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.
This is not my first rodeo with social distancing. In June 2010, our daughter was diagnosed with Cancer and just like that, isolation became our new normal.
On Chemo, her immune system was compromised. We had 4 younger children and we all know how kids are incredible carriers and conductors of germs and viruses and basic filth. It’s like their super power. Anyhoo…..we basically holed up and all social life halted for the 2.5 years that she was in treatment.
There are differences between then and now. One, we’re all in this together. That’s HUGE. Do not underestimate how incredible it is to have others know what you’re going through. Two, back then we were fighting only for our daughter. Today we are fighting for our world. Again, knowing that you’re not the only one going through this situation is incredible for the mind, body and spirit.
2.5 years of isolation is a long time. It’s long enough for friends to move on. It’s long enough for you to lose so much of yourself in the monotony and loneliness that you’re unsure you if you will ever find yourself again.
I’m not some naive “Pollyanna” and my life is not in any way, all rainbows and roses. Social distancing and isolation can either destroy you or make you; and I fully believe that you have a say in how you respond and move forward.
I remember the feelings of helplessness and hopelessness that I felt back then. I remember standing in my living room, trapped in my home, with no end insight. I remember feeling so incredibly powerless and out of control. my only option was to hold on tight and ride this journey, until it was finished. I felt like I had no control and no power. I felt like a victim of the whole situation. I was miserable, scared and lonely.
I remember the day that I decided that I would reclaim every bit of power that I could. The sun was shining. The warm air floated in through the window. Geli and the baby were both sleeping and the other kids were occupied. I pulled out my camera to find something good, something beautiful, something that was full of life. The situation had taken so much from me, from our family. We were surrounded by the hardship and struggles ; but I was determined to balance the scales and shift my focus.
I couldn’t change the immediate situation but I could choose to look for and see the good things that were happening in spite of, or even as a result of the hardship. That was the day that I was reborn. I didn’t realize it at the time, but now I see it so clearly. It wasn’t an immediate change. It was a slow, gradual process but looking for the good. Searching for the light. Finding the joy even in the middle of the darkest times, was life changing for me.
It is a practice. It requires effort, at first; and then it becomes a part of you; a glorious, life giving, transformative part of your very being.
I’m not encouraging that you lie to yourself, or that you pretend that everything is perfect. BECAUSE IT’S NOT! These are tough times that we are living in. Acknowledging the difficulties and finding the joy are compatible.
What I am encouraging is a shift of mindset.
My kids and I are trapped in this house and fighting like idiots because they are anxious and uncertain; but I am so thankful that we have this time together and that we are healthy.
I didn’t get my complete order of food because of panic and hoarding and now I don’t have any orange juice or Mr. Noodles; but I am so thankful that we do have food to eat and that I have time to bake and make meals for my family.
I can’t go out and be with my friends right now; but I’m so thankful that we have technology that enables us to connect through the internet so I can still see and chat with them.
Even finding the beauty in little things, helps to shift your focus from what you don’t have to what you do have.
That tiny bud on the tree that’s just emerging shows us that everything moves according to seasons and where there is a winter time, that a spring will follow with new growth. That the desolation of winter is always followed by the glory of spring.
Food spilled on the floor by your children is so annoying but it also means that you have food for them to eat.
My windows might be dirty but the sunlight shining in, is glorious.
There is good. There is always good. Sometimes the good things are easy to find and sometimes you have search harder. What I know is that searching “the good” is life changing. I do find that if you can acknowledge what you see in a tangible way, it seems to imprint on your soul. Whether that’s making a list on a piece of paper or in a journal; taking a picture to save on your phone, sharing your photos or thoughts with a friend or posting on social media…..there is power in acknowledging the good. It encourages you and it encourages others.
This is why I choose Joy and why I encourage you to choose Joy, as well. There is so much benefit from a shift of focus and a bit of perspective, right now. We are all in this together.
She sat in her chair in a small room at BC Children’s Hospital ADHD clinic and calmly and quietly spoke to my child as if he knew and understood himself.
As if he, this frantic, frenetic child who couldn’t seem to slow down enough to eat or sleep or play appropriately or articulate well, could communicate the mysteries of his mind.
I don’t remember exactly what she asked or what he said. What I do remember is thinking to myself,
“She sees HIM. She really SEES him and in truly SEEING HIM; she’s giving him the opportunity to speak and to share from a space of being KNOWN. And in being seen and known, he has the permission and confidence to speak and be heard.”
