46

Dear 16 year old me,

You’re gonna be okay. These overwhelming feeling of insecurity and intrusive thoughts are part of a life long anxiety disorder, probably a chemical imbalance and you will eventually figure that out. You’re not broken or awful.

It’s okay that you’ve not had a boyfriend, yet. You’re going to find an incredible boy who will grow up to be an even more incredible man. You are gorgeous, smart and powerful. It’s okay to be a strong woman. Your strength will serve you well in the future. You don’t have to pretend to be something you’re not and who you are, is incredible. You’ve got this!

Dear 26 year old me,

3 kids, eh? You’re a rockstar!

That littlest one you’re holding?!? He is going to teach you more than you ever imagined was possible. You are going to learn patience and compassion, communication, persistence, gentleness, love, and so much more.

You’ve got a lot of life ahead of you and lots that I wish I could protect you from. You’re in for a world of heartbreak, trauma and devastation; but the flip side of all of that hurt is the most glorious awareness of grace and mercy. You are going to learn to love, have compassion and care for others in a way that will rock your world, in the best way possible.

That strength I mentioned earlier, it will do you well as we navigate these dark days ahead. You will survive. I promise. Even though it may feel like you could die from the pain and heartbreak, I can promise you that you won’t. You’ve got this!

Dear 36 year old me,

Can you believe that we have 5 incredible kids? Those 2 miracle boys born after all those losses…..AMAZING, eh? It’s a lot of work, but this second round of parenting is so much easier than the first round, isn’t it?

You thought the losses were tough but you’ve got another decade of unfathomable heart break. Between 3 years of Pediatric Cancer treatment, the physical, mental and emotional fallout from the treatment, mental health issues, trauma, school issues, and so much more – this is the decade that is going to really test you. Even though you will feel that you are walking a fine line between surviving and breaking, you will survive.

This is the decade that you learn just exactly how strong you are. Even if you wish you weren’t as strong because you’re exhausted and sometimes you wish it would all just go away or stop – you’ve got this. One day, one hour, one moment, one breath at a time. Breathe girl, breathe! This season won’t last forever.

Dear 46 year old me,

I truly wonder what this next decade will bring. I’d like to believe that the pain of the previous 2 decades will lighten up some. It’s been intense enough to last a lifetime. But the gifts that have come along side the pain have been glorious. In spite of all that we’ve been through, we’ve had the most incredible life and it’s not over yet!

You are wise! You are strong! You are brave! You are beautiful! Trust yourself! Trust your instincts! Believe in yourself! Believe that you have a voice! Believe that your dreams are valid and important! Believe that you can affect positive change in the world! Believe that you are a strong and powerful women. Know that your strength is one of your super-powers. Keep going to counselling! Keep reaching for inner healing! Have patience with yourself! You are a work in progress. You’ve got this!

Procrastination

Do any of you use “procrastination” as a tool?

I hired cleaners, at the beginning of the year, to come every other week and do the “cleaning”. (I’d like to pause and say that this has been the absolute best gift that I’ve given myself this year. I like a clean house and the rest of my family is ambivalent enough to not help out as much as I would like. So rather than overextending myself to do it or bagging at everyone, we make sacrifices so this can happen.) This means that every other weekend, we spend a day tidying our house for the cleaners to clean.

I don’t “clean” the house; I just clear it of all the daily living crap so they can apply soap and water to all the surfaces.

I need to be tidying right now; but I’m not highly motivated to do so. So I’m sitting in my bed, polishing off a piece of birthday cake, playing phone games, surfing social media and apparently writing this blog post.

I’m not worried because I know that as the day winds down I will have a shorter window of time to accomplish what I need to and I will kick it into high gear and “git-r-done!”

And then I wondered if any of you do this too. I like to think of it as using “procrastination” to my benefit – like it’s a power boost in a video game.

I’m probably just counting on the rush of adrenaline to help me do what I don’t want to do; and I bet there is a much “healthier way (emotionally and mentally) to motivate myself but it is what it is!

So, do you do this, too? Or is this just me and my unique brand of weirdness?

Self Worth and Self Esteem

Why do I struggle with not feeling worthy?

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.

why?

Why I Choose Joy

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.

There are studies about the practice of gratitude rewiring the brain. I didn’t know this at the time, I just knew that practicing gratitude was like air to my drowning soul.

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.

With my Humanity Faltering….

