My Autistic Daughter

Today is my Darling Girl’s 22nd Birthday. I had BIG PLANS to post this earlier today but true to our chaotic lifestyle, today was chaotic.

Jude decided that he wasn’t going to school, so I attended Grade 3…..it was about as awesome as it sounds. We came home after recess and then I had to leave for an appointment with our psychiatrist regarding Jeremy moving towards adult supports. It was epic. As soon as we got home from that, I threw dinner in the oven for Gelica‘s Birthday’s Dinner and then ran out for a chiropractor appointment. We’ve finished dinner, sang happy birthday and now I’m banging this post out.

I asked Geli to share a bit about living as a autistic women. She self-identifies as autistic and I guarantee that if we knew more about how Autism presents in girls that we would have had her tested, when she was younger. In hindsight, there are SO MANY indicators but we just didn’t know. It explains SO much and would have been incredibly helpful information as we parented her.

Without further ado, to continue on with Autism Awareness Month….here is Gelica sharing about what it means to her, to be Autistic. It’s not a bad thing, or something to hide or be ashamed of. She’s incredible just as she is. She just happens to have a brain that processes things differently than a typical person’s brain…..and that’s okay! In fact, it’s fantastic!

I am Autistic.

It’s not something I usually lead with.

If I do, people are generally confused. There’s the whole “you don’t look/act autistic”, “don’t worry, I don’t think you are”, “are you sure…?” statements. I’ve gotten quite a few of these, and I only started self-diagnosing, like, 2 years ago.

But I am. It was a puzzle piece I didn’t know I was missing. But once I got that piece, so many things started making sense.

I look back at my childhood, and I just remember being a confidently quirky kid. I knew I was different and weird, but it’s who I was. So I ran with it.

But knowing that I’m autistic has just shifted a few things into clearer focus.

Horse Obsession

Like how I could wear the exact same outfit, every day, for almost 2 years of school.

Or how I was reading grade 11/12 books in grades 2 and 3. Which is frustrating when you go to a traditional school that filters what it puts in their library and you end up with 5 books in your reading level; or you can take three Geronimo Stilton books home and finish them all in one day and have to go back the very next day, because you can’t take out more than 3 books at a time

Or how I was obsessed with horses. (Mentally.) They used to actually frighten me a bit in person as a child

If you ask my mom, she has a whole list of things that actually make a lot of sense when you look at them through Aspie glasses.

I think being autistic played a huge part in me being able to stay caught up in school while going through cancer treatment

I can remember in elementary school, asking the teacher for more homework. I believe my mom even has video proof. But I can remember the homework I was getting wasn’t ever really a challenge. I had heard the information when it was first taught to us, so I didn’t understand why I needed to regurgitate the information onto worksheets. And so, I didn’t put any effort into making sure the worksheets were correct, so the teacher had no proof that I deserved more challenging homework. I was told to put the effort into the work I was being given, to aim for 100% if I was so smart. But I figured that was wasted effort, and so I just continued on with the boring homework.

But, because I wasn’t challenged or moved up a grade or anything, I was in a decent spot to teach myself grade 8 while going through chemo. In fact, I taught my tutor math, so she could teach her other stuck-at-home students

Granted, the school only gave me the bare minimum of all my coursework, and I don’t know how much of any of it actually counted towards the school barely passing me through grade 8. But I had done enough work that when I returned to school, it didn’t take too much extra effort to catch back up and raise my grades back up to almost A’s.

Currently, I think the biggest thing that discovering I’m autistic has given me, is the information.

I have an explanation.

For my introversion;
for my small-talk aversion;
for the way I think; the way I communicate;
the way I process;
the way I experience emotions and empathy.
It explains why I can not be a receptionist, but why I am amazing at my current job.

I don’t mind coming to this conclusion in young-adulthood. I think if I had been diagnosed as a kid, I would have been challenged more in school, and maybe moved up a grade. I would not have been able to keep up with my class through chemo, then.

But the one thing I think I did miss out on, was a more serious effort to teach me social skills. I seemed to always have at least one friend. But as a kid, I put no effort into making new friends. People came up to me, and made me their friend (and then they were stuck with me). So I pretty much always had someone to play with, but it was never intentional on my part; I would have been fine to sit and read by myself, honestly.

When I finished with cancer treatment, and re-entered society, it was a bit of a culture shock. I had been diagnosed as a pre-teen, when I was most upset about not being able to join a baseball team, because games were on Sundays and my parents were assistant pastors. So when I got back to school, and all that the girls were interested in were boys, make-up and grad dresses; I could not have cared less. But there was suddenly this huge, noticeable divide between myself and all the other students my age. And I suddenly actually felt like I was different.

I spent the rest of high school trying to figure out exactly how and why I was different. And nothing seemed to click just right. And forcing me to go to the church youth group was not going to suddenly fix the problem.
What I’ve come to realize, is that I was never taught social skills. I was never taught how to make friends. So now, as an adult, the one thing I wish I could go back and change, the one thing that might have made an earlier diagnosis more worth it, would be the ability to make friends. Because learning these skills as an adult, is really really hard.

I don’t know if I’ll go through with getting an official diagnosis. I’m still contemplating that. But I definitely am Autistic. And I am so thankful that I now know.

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.