This one moment is one of the many “pivotal” moments of my journey through parenting.
I remember the awareness hitting me so hard and fast that it was almost a physical impact.
My child, who I thought was an impressionable, immature being – a chaotic, unsleeping, hyper, frustrated, frustrating, exhausted and exhausting person……
I was shocked to find out that even at 10 years old, my child had insight, wisdom and knowledge of what he was feeling, dealing with and going through AND he could communicate that with us , even though it seemed he was only reactionary and impulsive.
I remember him sharing something profound about the way his brain worked, how his body and mind felt; and what he wished he could change.
I remember looking at the Dr incredulously while she carefully wrote down a few notes and thanked him for his input. She had a few suggestions for him and us. She spoke to him like his thoughts really mattered. Like he was “the patient”. Like he had some say over his life.
She wasn’t ever patronizing. I truly believe she saw and heard her patients and really believed them and cared about their input.
This moment changed my life forever. Jeremy was 10 years old when we met Dr. Jokhani and I am forever grateful for her care and support of him; but the impact of this encounter radically changed my understanding of how we interact with our kids.
Too often, we think or assume for them. We assign them thoughts or words based on what we see. But what we see, what they feel, what they perceive, what they know and if they have suggestions, desires or wants gets laid aside.
I’ve been asked how it is that my kids seem so self aware and insightful. How I’ve taught them to be able to share so eloquently? Is there something special about them?
The reality is that I’ve not taught them anything except maybe to trust themselves. Too often what we need to do is JUST ASK and then WAIT! We need to really listen to what they say. Listen to truly understand.
As an example, when Jeremy was asked to share what it felt like inside of his brain when he was at school; he explained that it felt like his brain was moving so fast that he couldn’t catch any of his thoughts. It felt like everything was buzzing so loud.
But when he took meds……everything got quiet and slower; and he could hold one thought until he wanted to put it down.
It might sound childish and simple, but it’s a brilliant explanation of the ADHD mind both on and off of a stimulant.
Mind you, he did all of this explaining, with his back to us while playing with LEGO.
Our children are going to share like children.
Will we stop long enough to ask them questions?
Will we listen long enough and with open enough hearts and minds to be able to really hear them?
Can we trust them to know themselves?
Will be give them opportunity to make a mistake and to teach them that mistakes are just a part of learning?
Can we give them the safe spaces to practice communication and advocacy?
Will we allow and champion opportunities to practise this skill?
I believe that we, as a society, win when we teach our kids self awareness. That we win when we teach our kids to self advocate. That we win when our kids believe that they have a voice worth listening to – when they believe that they have value and worth. That we win when our kids believe that they are valuable not in spite of who they are but because of who they are.
I’ve seen this play out hundreds of times with my younger sons…..starting at early as 3-4 years old.
Our kids are never too early to be heard, seen and known and loved.
I’d love to hear about a “pivotal” parenting moment for you?
“If I’m being honest with you, I could care less what he learns as far as academics or what his grades are.”
With equal parts liberation and hesitation, earlier this week I shared this statement with my child’s teacher, case manager and support staff.
I don’t mean that I don’t want my child to have an education. I don’t mean that I don’t want him to learn.
But….at this time, I care more if he feels safe at school. I care more if he has a desire to learn. I care more that he learn to confidently advocate for himself. I care more that he learn to communicate respectfully. I care more that he learns self awareness and self regulation skills. I care more that he learns to confidently interact with those in authority, and with peers. I care more that he finds his voice. I care more that he believes in himself. I care more that he has empathy for all. I care more that he eats. I care more that his digestive system is functioning smoothly. I care more that he gets enough sleep. I care more that he gets enough exercise.
It’s not that I don’t care about his education. I just have SO MUCH MORE that I care about. There is so much that a typical child would learn by osmosis, by watching and listening and absorbing; those seemingly simple things….they have to be taught to my child. Over and over and over……and so while I may say that I don’t care about academics……what I truly mean is that it’s just not as high on my priority list as all these other things.
I wonder what life would look like if my biggest worries were what grades my kids were getting; or if “grades” were even on my radar.
But that’s not my life and so I don’t dwell on that. Partially because I just don’t have the time or energy to; but also because it doesn’t serve me to hold that ENVY.
It all comes down to priorities. I only have so much energy and I just can’t hold “it all”. So I pick and choose what is most important to me.
