didn’t even really want to hope for this to work out.
And yet we want the best for our son and so we scrape together the courage to go to a meeting where we bare our souls and pull out every negative aspect of our son and of ourselves and of our families…….and lay it all out for someone to see and hear and sift through, in the hopes that they will be able to give us answers – or at the very least clues that will help us to help our child.
I sit there in these meetings and wonder how our genetic soup managed to come together in such a way that our son was given this……
ADHD, ODD, Anxiety, SPD and possibly ASD…..all mashed up together in one small child.
It’s SO much. It’s so much for us to deal with. It’s so much for him to deal with. It’s so much.
And yet, like with Angelica……..we make it as “normal” as we can. Bald is beautiful. Confidence is beautiful. And our brains are all unique and the things that make us unique make us so very special. We play up the incredible aspects and attempt to make the difficult things “just a matter of fact”.
But the truth is……it’s not easy. In fact, somedays it feels like a crushing impossibility.
We won’t know the results for a bit. I’m hoping for an Autism Diagnosis because there is so much in that particular diagnosis that makes sense and yet, I’m so scared to get my hopes up.
I want help. I’m tired. I’m tired of fighting. I’m tired of trying to be strong. I’m tired of carrying everyone. I’m just really tired.
To be honest, getting the diagnosis would feel like someone was validating just how difficult the past 12 years have been. Don’t get me wrong. I love this young man with every fiber of my being. Which is why I’m fighting with energy that I don’t really feel I have to give…….but it’s been tough…..really tough. And I’m tired.
Amplified Bible (AMP)
A Psalm of David.
1THE LORD is my Shepherd [to feed, guide, and shield me], I shall not lack.
2 He makes me lie down in [fresh, tender] green pastures; He leads me beside the still and restful waters.
3 He refreshes and restores my life (my self); He leads me in the paths of righteousness [uprightness and right standing with Him–not for my earning it, but] for His name’s sake.
4 Yes, though I walk through the [deep, sunless] valley of the shadow of death, I will fear or dread no evil, for You are with me; Your rod [to protect] and Your staff [to guide], they comfort me.
5 You prepare a table before me in the presence of my enemies. You anoint my head with oil; my [brimming] cup runs over.
6 Surely or only goodness, mercy, and unfailing love shall follow me all the days of my life, and through the length of my days the house of the Lord [and His presence] shall be my dwelling place.
This passage keeps running over and over inside of me. Different aspects of it hit me at different times of the day and the night.
The Lord is my Shepherd. He will feed, lead and guide all of my and our steps. I will lack for nothing. He provides a place for me to lay down and be at peace and rest. I can feel safe and secure, knowing that He has made a quiet, peaceful place for me to relax when I feel tired or overwhelmed. I can be still knowing that He is in control and caring for me. He refreshes me and restores me when I feel worn down and so tired and so very, very broken. He does lead me into places of uprightness and right standing with Him, because He loves me and Geli and us. Even though we may be walking through a very deep, dark valley and may feel like the shadow of death has touched us with it’s evil and destruction – I WILL FEAR NO EVIL. I will not fear anything because HE IS WITH ME, WITH HER, WITH US….every step of this journey. He will never leave us nor forsake us. He protects us and guides us and in spite of all of our pain, or hurt or confusion or anger – HE COMFORTS US! He provides for us in the middle of all of this garbage. In spite of all we have gone through, in spite of all we are are going through….my life is full of love and joy. Goodness, Mercy and His Incredible Love is with me every moment of every day and I choose to live within His LOVE and PRESENCE all of my life. Nothing shall sway me from this, not life nor death.
Angelica is on the list to get new knees. In all actuality, her shoulder is WAY worse than her knees, but she doesn’t walk on her shoulder. And so, from her standpoint, dealing with the pain in her knees is a higher priority.
I’m very aware of exactly where we are at, and we are taking the steps that are medically necessary to replace her knees, and her shoulder will be shortly behind that. We believe that there is SO MUCH GOOD that the medical profession can offer to help us out.
And in spite of all of that, I am praying for Angelica’s healing.
I would love if if you would stand with me and support her and us with your prayers.
I believe that….. “Where two or more agree concerning anything, it shall be done!” and so I’m asking for two or three….or many, MANY MORE…..to stand with us to declare healing for Angelica.
Looking at the reality……we need a miracle. Aside from the replacements…..that’s the only other possibility. I’ve seen the pictures of her shoulder bones and the left one has collapsed. There is no natural possibility for healing or regrowth outside of a miracle.