We took a Mental Health Day, today!

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 okay!

Parenting PTSD, the Educational Version

I recently received an email that sent me into an absolute tailspin.

I’ve just realized that with all the info blacked out, this email could be for any one of them, because all 3 of my boys have the same initials. All 3 have IEP’s and “school teams”.

Do you see anything wrong or even remotely threatening or negative about this email?

Nope! Neither do I and I asked for a meeting. Regardless, as I lay in bed, my heart started to race and the thoughts in my head sped out of control.?

What if they are upset with my child?
What if they are upset with me?
What if they are going to tell me that it’s too much effort to support my child?
What if they chalk his issues up to bad parenting instead of trauma?
What if they judge me?
What if they are tired of trying?
What if they put it all back on me to solve and fix?

And the thoughts spiral out of control until I’m choking back the tears and barely holding myself together.?

{I know that these are “what if’s….” and I really don’t want to live in the world of “what if’s….” because….what if it all goes amazingly well? And really what does it matter if someone thinks poorly of my child. I know the truth. But truth doesn’t always vanquish the trauma…..at least not right away.}

This is Parenting PTSD, the Educational version.In the past, I’ve had administrators and teachers say those things about my child. I’ve heard those things said to me, said about my child, and said when it was presumed that I wasn’t listening. To hear those things, destroys a piece of your heart, mind and soul. It breaks your ability to trust, to really even hear at all, let alone with an open heart and soul.

It is devastating to hear that people feel your child is too difficult, too much effort, or just not worth the effort.

While I know that currently, we have people on our teams who actually care for my boys, that past wounding, that TRAUMA is still there. It’s runs deep and it excruciatingly painful.

As a parent of a child with extra needs, you are already soul crushingly weary but usually with no real option or opportunity to rest. You are almost always in fight or flight mode. If for some blessed reason you aren’t there, it only takes one second to be activated …..sometimes when it’s not even necessary.

I’m extra exhausted right now and pretty close to the edge of tears, most of the time.

I’m not alone in this, either. There are thousands of parents, with kids who have challenges, who feel traumatized from dealing with the people within the education system.

We are desperate for people to truly see our children for the wonders that they are. We are desperate for someone to share all the good and amazing things that they see about our children. We are desperate for people to look beyond the challenging behaviour, to see what our children are saying, to listen and really hear their hearts. To champion them into becoming all they they can be and even more.

We are desperate for people to see our children as human beings; and as valuable, worthy and important as the typical kids.

On our end, it takes the courage of showing up and being there even when you don’t know if it will make a difference or if you’ll get hurt again. It takes vulnerability to share your hurts, your ideas, your successes and your failures.

If you work within the education system, know that you have parents and children who are incredibly triggered right now.

show love,
show compassion,
show mercy,
show grace,
show acceptance.

Invest in relationship.
Foster communication.
Build trust.
Be Respectful.
Be a life line.

And the benefits will be innumerable.

But recognize that there is Trauma and it’s not going anywhere soon.

Be a part of the solution, not the problem.

Pain, Coping and Recovery

Today is a special day. Five years ago today, my sweet Xandra decided to make a change in her life.

She told us that she wanted to talk to us. We knew she’d been struggling for years with depression and anxiety.

It’s hard not to when your sister was diagnosed with cancer, your baby brother was born, your brothers have autism and you’re unsure how to deal with it all. You don’t know if you should bear the weight of everything because your mom and dad are overwhelmed. You don’t want to burden them any more, but you still have needs.

Xani told us that she’d been cutting for a year. That she’d been using this self-harm as a way to cope and alleviate the emotional/mental stress that she had been feeling. She showed us her arms and her legs. She wanted help to stop cutting and knew she couldn’t do it alone.

I was in shock.

She was so badly wounded. Her physical body was a outward representation of how wounded and how much pain she felt internally.

As a mom, it’s a horrible place to be in. To try to hold it together and be loving and compassionate and understanding.

To offer unconditional love and acceptance to the hurting person in front of you, while at the same time feeling absolute helplessness to know how to move forward.

Wondering how to get your child help, to give your child help.

Feeling terrifying rage at the person who mutilated and hurt your child, all the while knowing that it was YOUR child who did this to themselves. Knowing that they must have felt unimaginable emotional and mental pain to have even considered this as an option.

The dichotomy of emotions was huge.

I’d love to say that we had a well thought out game plan. That we rocked her recovery. But the the truth is……this was Xani’s journey.