Teaching my kids to be loving, respectful, compassionate, hard working and contributing members of society who have mercy and grace for themselves and others…..that’s my goal.
I try to remind myself of that every time I feel caught up in “what we’re NOT doing” or in the fact that we aren’t “typical“.
It all come down to priorities.
I’d love to hear what your priorities are or what you want them to be or wish they could be. Do you follow societal norms because you want to or because you feel you have to? Would you do something differently, if you felt you had the freedom or power to do what you wanted to?
Jude had climbed into bed with us, at some point last night. First thing this morning, He opened his eyes, looked at me and said, “I just can’t go today.”
Like I mentioned yesterday, we have a kids day camp this week. It’s fun. It’s amazing. It’s epic. It’s theme is “Power Up”. They do Fortnite dancing, and crafts and have snacks and an epic water day. It’s AWESOME!
And in the last two days, my kid has used up any and every bit of emotional and mental reserve.
So, I declared today a Mental Health Day and we did nothing taxing; and only things that we wanted to do.
I have pretty firm opinions on parenting. I don’t like to put up with any garbage or judgement from others. It makes me sick when I see children being treated as bad or devious or evil. I do understand that there are some children who have been so hurt that they need extraordinary help and support; but so many children are spoken to as if they aren’t real people.
Real people who have rights, deserve dignity and autonomy. Real people who deserve respect and kindness regardless of whether they are non-compliant, misbehaving or just young.
But for all of my opinions, I’m still human.
I grew up with old school thinking that disrespects children. Thinking that says that I’m the boss and if I’m just tougher or more authoritative or just force a child to do something that they will get over their issue. Their issue, that isn’t legitimate anyway. They’re probably just faking it, in the hopes of getting away with something.
I don’t believe that line of thinking for one second. And yet, within the stress and chaos and exhaustion of parenting high needs kids, there are times that my resolve falters. I question my moral compass. I question my parenting skills. I question my ability to know or think or believe anything.
In that space, I allow the worry, the questions and the self doubt to surround me, for a moment, before I shake them off. Those thoughts don’t fit on me. I can’t wear them with pride, courage or confidence
I believe that children, innately, want to succeed and do well.
I believe that if a child is not succeeding and thriving; that is not because they are intentionally misbehaving. They are struggling.
I believe that children try to do their very best and if we feel that their best is some how “missing a mark” then we must step along side and support them, in ways that are meaningful to them.
I believe that behaviour is communication and as the adults, it’s our job to detect what they, the children, are struggling to put into words and to help them…..not judge, shame or criticize.
I believe that our children should run to us when faced with problems and not try to hide from us, out of shame and guilt. It’s our actions, words and reactions that reinforce those beliefs and actions.
So in this moment of humanity, when I question my ability to parent my child, to help him to be resilient, to help him find his strength and his voice, to help him find his way in this world knowing that he is valued and loved and capable…….I pause.
I remind myself of what I believe and why I believe it.
I remind myself that it’s okay to not be okay.
I remind myself that taking a Mental Health Day is a gift and not a punishment.
I remind myself that I’m teaching my children invaluable life lessons by honouring them, respecting them and teaching them to be in tune with their needs.
I remind myself that this season will not last forever.
With my humanity faltering, but my beliefs unwavering, I carry on; doing the best that I can, in this moment and knowing that it’s okay to not be okay.
It’s Summer time and I have memories of VBS in the local churches in our community. I remember sweaty hot rooms and making macaroni art, singing songs and snacks! I remember memorizing verses for stars. I LOVED to win the stars. Not to compete against others but to see just how many I could get. Summer camps both short day camps and overnight camps were a highlight of my summers.
I just picked up my 9 year old from camp after he bolted. He just ran away.
Jude deals with Anxiety and Trauma from living with Siblings with Autism. Life can be very chaotic, unstable and uncertain.
He struggles with doing things that seem like they should be fun; normal “kid” things And as his parent, I feel like I’m constantly balancing accepting where he is at and encouraging him to stretch his wings. I’m constantly balancing his emotional and mental capabilities and trying to encourage growth without wearing him out completely.
As his parent, it’s exhausting. Either I’m doing activities with him (like Grade 3 or Summer Camp) which means that I don’t get anything else done. Or I’m trying to encourage him to participate, which often means I’m hanging around close by; still unable to take care of other responsibilities. Or we stay at home and avoid “outside activities” and I can usually get some of my responsibilities accomplished.