Perspective

Challenges are what make life interesting. Overcoming them is what makes life meaningful. Joshua J. Marine

We’ve had a fair number of challenges in our lives. Enough that, I had to make a choice. I could allow the sorrow and despair to crush me. I could surrender to the devastation and lose myself…….or I could choose to live and see the light regardless of what was happening around me.

I think this is one of the reasons that I resonate so strongly with Leonid Afremov’s paintings. There is such depth and even darkness within the paintings but there is light everywhere; and it’s glorious. It glows from within the scenes.

That’s what I want my life to be. Regardless of how dark a time is, I want the light to shine. I want to glow brightly whatever the scene around me is. I want to see the light shining and reflecting in the darkness. I want to BE a light shining and reflecting in the darkness.

It’s easy to see the light when it’s bright, but I choose to look for the light when it’s darkest out.

I refuse to allow hard times to define me. I don’t like to ask “Why me?” More often, you’ll hear me ask, “Why Not Me?” There are no guarantees in this world in regards to hardship and trouble. Life is not fair.

One benefit of looking for the light is that you find the good that comes from every situation.

Cancer is not good! My 13 year old daughter being diagnosed with Leukemia is not good. The 2.5 years of treatment is not good. The side effects of the chemo are not good. The long term physical, and emotional effects are not good.

But there is good! Having community surround you and carry you, is good. Realizing that you are stronger than you ever thought possible, mentally and emotionally, is good. Learning a deeper level of compassion and understanding for the suffering of others, is good.

I wish we never had cancer touch our family, but I WILL find the good things that came from that experience. I will hold onto those things, tightly. I will learn and grow from that experience.

I will stare at cancer, defiantly, and proclaim that it didn’t win. It didn’t destroy me. It didn’t crush me and if anything, I grew stronger.

I’ll be honest, it almost did destroy me. BUT…….it didn’t!

I choose to live a life filled with gratitude regardless of the circumstances that come along.

One thing that I am SO grateful for is life. Life is a gift. Knowing firsthand, the fragility of life and the reality of death puts perspective on EVERYTHING. My daughter could be dead, but she’s alive. That’s incredible. So what, that my car broke down or I’m having a bad hair day, or I’m late for an appointment or I’m 10 pounds heavier than I’d like to be……compared to life and death….it’s all frivolous. The reality of that perspective is a HUGE gift. Something I will forever be grateful for.

I’d love to hear what your grateful for.

ps. it doesn’t have to be as heavy as this post is. Gratitude is gratitude!

What if……

But what if I can’t do it everyday…….

So?

What does it matter? There is no right or wrong with gratitude. There is no failure. Imagine that, being a part of something where there is only success……

If you are thankful or grateful for one thing, you are winning!

If you are in a tough situation and you look for the light, you are winning!

If, even only once, you find the good within the bad, you are winning!

You can’t lose. I guarantee it

When you start to become aware that you are looking for the light, you can’t miss it. Picture a pitch black room, with no light. Now if someone, turns on a spotlight, will you see it. Yes! How about a flashlight? Yes! How about a match? Yes! If you are looking, you will see the light no matter how small!

Once you start to look, once you are aware that there is light, always…..you will find it and it transform your outlook on life. It’s crazy and awesome and mind blowing.

Imagine trudging through your day, at a job that’s difficult and thankless and just overall hard. If you focus on that, it all sucks. If you start to look for the light, it all changes. It’s not that it magically becomes easier but it changes. Your perspective changes. You see things that you may have missed or just might not have noticed and all of the sudden, it’s a little less horrid. The situation didn’t actually change. It’s still full of challenges, But your perspective changed and its amazing how much of a difference that makes.

June 27 2010

This is day that I left Jon and Geli at BC Children’s Hospital, and drove myself and my newborn home. I could not see any light, in this day. The next day I wrote this post, and while I was miserable and struggling, I was also so aware and thankful of the love and support we were receiving. Knowing that I had support of a community, helped to keep me going.

It wasn’t some “joy filled” thankfulness but it helped me to shift my focus from the immediacy and intensity of the moment and widen my gaze to include those who loved us. This brought an awareness of the love and kindness and encouragement that was available to us. That awareness helped to bolster my strength so I could keep putting one foot in front of the other. It helped our family to get through a very long 2.5 years of cancer treatment.

I’m excited to start this Gratitude Challenge on March 1st and just be more intentionally aware of the things that I have to be grateful for. Obviously, I’ve started already but I do hope you will join me in looking for the light and share how it impacts you.

My Journey with Food Addiction (part 1)

It’s said that knowledge is power and when it comes to food addiction and me, that saying is so true.

Here is a decent explanation of Food Addiction and how it relates to me…….(just click on the underlined words)

I’ve struggled with my weight for a really long time…..I’ve had issue with food for even longer. I remember sitting down as a child/preteen/teenager and pounding back cookies or chocolate bars or candy or to a lesser degree chips…..any kind of junk food specifically those with sugar and/or flour.

I’ve never really understood people who could take “just one”. As far back as I can remember, it was kind of an all or nothing deal. If I had a bag of M&M’s….I’d eat until they were gone…..and it was never the small bag – always the BIG ONES. I’d never just buy 1 chocolate bar…it was 3 or 4. I’d grab a handful of cookies and most likely head back for a second or third handful.

