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These Are A Few Of My Favourite Things

This week I am participating in the WEGO Health “Advocating for Another” carnival. Over the next few days, I will be answering blog prompts to talk about our life as an autism family. All of the posts on my blog this week are dedicated to my son James, in recognition for what an amazing brother he is.

Today’s prompt: A few of my favourite things – Write 5-10 of your favourite things about your loved one. Celebrate their uniqueness and be sure to tell us why those are your favourite things.

I make a big deal of the fact that my boys are great brothers to one another, and that is something that means a lot to me. I try to encourage a positive relationship between them in whatever ways I can. Today, though, I want to celebrate them as individuals.

 

A few of my favourite things about James

1. He is snuggly. When he is sleepy, or simply wants a cuddle, he climbs into my lap and his body relaxes completely against mine. At those moments, he is like my very own teddy bear, all softness and warmth. No matter how bad I might be feeling on any particular day, those snuggles bring a smile to my face. Because how could that not make me feel better?

2. He has a natural sense of empathy that goes beyond his own family. He truly cares about what is going on with other people, and he has an uncanny ability to walk a mile in someone else’s shoes. This is one of the things that makes being around him such a magical experience.

3. He has a great imagination. His mind travels to places that would be beyond my wildest dreams. He creates stories about dragons and princesses, about magic toucans on faraway worlds, about unicorns that glitter and shimmer in the dark and fly to the tops of mountains. If you ever want to escape for a while, all you have to do is ask James to tell you a story.

4. He likes running. This interest may or may not stay with him, but for now, I am really enjoying the fact that he likes to go out for little jogs with me. Running was an interest that I shared with my dad, and to be able to share it with my son as well is tremendously special. It is a lot of fun, and it gives us a bit of time together, just the two of us.

5. He is passionate about what he believes in. OK, sometimes the passion comes across as a drama queen kind of attitude that drives me insane, but I love that James speaks his mind. I love the fact that he has strong opinions and a willingness to express them.

A few of my favourite things about George

1. Many people think that children with autism are not capable of affection, but George definitely is. He has a heart full of love and an endless supply of hugs for those dear to his heart. He is tall and gangly, but he is still just about able to clamber onto my lap for a hug. When he outgrows that ability, I will be truly sad.

2. He is a very funny kid. He finds humour in the oddest places and is so enthusiastic about it that we cannot help finding it absolutely hilarious. The humour is handily packaged with the most infectious laugh you ever heard. Once George gets going with his laughter, that’s it. You may as well cancel whatever plans you had because you’ll be too busy rolling around on the floor.

3. He’s a technogeek. Some people just have a knack for figuring out how things work, and George is one of them. When he was about five, I was trying to get the DVD player to work. George watched me wrestle with the thing for a while, and then he clicked his tongue impatiently, elbowed me out of the way, and pressed one button to get the movie going. It is useful to have a built-in tech support person.

4. He is determined. George has definitely inherited a stubborn streak that is in both me and in his dad. If he wants something, he will find a way to get it. There is no problem that he gives up on, and he can be very resourceful in how he goes about finding a solution. Sometimes this is not great from a parent’s point of view, but I love the fact that George just does not give up. On anything.

5. He has a fantastic memory. He only has to go somewhere once in order to know its location, what there is en route, and how long it should take to get there. It can be a little awkward when we’re trying to get from Point A to Point B and George knows where every single donut shop in between is, but if we’re ever in doubt we can just ask him for directions. Who needs a GPS when you have a child with autism in the car?

(Photo credit: Kirsten Doyle)

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GUEST POST: Talking About Bulbs

Today we wrap up what’s been a great week of guest posts. So far we have heard from an autism parent, a woman embarking on a weight-loss journey, a mom who suffers from mental illness, and  an Asperger mom who runs. Today’s post comes to us all the way from Spain. Gati Presumida, like my guest writer yesterday, participated in the Health Activist Writers Month challenge. She has Lupus – a condition I knew nothing about until I started reading her blog. She’s not talking about her Lupus today, though. She is talking about her father’s battle with dementia.

Yes, bulbs.

Light bulbs.

You are not crazy. You read that.

I am not crazy. I wrote that.

And, as per mental health, no one is ever crazy.

Because, as crazy as it may sound, talking about bulbs for an hour was the thing that made my yesterday complete.

By the time you finish reading these lines I only hope you can agree with me on this: talking about bulbs can be the greatest thing ever.

My dad suffers a condition called Frontotemporal Dementia. Although God only knows when it started, he was diagnosed 4 years ago, when it was too late for many things.

Dementia has altered our life in such ways that you cannot imagine. However I am not going to tell you another of my “soap operas” today.

I would like you to see what I see. I would love to give you the key of perspective so that you can see how talking about bulbs can make your day.

My dad’s dementia has forced him retire 10 years earlier than what he planned. He is not allowed to have any money nor credit cards or bank accounts and whenever he goes out he gets 1000 questions afterwards so that my mum can be sure he hasn’t done any “crazy” thing like buying a new car or getting a loan on my behalf.