And so, I’m asking, praying and believing for a miracle.
I would like to invite you to join with Jon and I and more importantly Angelica as we pray and believe for healing and new bones for Angelica.
I realize that to some of you who don’t believe, this may sound crazy. And maybe, I’ve gone crazy….there has been a whole lot of stress over the past 2 years. But………in my mind, as much as it might be good to have knee replacements instead of pain and eventual immobility for the rest of her life……the best thing would be to have new, healed and restored bones. Until the moment that they cut her open to put new knees and other joints in….I will pray and ask and believe for God to work a miracle in her life and in her body. At this point, we have nothing to lose….
Angelica doesn’t finish treatment for Leukemia for another 6 months. The list for new knees has a 6-9 month waiting list….and so the timing works out well for her to be on the list starting now.
She starts physio and OT on Monday at GF Strong.
For those of you joining us in prayer, here is a list of things to pray about:
1. New, Healed Bones for Angelica. Currently they have said that her knees, shoulders, hips and elbows are showing signs of bone death….but we want everything in her body and mind to be healthy!
2. We are all feeling quite emotionally tired, fragile and broken. So prayer for strength and comfort, peace and joy.
3. Geli is so tired of feeling physically exhausted all the time. She’d like to have energy to be able to enjoy life.
4. Geli is starting physio and we want her to be able to build as much strength in her body as possible.
5. Prayer for sleep….restful, peaceful sleep for everyone in our family.
6. Strength for us all to be able to keep going on in spite of how tired and worn down we are feeling
7. Protection for our family that each and everyone of us would be safe and healthy
8. We have had so many things break on us recently…our microwave, my laptop, our toaster over, our scale, my breast pump, and I know there are more that I’m not remembering, but we’ve had enough…..this all needs to stop. It’s a drain emotionally as well as financially!
9. PEACE!!!!!! in every area of our lives and minds and bodies……for all of us.
10. Employment – Jon’s job is very uncertain right now. He is a contractor and currently working for a GREAT COMPANY, working amazing flexible hours and making enough to support our family. His contact is up as of March 31st and his boss has applied for his contract to be extended but the boss’s boss has not not yet signed off on rolling over the contract. Jon would love to actually get hired on full time at this company, with benefits and a regular salary, but even just a contract renewal would be amazing.
11. Mini-Vacation – Personally, I’d really love to be able to get away as a family. Somewhere not too far away, but where we can relax and just escape! I’m just gonna be specific and say that I’d love to be on a beach somewhere to hear the waves crashing and smell the salt water and feel the wind on my face, but honestly….any where would be nice.
Thank you for all your support. Thank you for your kind words. Thank you for your encouragement. Thank you for your prayers. We need them now, more than ever.
I lay beside her on the bed tonight, cuddling her…my arms wrapped around her while she sobbed and wailed as if her heart had broken. I held her and whispered quietly, my lips against her shoulder, “It’s okay to cry. Just let it all out.”
The sounds coming from the very core of her….so hurt and wounded and broken and tired…..so very very tired.
She cried until she was spent and then she lay, breathing jerkily, as she tried to settle.
We went to see the Rheumatologist early this morning. He gave us news that no one wants to hear. Especially not a child……
Double Knee Replacement!
Most likely looking at bone death in the hips and the elbow and who knows where else…..
Possibly hip replacement in the future…… who knows about the elbow.
He would need to look at the previous X-rays and we’ll probably need more in the future.
It’s a lot to deal with.
I’m not coping very well. She’s struggling. We are all struggling.
This is tough.
She’s looking at knee replacement surgery after treatment ends in 6 months.
She’s already feeling like Grade 8 and Grade 9 have been taken away from her by cancer and now to hear that grade 10 will be taken up with bone and joint issues…..
This just feels like too much.
For all of us.
We are hurting and wounded and broken and in the moment, it feels impossible to think about how we can possibly recover from this.
I try to put as many positive spins on this as I can. To think about those we know who have overcome great obstacles and even faced death and now are thriving, but in the moment……
It’s overwhelming and we cry…..
And we hurt and we wonder how we will carry on and yet…….we must!
We will get through.
Nothing will ever be as it were.
Our old “normal” is gone……never to be found again and we grieve. We grieve hard!
We must find a new normal.
It’s getting harder and harder to think about creating new normals.
It’s getting harder and harder to try to create new normals.