While I was a teenager, it never seemed that big of a deal because I was a tall, big framed person and weight wasn’t ever an issue for me.

I was 170lbs when I got married and definitely was not overweight by visual standards.

I still struggle because according to different standards like the BMI or other weight calculators, I was overweight based on my height vs weight ratio….but in no way was I overweight back then……I was thin, I modeled. I firmly believe those standards are flawed…

As far as my weight goes, I did ok until after I had my second child and then things started changing……I didn’t lose the weight as fast as I did after having Angelica. Literally, 10 days after having Geli, I was back in my pre-pregancy clothes and I could see my hip bones and everything. It was not the same after having Alexandra and from then on I began to actually “struggle” with my weight.

But this whole issue is about SO MUCH MORE than weight……and that’s where the “knowledge is power” aspect really comes into play for me.

I remember my sister telling me about a friend of hers who was eating a certain way and she briefly mentioned “food addiction” when she was telling me about this “way of eating”. I briefly looked into it but mostly because I was desperate to lose weight. I didn’t particularly “like” the food eating plan and so I dismissed it…..after all, I wasn’t an addict and I most certainly wasn’t addicted to food…I only had 10 pounds to lose and then I’d be happy……

I’ve spent a huge portion of the last 20 years dieting or eating according to a “food program”. I’ve eaten low carb, sugar free, fast metabolism, 3 day diet, and so many more gimmicky eating plans to try and lose weight. And while some of them worked for a bit, in the end……I’ve gained the weight back and felt more miserable and like a HUGE failure on top of it all.

I think that there have been 2 periods of time over the last almost 20 years where I’ve been close to a healthy weight. Neither lasted very long and between the different traumas and stresses in our lives, its been a brutal battle.

2014 has been an extremely difficult year for me and yet……..it’s been an amazing year.

We are exhausted.

And that’s putting it mildly.

Over the past 10 years, we’ve had numerous job changes and losses, a stillbirth, 2 second trimester losses, an early miscarriage, the long desired arrival of Josiah, a crazy long, difficult and exhausting journey to an Autism Diagnosis, children with special needs, cancer and the birth of our sweet Judah in the middle of it, serious Mental Health Issues, and 2 BIG house moves…..there is more that I’ve not accounted for, but that’s enough….it’s just too much. We are tapped out.

I feel like I’ve been fighting a battle for a long time. I have been…….. but what’s worse is that I really didn’t understand what or who I was fighting.

Earlier this year, I committed to 100 days of investing in myself. When I look back, I see that I was searching for answers and that I was close to finding them but just not quite there….

See, in the past, my focus has been for the quick fix….

– If I lose 10 pounds, I’ll be happier and then I can go back to doing whatever I want.

– Ok, realistically, I should lose 20 pounds, but that’s a lot and so difficult so if I eat no/low carb for a few weeks, I should loose a ton of weight, and then I’ll be happy and be able to do whatever I want.

– OK!!!! So I should probably be REALLY SERIOUS and just go for an entire month and hopefully lose more than 20 lbs and then I’ll be happy and can do whatever I want……….

It was all about losing the weight as fast as possible – which for me typically meant no sugar, no fruit, no carbs……just veggies and protein….and then something would happen and I’d “cheat”………. cause everyone deserves a cheat now and then, especially when you’re being SO GOOD. That cheat would typically turn into more than just a little treat and BAM…….soon I’d be stuffing my face with whatever I could find.

The “100 Days” challenge was difficult for me and yet amazing, when I look back on it. I’d decided that it needed to be more than a quick fix. I needed something longer term, because the quick fixes were not working. I needed a shift from “short term/quick fix” thinking to something that was more a “lifestyle/long term” plan.

So I started back in February….on Valentines Day to be exact…. my plan was no sugar, no gluten, low carb, only natural foods that I could eat in whole form or combine to make something. I’d started running in 2013 and planned on combining that exercise with my food eating plan to be able to lose weight and really get control of my life which felt so chaotic and out of control.

It started out pretty good. I started 2014 at 230 lbs…..

Towards the end of March, I was doing pretty good. I was down to 208 lbs. I’d run over 100 km in the month of March….and then I stalled.

March-April-May…nothing shifted and I was getting frustrated. I started eating things that were outside of my chosen allowable foods and my running slowed down and by the start of summer….I crashed. it probably didn’t help that I was anemic over the summer.

Summer of 2014 was an absolute out-of-control, gong show. I ate whatever I wanted, whenever I wanted. I didn’t exercise. I felt lousy. I was trying to just survive. It was so bad, that even walking upstairs to my bedroom was a colossal effort and so once I came down stairs, I avoided going back up until I had too. Lotta couch time over the summer and anything I did do, came at a huge price as I’d crash the next day.

Every time I walk upstairs now, I flash back to how bad it was over the summer and I’m amazed at the difference from then till now. It’s pretty drastic. I went up on my anxiety meds and even added another one into the mix. There were days that I contemplated hospitalizing myself because I could not get the anxious thought under control and I’d spend the entire day fighting thoughts….crying…..it was pretty bad.

September’s are always like a new year for me….a new start……so I kept looking forward to September and the kids going back to school and routine and…….when it came…..everything was still brutally difficult and nothing changed except that I didn’t have the kids home all day…..I didn’t do anything. I couldn’t. I was so exhausted. Just existing was difficult….it was bad!