She determined that she didn’t like where she at and that something needed to change. She reached out for help. She was open about the pain she had been and was currently experiencing. She recognized and identified the harmful things she was doing to cope with and escape her pain. She chose to walk away from those harmful coping mechanisms. Did she struggle on her road to recovery. Absolutely! But she reached out for relationship and community when she felt tempted to cut. When she felt the pain and stress rising up internally – instead of hiding and coping on her own, she reached out. She brought her feelings out into the open and allowed us to walk with her.

We……..we were there. We were available….to love, to accept, to champion, to talk, to just BE there.

Today, I’m SO VERY thankful.

I’m thankful for so many things. I’m thankful for this incredible woman that I have the honour to call my daughter. I’m thankful for courage and her strength and her vulnerability. I’m thankful to be on this side of this journey. I’m thankful for the perspective that this journey gave me. I’m thankful for the opportunity to love and accept. I’m thankful for the knowledge that we as people experience pain and look for ways to treat the pain and cope; often how we “cope” is in unhealthy ways….but that doesn’t make us bad or unloveable or unworthy; it just makes us human.

We are all worthy of love and acceptance; not in spite of who we are, but because of who we are.

ps. I have Xani’s permission to share about her journey. But I’ve also shared my perspective of it because this is my life, my journey and my perspective.

No Shame

It’s been over 5 years since I started taking meds and my life radically changed for the better.

I grew up with anxiety but I thought that everyone felt like me, thought like me, lived and struggled like me. I had no idea that it wasn’t typical to overthink everything and worry about everything and wonder what everyone thought of you and if they thought you were weird or stupid. I thought it was normal to try to do everything 100% perfectly and then after an event or meeting or get together, to go over everything you said and did and muse about how someone might have interrupted or taken what you said in a negative way; and to totally beat yourself up for just not being good enough.

I thought everyone was really good at life and that I just needed to try harder. I thought I just needed to be more confident or work harder to be perfect so people wouldn’t think I was weird or strange.

I sort of coped. I’d probably say that I survived my childhood and teen years…..even into my married life. And then we had some financial struggles, work issues, church issues, a stillbirth, secondary infertility, more work and financial issues, parenting issues and then we added in a few years of childhood cancer and special needs.

By that point, I had zero reserves left to even survive. I hadn’t slept more than a few broken hours in over 3 years. I was exhausted and SO lonely. I was broken. So very broken.

In the past, I’d had health care professionals ask if I felt I was depressed. Depression never seemed to fit, especially when I looked into it and read up on symptoms. I didn’t feel depressed….but something wasn’t right. I felt like it took every ounce of effort I had to just survive and even then, I was doing a lousy job of it.

In 2012, I was looking into what anxiety was, for someone else, I came across an article and checklist and I could check every single box. I booked an appointment with my Dr, took the list in and said, “I have anxiety. I’ve struggled with this my entire life and had no idea it was an actual thing. I check every box on this list. And this is the first time, “I” understand why I have struggled and what I have struggled with.

I asked for meds and I truly feel that was the beginning of me “actually living” instead of just surviving.

I spent the next year, feeling more and more calm and still within myself. It was unreal to me to feel my thoughts settle and for the anxiety to quiet. I finally felt like I wasn’t “fighting” myself all of time. I had the opportunity to breathe and to replenish and to recover.

Taking meds, understanding anxiety, getting counselling and talking about it have been life changing for me.

I have (with my Dr.) tweaked my doses over the years, sometimes increasing, sometimes decreasing; and sometimes switching things up. Always with the goal of having me be my best self and living my best life.

If you are thriving without meds, awesome; but if you are struggling, don’t ever be ashamed or feel like you are a failure for needing and accepting help.

I still struggle. I still have anxiety. Sometimes it’s brutal; but most of time, I’m doing well.

I may need meds for the rest of my life and I’m okay with that. If it means the difference between enjoying life or barely surviving, I’ll choose enjoying life every time.

I will never be ashamed of needing help, asking for help and accepting help. I hope you won’t be either.

Today, I am so very thankful for this handful of meds. They have changed my life.

What are you thankful for?

Living in “Not Enough”

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

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

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

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

I’m trying really, REALLY hard.

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

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

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

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

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

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

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

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

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

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

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

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

Definition of disabled

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

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

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

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

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

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

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

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

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

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