Sometimes, he needs the complete break so he can recharge……like an older rechargeable battery that can only hold so much charge and takes longer to absorb the charge. He wears out easier than typical kids and requires more time to recharge.
Going to a high energy camp with a LOT of kids is exhausting so why do we do it?
It gives him another opportunity to practise and grow and to see how much stronger he is compared to last year.
It’s also SO important to live in community. We were not created to be alone. And even though it may seem easier to do it alone, it’s not. Loneliness is soul crushing. We are built for love and acceptance and interaction.
So even though it’s hard and awkward and too often we feel judged by people who don’t understand or “get it”; we believe in the value of community and so we do our best to connect, in ways that are meaningful for us, and yet don’t overwhelm or wear down us down.
I held back tears when I picked my son up. Tears for how hard it is for him. Tears because I’m exhausted. Tears because of shame. Tears because of guilt.
I told him I was SO excited to see him. And we carry on with our day.
The next time you see a kid bolting, understand that there’s a good chance the child is panicking for some reason.
Realize that they need support, understanding and help.
Recognize that kids do well, when they can.
Recognize that behaviour is communication.
Recognize that when kids are in panic mode they are more likely to “act” than “speak” and it’s ups to us, as adults, to lend our calm and to not add chaos.
Recognize that you can be a part of the solution or you can add to the problem.
Recognize that the child and their parents, most likely, have limited emotional/mental/physical resources in reserve.
Recognize that you can be a life line in both the child’s and the parents life.
Recognize that Shame and Blame help NO ONE!
Recognize that “villages” and “community” are SO desperately needed.
I don’t know if it’s the loneliest road but being a parent of a special needs or disabled child is definitely a tough road to travel.
Gratuitous picture of Mac because why not….
I’m not talking about my child’s journey, at this exact moment. I’m talking about my journey as a parent of a disabled child…….multiple children to be exact.
I was talking with another parent this morning. It feels so dishonourable to admit that parenting a special needs child is hard because you are supposed to love and cherish and champion your children.
Which I do!
But I also spend a huge amount of energy advocating on their behalf. Unless you live this life, you really have no concept of what it’s like. This is one reason that I share so openly about our life; so that those who have no clue, can have some clue, if they want, about what it’s like to live with and parent disabled kids.
I also share so that other parents who are going through similar experiences can know that they are not alone. I know this because I have many parents share with me……..”I thought I was alone until I saw your post and then I realized that I’m not alone.”
Too often, we believe that we are the only ones going through this. And it’s not until someone is brave enough to say, “This is what I’m going through and it’s ugly and messy and beautiful and courageous all at the same time.” that we realize that others are on this journey with us and we are not alone.
And that is the beauty of community.
We all need community. We need to know that we are not alone. We need to know that others have walked the paths that we are walking. We need to know that others understand the exhaustion and the frustration and the pride that we feel for and with our children. We need someone to understand that we live within chaos and that there is still beauty within the chaos. That growth still happens within the chaos. That love grows within the chaos. That life continues within the chaos.
This is why I share. This is why I lay my soul open so others can draw strength and courage from the knowledge that they are not alone. That there is a connection within the loneliness and isolation of parenting special needs kids.
We all want to be loved and accepted, not in spite of who we are but because of who we are.
I see you.
I recognize you.
I validate you.
You are worthy of love and acceptance.
You are more than all you “do”.
You are doing your very best and that’s enough, even if it doesn’t feel like it.
I got new shoes. Aren’t they pretty? When I went to Peninsula Runners years ago, the stock for size 10 womens runners was pretty limited. There wasn’t a huge selection and I usually ended up taking whatever they had that fit right. This week, I tried on 5 different pairs in all different colors and chose the ever classy black runners. Ha!
I had a great run yesterday. I kept the same paces for the first half and the second half. Typically I run slower in the second half of my runs. So that was a win. I also ran a little faster and a little further than Thursday. Awesome right! About 3/4’s of the way into the run, I thought to myself,”I’m really doing this. I’m getting stronger. I’m getting faster and I’m not even feeling like a fish out of water gasping for breath. I’m actually DOING this!“
My next immediate thought was, “Obviously, you’re not trying hard enough. You’re not REALLY giving this your all. If you were, you would be exhausted and dying for breath.“
WHAT KIND OF GARBAGE IS THAT!!!!
And WHY would I think that was an okay way to talk to myself?