I went to give blood in September. I’ve been donating blood since I was 18 and while it’s not been as regular as I’d like and been broken up by pregnancy, breastfeeding, and different meds that I’ve been on….I could finally give and so I did….only to be denied because my hemoglobin was too low. While at the time I felt pretty embarrassed to be denied, that was the start of something amazing…….like the catalyst that kick started this next phase in my life.

I went to my dr and asked for some blood work. I started taking iron…..went and saw my naturopath, got a few supplements…… Finally towards the end of October, I started to feel a bit better.

I honestly cant remember why or how the whole concept of food addiction came to me but right at that same time, I started doing some serious research and reading about food addiction.

It was like my whole world exploded into tiny shards of hope and shame, exhilaration and denial…….

What does THAT even mean?

I mentioned that I felt depressed about my life yesterday.

I thought I might take a moment to clarify what exactly that looks like, feels like and means to me.

I ran into someone yesterday who had read yesterday’s post and gently asked me how I was doing. I threw something back at them saying that I was ok and that I was just keeping on, keeping on.

Anxiety speaking here: I’m not sure if they were expecting me to be a huge mess of tears, or if they were thinking that I’d be fragile, or really off, or shaken, or…..maybe they were thinking none of the above and that’s just the anxiety saying that they were “thinking” or “expecting” something.

Regardless, it got me thinking….because I’ve written posts before and had people very cautiously approach me wanting to cancel a get-together that was planned because it might be too much for me, or talking to me as if I couldn’t handle things and they were not wanting to upset my delicate balance.

I’m not saying that I don’t appreciate people’s care and concern……NO! Actually, it’s exactly the opposite. I feel so cared for and supported and loved, when people care enough to step outside of the emotional distance that we, as humans, like to hold ourselves to and try to bridge over into my problems and stresses. It’s HUGE and I’m so grateful.

On one hand, I don’t like to appear weak, on the other hand, I don’t like to be needy, but so often I am both weak and needy……..and I’m recognizing that having a “community” or a “family” that can help to lift you up and carry you when you feel exhausted or worn down, is an incredible, INCREDIBLE thing.

When I share about feeling depressed about my life…….I think what I’m trying to say is that I’m in a tough place and I don’t have a clear vision as to how to move from this difficult place into a better place. I don’t like NOT KNOWING……..I like to have a plan, to be in control, to be working towards a goal, to be able to make things better……

There are somethings in my life that I cannot change. I cannot remove the emotional or physical marks that cancer has left on every person in my family. I cannot remove the anxiety that all 5 of my children seem to deal with in varying degrees, from severe and debilitating to mild. I cannot change the fact that autism is a very real, exhausting and difficult neurological disorder that we deal with, as an entire family, EVERY. SINGLE. DAY. I cannot change the fact that ADHD has impacted 4 of my family members intimately and the trickle down effect of that disorder effects the rest of us.

I can’t “just fix” those things. They are here. They are real. They require HUGE amounts of effort mentally, emotionally, physically, and spiritually. They affect each interpersonal relationship within my immediate family and many outside of my family.

There are moments when “the reality” of my life seems WAY. TOO. REAL…….and my options are to keep on keeping on….or give up.

I cannot give up.

I mean, I could. That was something that my counselor said to me at one point. I could give up. I could check out. I could run away or end up in a hospital somewhere…..unable to “handle” things and that it was my choice to carry on.

I think she was trying to tell me that I “held power” in my situation and that many people did/do check out and that I was doing well, in the fact that I still had the ability to CHOOSE to carry on.

I think I get what she was saying and yet……oh there is always a yet or a but, isn’t there……..I don’t feel that giving up is an option. Yes, somedays, it’s all I can do to just get up and get dressed and put my make up on……

That’s my thing…..my gimmick…..the one thing that signals to me that the show must go on….if I get up and get dressed in real clothes (not pyjama wanna-be’s) and do my hair and make up……..then I accomplish so much more. Very rarely, do I ever, stay in pyjamas and not do my hair and make up. I get “ZILCH” done on those days and I simply cannot afford to not accomplish things……

The 2.5 years of cancer treatment was brutal. It taxed me to my extreme limits as a person, and definitely as a parent. I am still not recovered from the toll that it took on me.

I find that I feel a bit like I am a hollow egg (Humpty Dumpty, if you will). I have a very thin and fragile shell and as long as things don’t shake me or bump me, I exert every bit of energy that I have to hold my broken and cracked self together. One little bump and the precariously balanced pieces start to fall. I fall apart……

Jeremy has a bad Autistic day……….BUMP!
Geli has an emotional day relating back to cancer crap………BUMP!
Josiah has an ADHD frustration flip out…….BUMP!
Judah is 3 (enough said)………BUMP!
Xani experiences extreme anxiety for unexplained reasons…….BUMP!

So many bumps……so much energy expended trying to keep all the pieces in place…..so many pieces falling…..so little left at the end of the day.

I can’t make these things go away, and so I must learn how to live and carry on and continue with pieces of myself broken and fallen apart.

Some of it will get better….or at the very least different, with time. Some of it will never go away, but the kids will grow up and learn coping skills. And my hope, my prayer, is that I do a good enough job of training these amazing blessings of mine how to deal with life’s challenges with grace and dignity; and how to keep on keeping on even when you are unsure of how to proceed and what the best course of action is…..

But………

………sometimes, the enormity of my job weighs heavy on me. Sometimes, I’m unsure how to best help these ones I love so dearly. Sometimes, I feel like I don’t have the emotional or physical strength to deal with “even one more issue”(…and there is always “one more issue”). And then I feel discouraged…….

We have had a few BIG BUMPS recently. Ones that I’d love to share, but it’s just not the right time…….and the added pressure and stress weighs very heavy and makes “coping” that much more difficult. And so here is where I am at today……..

I’m dressed. I have my make-up on and my hair done(sorts of, if a messy pony tail counts…). The kids are off to school, except for Geli – who is still feeling sick (Thanks to Xani for bringing home a stinking bug from New York) and Judah. I’m needing to make a list and see what I can actually get done today. I know I have a mountain (probably 8 large loads) of laundry to fold, sort and put away. I know the main floor is a disaster and the kitchen needs to get put right. If I can accomplish any (not all, but ANY……) of that before the kids come home; as well as planning dinner for Angelica’s 17th Birthday (which is today) I will consider today a success. I have LOW standards…..

So, my “feelings of depression” are an exhaustion, a feeling of uncertainty and brief moments of hopelessness, a sense of constant pressure and chaos, an insecurity of my abilities to adequately parent these amazing children who have been presented with striking challenges to overcome……it’s a little bit of acknowledging a desire for some easy days, yet not wanting to stay in a place of discontent with my life, because that helps no one. It’s a tough place. At times it’s a wonderful place…..but right now, it’s mostly a tough place.

It won’t stay that way forever. I know that I’ll feel stronger and stronger again….I always do, but it is tough.

I would encourage you to look around you and encourage each other…..it doesn’t matter whether you are a single parent by choice or by circumstance, or whether you have special needs children or a child with a long term or chronic illness, whether you have a difficult or challenging child(ren) or need to work multiple jobs to make ends meet, whether you or your loved ones struggle with any kind of mental illness or disability, or whether you seem to have a fairly smooth go of things at the moment……

Be Kind.
Be Compassionate.
Be Loving.
Be Encouraging.
Be Understanding.
Be Gracious.
Be Merciful.
Be Caring.

Understand that everyone is doing their best, and while “our bests” may differ depending on our circumstances and experiences and abilities……..be gentle with each other. Your care and support may make the difference in someones life today.

Moving Forward The Morning After

So I posted last night…..

I was tired and emotional and probably if those two factors had not ganged up on me….I may have filtered myself a bit more or even just made less typos…..maybe….maybe not?!?

I don’t know that this morning brought any new clarity with it.

I woke up with a killer headache……….at 5:30am.

Yah, it’s been a long day already and it’s only noon-ish. Did not get back to sleep after that. BLERGH!!!!

On a side note….It’s gorgeous outside.

That is the view to my right….

and this is my view straight ahead…..

She’s not supposed to be on the couch….but I haven’t exactly kicked her off.

It’s the last day of school before the Christmas Break….and probably my last quiet (ish) day for the next two weeks.

So, I’m taking advantage of it. I’m sitting. The house is a mess, and I made Judah pancakes for lunch. He is currently trolling Netflix….I believe Ninjago is the show of choice at this exact moment.

I’m currently staring at my Christmas Tree trying to figure out what I’m thinking, but again with the 50 million thoughts going in 50 million directions.

I had a few people send me private messages of encouragement and those were so nice to hear.

I wonder if it’s about perspective.

I’m in the middle of it all. From my position, I look around me and I see children who are unique and amazing and challenging in their own fantastic ways. I see the screaming and the bickering and the squabbling and the challenges to get them to do their chores and take care of their responsibilities. I see their shortcomings and I want to work with them to strengthen those areas while at the same time encouraging them in their strengths. I see these amazing individuals with really great hearts even in spite of all the challenges that we’ve faced individually and as a family……. But it’s a constant effort to keep these 5 bodies moving in a forward direction.

We were so isolated over the “cancer years” and before then….doing almost anything with Jeremy required HERCULEAN effort and sometimes it was easier to just not do anything. Again…..very isolating.

It is hard when you’ve had it said to your face that people can’t be friends with you because your child is too difficult. Or to hear from others that you shouldn’t subject your children to people because they are too much effort to have around and be around.

Just typing both of those down….I realize how brutal those two comments are. I mean, I know how brutal they are….I’ve lived though both of those said directly to my face and more. But I can’t imagine saying those things to someone…..EVER!!! I love children. I especially love the challenging kids. The ones that make you think and keep you on your toes. The extremely smart kids that say the most incredible things but require a little more attention and focus……I love the regular kind of kids too, but somehow, the ones that people seem annoyed with or bothered by….the ones that talk and talk and talk and talk and never shut up……I LOVE those kids. I want to go out of my way to make sure that they feel special and included and NEVER EVER a bother or an inconvenience….

I get it. I know how much effort it is. I live it…..EVERY. SINGLE. DAY! Jeremy has not been the easiest child. He requires some effort. Well, he requires a lot amount of effort. So does Josiah in a different way and Judah….well, he’s a 3 year old. What 3 year old doesn’t require some attention and effort. My boys require effort……I know this. I guess, it would just feel really good to feel like others “want” to be with my kids. Do you know what I mean? I think that in spite of their particular challenges or maybe even as a result of them….that my kids……all 5 of them are pretty amazing. I’d love to feel like others felt that too and wanted to spend time with them….not cause they HAD to, but because they WANTED to.