I can’t fathom the audacity it would take to say that to an adult and I can’t fathom the cruelty it would take to say that to a child. And yet, I’ve talked like that to myself for as long as I can remember. I have no idea why I would talk to myself like that or how I ever received the message that it was okay to talk to myself like that; because it’s not.
And yet we do it all the time. We down play our accomplishments. We deflect praise. We focus on the things we struggle with instead the ways we are improving. I don’t know if its a false humility thing or a fear of pride. But I’m done with it all.
That doesn’t mean that I’m all fixed and wont hear those voices and those words anymore, but what it does mean is that I hear them and recognize them for what they are.
I hear the fear of failure. I hear the fear of rejection. I hear a small voice who is desperate for love, acceptance, validation, success, approval…….
I choose to hear that voice, acknowledge the fear and champion myself anyway.
Because today, I know that… – I am stronger. – I am healthier. – I am getting faster and going further – I am amazing. – I AM ACTUALLY DOING THIS!
I mentioned previously that I’ve had an on-again/off-again relationship with running since I was a teenager.
Over the years, I have spent way more time in the “off-again” than I ever have in the “on-again” aspect of running.
I’ve also had self esteem issues, body issues, worth issues……let’s just leave it at “I have a lot of issues and my therapist need never worry about a lack of issues to work on.“
The last time I spent any amount of time running was in 2013. We were on the tail end of the “Cancer Years” and I’d just had a miscarriage for a completely unplanned pregnancy. This happened shortly after I was diagnosed with Anxiety and started on meds. The meds I was on were not optimal for early fetal development and so I quit……cold turkey.
I was in rough shape, physically, mentally, emotionally. I was in really rough shape. In an effort to run away from my problems or maybe to run towards my feelings……I started running “again”.
It was HELL.
I had no reserves to bring with me and while the running provided me with some short term endorphins. It just couldn’t sustain it.
Fast forward to 2017…..that was a year of trauma. It felt like all of my kids had HUGE issues all at the same time and I was drowning under the weight of it all.
My only instinct was to survive. I made it through 2017 and 2018. I have a lot of clarity now about the pressures we place on ourselves and how unkind we are to ourselves. But those are posts for another day.
At the end of January of 2019 – this wasn’t a New Years Resolution– I was in rough shape. I’d been extremely sedentary. I was crazy busy but a large part of my life was sitting. I didn’t exercise and it felt like my heart was going nuts. It would race and slow down and skip beats and basically just make me feel horrible and totally paranoid.
I decided to start walking. At first, a slow walk for a short period of time destroyed me. I was so frustrated because I knew where I had been and this was not even half of what I had been capable of doing. But I was determined to get healthier; so I kept going. I tried to walk at least every other day. It was slow going but I started to see improvement.
I wasn’t as sore after I walked. I wasn’t as out of breath after I walked. My heart rate wasn’t through the roof and it was steadily lowering. I was able to walk faster and for longer distances.
One day in March, I decided to run for a moment and just like that, I felt like I was back at the end of January, just about dying from the effort of it all.
I wish I written down my thoughts from the beginning of the year until now because it’s been quite a journey. But I’d rather start now, and be able to look back in a year and be so excited at the progress.
I want to lose weight because I’m larger than what I should be for optimal health. BUT health is my goal…..not skinny. I ran for 20 mins without stopping on Tuesday. Okay! I was slow as a turtle but you try schlepping 225lbs around for 20 mins and report back.
I ran again today. I have these delusions that I’m going to be able to just break my previous distance and time easily. Uh ya…..that’s not my reality.
While I did go a little further today, a little faster……it was minuscule compared to what my goal is.
I was talking down to myself and feeling bummed out and then I said to myself.
“This is a win. You went for a run. You were a little bit faster and you went a little bit further but regardless, you did it! And that’s a huge win.”
I’m trying to be gracious with myself. I’m trying to change the way I talk to myself and about myself. I would never talk to anyone or about anyone the way that I do to myself. It’s just not cool and I’m working on loving and championing myself; because I’m worth it.
You know, I never thought that signing up for a race would make a difference BUT….having a goal makes a HUGE difference. Why would I think I was any different than anyone else? Goals are amazing and incredible to have.
Knowing that I have the race, pushes me to stay consistent with my practice. It pushes me out of my comfort zone, in an effort to achieve more. It forces me to dream and plan and hope for what I want. It requires me to be accountable not out of shame but out of determination.
When the voices of fear whisper “What if you fail?“
I respond, “There is no failure; only a beginning.“