So, to those who have said something…..THANK YOU. Really! I appreciate it more than you may ever know.

I’m not sharing this in the hopes that people will “do” something. I am just trying to unravel some of this mess inside myself. Part of that is dealing with the hurts and wounds that I have or have gotten.

I realize that I’ve been hurt and I definitely have some sore, open wounds when it comes to my kids and how they are perceived and received.

And this OBVIOUSLY colors how I hear people comment on my kids.

So the school wanting to help Siah….turns into….HE’S A PROBLEM…..which I can’t even fathom….cause he’s freaking sweet kid who can read and write and wants to please…….and then I go…WHAT….WHAT do I even do with that….

How could be he a problem…..which, when it comes down to it….that is not even the issue at all.

He is a great kid….who has some quirks and may require “some individualized strategies” to help him succeed and how do we (parents & school) as a collective team help him to achieve success?

So we met, and talked through some things and I think I have a better perspective. I think we are more on the same page than I “felt”.

Which is great.

Not that the whole things doesn’t still stress me out….but the Principal….she’s an amazing lady, encouraged me to trust them and to just “plug my nose and JUMP!”

I believe this school and these people are amazing people…..I believe they truly care about Josiah. I really do believe that they want the best for him. That they want him to succeed. And so…..I jump.

I’m scared.
I’m nervous.
I’m sure I’ll need reassurance again.

But…..

I want to trust.
I want to believe.
I want to be in “community.”

and so….

I carry on…

one step after the other…..hopefully in a forward direction. 🙂

Let’s Talk About Mental Health Issues……

I’m frustrated with the whole concept of guilt and Mental Health.

I, in no way, have all the answers; and on most days I question whether I have any answers. What I do know is that I deal with anxiety and have for as long as I can remember. My mom says that I was fearless as a child and so, I’m not exactly sure what happened, because I don’t really have any concrete memories where I wasn’t dealing with anxiety.

At least 3 of my kids deal with some level of anxiety and Jeremy is also dealing with ADHD, Executive Function Disorder, Learning Disability and Autism. All of those fall under the “Mental Health” umbrella. They all have areas of “Brain Disfunction.” In my mind, that means there are areas where the brain is not functioning in a Neuro-typical way. I do understand that there are many who don’t want autism classified as a mental health disorder because it is usually thought of as being a genetically predetermined disorder, and there is a certain amount of “shame” associated with mental illness or mental disorders.

I choose to think differently about the whole concept of Mental Health.

I deal with any physical health issues for myself or my children in a completely non-guilty manner. If myself or one of the kids has a cold, or a broken bone or some other physical ailment, I don’t feel guilty taking them in to see our Family Dr or a specialist, if needed. Why then, if myself or one of the kids are dealing with Mental Health Issues, should it be any different?

In my mind, it shouldn’t be any different at all.

If my car needs a tune up. I get it done. If my house needs a hose for the water tank, we get it done. If our clothes are in need of repair or replacement, then I take care of it. Why do we take care of our physical bodies and our belongings, but hesitate when it comes to mental and emotional issues.

We, often, hesitate to talk about it openly and freely. Sometimes we hesitate to even admit it to ourselves. It’s a tricky subject and not one that everyone understands or even cares to try to understand, but Mental Health and Mental Illness are not going anywhere.

I’m trying to raise my kids to understand that Mental Health is as important as Physical Health. It’s important to take care of your mental/emotional state; and it’s important to take care of your physical state.

If I needed insulin because my body never produced it, or it produced a very small amount……would that make me “less” in some way. Would it mean that I was broken and not as valuable or worthy as someone else who didn’t need insulin shots? So what if I need extra seratonin in my brain, for either a while or even forever……I don’t see how the two are different. What if genetically, I don’t produce as much as you do? Or what if I experienced some traumatic event in my life and the stress has negatively affected my body in such a way that I needed some help, in the form of seratonin or any other mental health drug…….why is that any different than needing insulin or any other drug.

I don’t see that it is.

In my family, there seems to be a huge history of anxiety and depression. I have also experienced a stillbirth, 4 pregnancy losses and cancer, as well as dealing with a child/children with special needs. So whether it’s genetically predispositioned or because of some life trauma…..I don’t know.

What I do know, is that being on medicine has helped “ME.” I’m not advocating that everyone needs to be on meds. Because if you can deal with your mental health issues through counselling and Cognitive Behaviour Therapy….then awesome….but by doing that, you are still “taking care of” your mental health.

For the first time in my life, that I can remember, I feel like the inside of me matches the outside of me. It’s crazy hard to explain, but I will try. I’ve had many people not believe or understand that I was anxious (as a teen or young adult) because I seemed so confident and in control. I think that must be where my kids get it from. They seem to hold themselves (mostly) together when they are at school or church or “out” and then when they get home, they feel comfortable enough to “fall apart”.

I don’t know that I did a lot of “falling apart” but I did use “control” as a method of dealing with how “out of control” I felt. I felt that I needed to control my situations, the people around me and myself in order to feel safe. It got to the point where my “control issues” were hurting my relationships. And yet, I didn’t understand “why” I felt the need to “control” everything. I just knew that I felt safer when I knew exactly what to expect.

I did believe that I was a good person and yet a part of me didn’t believe that. I believed I was a good friend and yet the insecurity and anxieties held me back from actually “being a good friend.” I thought I could do things like “sing” and yet I could never put myself fully “out there” because I couldn’t possibly be good enough and what if I made a mistake…..what would people think of me. I know that lots of people deal with a certain amount of insecurity and I don’t know that I can fully explain just how it felt inside of me. But imagine if you thought you were good enough but then you weren’t really sure if you could believe yourself…..and if you were so unsure then maybe you really weren’t good enough. Throw in some perfection issues which meant that you couldn’t or wouldn’t do ANYTHING you weren’t absolutely certain that you could do with 100% accuracy and confidence………and that pretty much left you not doing much at all. You wanted to do “stuff” but unless you could control the situation and knew exactly what to to expect and exactly what people’s reactions would be and exactly what the outcome would be……….which having all of that fall into place for any specific event, was pretty much an impossibility and if it did…..you came across so confident that no one would ever guess that you were dealing with insecurity and anxiety……and throw on top of that whole mess, that you never wanted to come across as anything less than confident and so you were exhausted all the time just trying to hold yourself together so that you could come across “PERFECTLY” because anything less than perfection was failure and “FAILURE” was never acceptable and basically you have a perfect recipe for disaster.

Knowing what I went through as a teenager/adult, and then when I finally figured out that I was dealing with “anxiety”, feeling so relieved and yet angry and grieved over all the lost time………I am strongly advocating for my children’s Mental Health when necessary.

I look back at my teenage years when I didn’t feel strong enough or worthy enough or acceptable enough to do things like, go to college or university. I figured that I was good at looking after kids and so rather than do things I was interested in, like music or teaching or even in the medical field….I took whatever jobs fell into my lap, got married and had kids. I was too scared to do anything else.

I love my husband. I love my kids. I’m not unhappy with my life, and yet…..I could have done things differently. I’ve shared this with people before and I usually hear something like, “We all feel insecure and regretful of the things we wish we had done but didn’t do.” This is different. I’m talking about life crippling anxiety. Like there where things I wanted to do and yet was SO scared to do them that even the thought of doing it stressed me out, and so I did what felt safe.

I’ve lived my entire life, up until now…..only doing things that felt safe……and that doesn’t seem like a huge list of things, especially compared to things that I have dreamed about doing over the years.

I’ve accomplished a fair amount in my 38 years but I’ve dreamed of accomplishing so much more. I’ve just discarded those dreams because I wasn’t good enough, or people would think I was stupid for wanting to do those things. I believed the lie that others could do it better than me and I shouldn’t even try in case I failed. Because failing is one of the worst things ever. I believed that. I’ve believed that for so many years and I hate it.

This is why I’m a HUGE advocate for my kids and their mental health. I’ve pushed my kids beyond every “limitation” that I’ve had that has held me back. I’ve explained why I’m pushing them into uncomfortable situations. I’ve had them ask for things from adults/teachers/doctors/etc. when they felt uncomfortable doing so. Discomfort isn’t a bad thing. Failing isn’t a bad thing. It just means that you tried and for whatever reason it didn’t work out, this time……..and that’s ok.

Never try, never win
never get a break
You miss a hundred percent of the
shots you never take

Hedley came out with this song and it’s been HUGE for me……

I’m a lot more open now. I say “yes”, when everything in me wants to say “no”, because “NO” is safe. I don’t mean that I say yes to everything. I’m still in recovery mode from the 2.5 years of cancer treatment and the havoc that wreaked on me. But, I will honestly assess my stress level, versus just saying “NO” because I’m scared. I ask myself if I’m allowing anxiety to hold me back from saying yes to something that I might actually want to do and even be good at. I try to be honest with myself about what I can do and what I can’t do, and to not view everything through the lenses of anxiety. I will even tell others that any hesitation they might sense from me is anxiety and I’m not willing to allow it to control or rule my life any longer.

Does this mean that all my days are good, confident days…..NOPE! Not at all. And when I’m having a particularly bad day – as far as anxiety goes – I am gentle with myself and honest with both myself and others as to how I am doing. Because I know that tomorrow is a new day and most likely I won’t feel the same. I have stronger days and weaker days, but now I know that I am “fighting” anxiety and that it’s not me……I’m not bad.

I am enough. I am good enough. I am strong enough. I am confident enough. I am enough.

I want my kids to believe that they are good enough and can do whatever they want. I want them to “go for” the things they want and so I advocate for them and I encourage them to advocate on their own behalf. We talk about strategies for dealing with “issues” and “insecurities” and “anxieties”. We use medication as an aid, if necessary, and we do it all without guilt. There is no guilt or shame in needing help…….whether its physical, mental, emotional or spiritual.

I am enough!
They are enough!
You are enough!

Letting Go

Sitting at the kitchen table, plopped down in the middle of a mess.

Staring at a blank screen…..

Smelling the herbs just picked from the garden and hung to dry……..

This has been a very different summer. Different than any we’ve ever had before. I’ve not written a lot. I gave myself the summer off. Well, if I’m honest, it’s been a long time since I’ve posted regularly. Stress is a funny thing, and by funny……. I guess I mean horrific.

Stress is a killer…..a killer of energy, a killer of focus, a killer of creativity…..

Even now, I have so many words floating through my brain and I’m not sure which ones to grab onto and which ones to banish and which ones to allow to continue to float around in there.

I’m doing a lot better than I was…….at least I think so. And yet, I’m not sure where I’m going.

Angelica came back from Camp Goodtimes (The camp put on by the Canadian Cancer Society) and was quite emotional as she shared with me how she was realizing that she could never “go back” to normal. There is no “going back”. There is no “picking up where we left off” or “getting back to where we were or the people we used to be”.

This is such a tough concept to grasp. There is so much grieving and letting go to do and it just keeps going on and on and on……so much so that this feels like the new normal and yet……I don’t like this. I don’t like this new me. I don’t like the me who is exhausted all the time. I don’t like the me who can’t organize and plan and arrange things instantly. I don’t like the me who forgets things and lets balls drop. I don’t like the me who can’t accomplish very much in a day.

I feel like I used to be SO. MUCH. BETTER. at everything. And recognizing that I’m no longer that person is a tough thing. I want to be that person. I want to be able to do more and organize more and think more and handle more and yet what I’m stuck with is SO. MUCH. LESS!!!!!

Less organizing, less tidy, less capable, less focused, less disciplined, less stable, less energy, less…….just SO. MUCH. LESS!

And I hate it!

And yet, what I feel that I need to do, is to recognize that the “Old Me” is “no longer……she was buried under a mountain of stress and cancer and grief and loneliness and exhaustion and……

mess

This…..the me sitting here right now with her scattered thoughts and messy table and even messier kitchen, with no clear schedule or plans or meal plan (that one really gets me – and yet everytime I sit down with my paper and pen….the blank sheet mocks me with my inability to “make it happen” and I put it all away and allow myself to get distracted by something else that doesn’t require so much thought or energy)…..the woman who prided herself on the healthy foods she fed her kids has been replaced by one who allows her kids to forage for cookies and tortilla chips or dry sugar cereal and calls that breakfast. This person is who I am now….this is what I have to work with…..and I find that so difficult.

I’m trying to accept her. To love her for all her faults. To recognize that for all the things she can no longer do or be…….that there are still things that make her incredible. I’m trying to love the fact that she is more compassionate than she has ever been, that she is more understanding and accepting of people, that she is less judgmental, less controlling. I’m trying to believe that there is good that has come from all of the bad and that even though there has been so much loss…..that there is still “gain” and yet its hard…..

When I see all I could do and to try to stack it up against what I can do now…….I fall so short.

It’s a tough concept….to let go of who you were and to accept who you are…..much more difficult than you’d think.

I’d like to think I’m getting there, but I’m still not sure I like this new me…..and yet, I can’t go back. I’m not even sure I’d want to.

Changes can be Good

So many new changes…

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We moved into our new home just over a week ago. The home itself is lovely and bright but the actual move just about did us in.

We have moved so many times over the past 18 years but this move was by far the absolute hardest…..even taking our move from Abbotsford to Langley after 10 years of living there.

I’m not exactly sure what made this move so horrific, but I’m almost positive that our “reserves” to be able to handle stress were non-existent and that made things so SO tough.

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We have things settled down to where we can sort of function but we are not actually “settled”. My room is a disaster with unopened boxes still stacked about and we are still trying to figure out how to place our furniture. It’s tough when everything had a place and now the layout has changed and you are not sure how to “Tetris” everything in. There is quite a bit of puzzling and re-arranging to try to fit 7 people and all of their stuff into a new space.

Jeremy is finally starting back into his regular homeschool routine after 2 weeks of chaos. We started a little bit at the end of last week just to ease him into it and then we hit the ground running this morning. Our “office/homeschool” room is still a bit chaotic but it’s coming along slowly.

One of the bigger changes around here, as if moving wasn’t enough, is that Siah is going to the local Elementary School. He started the first Monday that we moved. He’s been so excited. We had a big meeting with the school before we moved and then another “intake meeting”. That one was kind of rough because you are talking about all the ways your child struggles and will need help. Having a child with learning differences is not easy but having already gone through the Infant mental Health Clinic at BC Children’s has totally given us a leg up to be able to get him the help he needs.

It’s exciting to see him SO excited to go to school and meet new friends. Today he is going to attend until noon. They’ve started him attending slowly and are working up. We’ve gone from 1 hour last Monday to half a day today.

I’m shocked at how much it feels like I have “all this free time”. It’s quite a lot of work teaching two kiddos while supervising a third and trying to care for the home too.

So not only are we adjusting to a new home but also a new schooling balance. I’m excited and exhausted. Looking forward to spending the summer out on my deck and in the backyard.

Just trying to get through today…….that’s how my world feels right now. Just focused on today…….sometimes that’s all I can handle.

But I feel like this is a new beginning and I’m pretty excited. I have no idea what the future holds but for the first time in a long time……I’m feeling that we are headed in an upward direction. I feel like I can breathe. I don’t feel like I’m drowning. I’m tired but feel like we’ve crossed over from barely treading water to being able to rest and rejuvenate. It’s such a welcome feeling after the past 3 years.