Although my dad can walk he feels under so much  control that he feels house bound.

He gets told off whenever he tries to help and does something. He feels useless and that’s unfair because he may have dementia, but dementia does not have him… yet.

Maybe next year things are different. But nowadays he can do so many good things! And he, nor anyone, should never feel useless.

You see my dad and see a “crazy” person you should not trust. But I see a person that is trying to fight. He knows dementia is meant to have him, but he knows it is up to him to slow the process down.

I know he can do it. That is why I bought him a e-book so that he can train his mind by reading. I ask him for help whenever I need. Not because I pity him, but because I really think he can help me. He is so wise and so capable of doing things and everything. He is worth more than anything to me.

Yesterday I sent him an e-mail asking for help. Do you want to know what he replied? “It comforts me that you think I am capable of doing anything”. It breaks my heart.

He would tell me things like “I am glad you don’t think I am crazy” every time we have a chat.

If I had an idol that would be my dad. Only because I know I would not be able to cope with dementia in the way he does.

Although he sometimes has moments in which he forget things or he does things he should not do without realizing (like buying a car), most of the time he is fully aware of his situation. He knows he is doomed to be defeated by dementia and yet he is fighting. To be honest, had I been in that situation, I would have never tried to fight. And he does. Every single day.

He fights dementia. He fights to show people he can do so many things, and that he can do them right. He really fights to show the world he is still capable of doing things.

People say my dad is crazy. That Dementia is getting worse… Just because somehow he bought a new car. While others see this as an act of dementia I see a gesture of guilt and gratitude. Because he buys that car for my brother as a way to say “thank you for giving up your life, your family, your job and everything to help me out”. I now guilt can be stronger than anything.

I constantly hear “your dad has one of those bad days” just because he forget things. I forget things all the time! Oh, so he is worse today because he doesn’t know which day it is? I rarely know what day is today! What for? My everyday is the same, so why should I bother about what day it is? I am happy being clueless about if it is Monday or Friday because whenever I got something important coming up I set an alarm to not forget. My dad does the same.

My dad’s dementia has got worse because he rumbled about bulbs for like an hour yesterday.

Really? Have you thought about his life?

He has no job, he is not allowed to do anything on his own… He feels house bound like I am.

To tell you the truth, I have one million Ph.D on stupid things. It is what you do when you have nothing to do and the internet is your only window to freedom. So, yes, if that day you need to look for an energy equivalence table in order to get a new bulb, you may take the chance and “surf” a bit deeper into the matter. Well, do you have anything better to do that day?

Oh, so you think you do? Maybe, if it is only one house bound day. But when you are in that cage for 4 years… What now?

Well, there you have it. Bulbs are great thing to get a Ph.D on. It is just a matter of perspective.

Dementia has given my family many reasons to be sad and worried about, but every time we have a family get together you only hear laughter, jokes and that funny teasing that my family knows to do so well. I love that. I treasure each one of those moments.

Maybe during those family get together you see my dad’s upset face at some point. You would probably think it is one of his dementia black-out moments.

I don’t see that. I see guilt and sorrow for having destroyed so many things, for having taken his kid’s lifes away without realizing. I know he wonders how he could not see all that coming…

My dad gets to my mums nerves if he talks about bulbs for an hour. Don’t judge her because we may not know what it is like to be 24/7 with a person like my dad. Like many parents that lose their nerve and smack their kids with apparently no reason, my mum probable loses her nerve. Dementia has altered her whole life, so I guess she deserves the right to lose her patience from time to time.

Light bulbs are not a crazy thing to talk about. I love, I treasure, each one of those “crazy” conversations. Firstly, because I don’t think it’s crazy. I understand my dad and each one of his sudden interests.

I love talking bout bulbs because it is my dad I am having that conversation with.

I will always be up for another bulb chat because I don’t know when that will finish and when dementia will have my dad. Because today he knows who I am, but I don’t know when that will come to an end. So, yes, I am number 1 fan of bulb chats.

You may think that my dad is crazy. I don’t. I see it from another point of view. I only wish people did the same. Not only for my dad, but with many other people that, alike him, have a mental issue.

As you see, Mental Health, from my point of view, is a matter of perspective. So why don’t you give it a go? I am sure you will get surprised by how things can change just with a tiny bit of perspective.

Don’t let yourself get carried away by words like dementia, bipolar or depression. Don’t focus on the wording but on the person you are talking to.

From a different perspective I am sure you will see so many things that were hidden behind those names.

Take this key of perspective I am handling to you today and I am sure you will also tell others how an hour bulb chat made your day.

To learn more about Gati Presumida, check out her website!

(Photo credit: http://www.flickr.com/photos/born2bmild/5158015580/. This picture has a creative commons attribution license.)

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Lessons Learned: Getting The Cup To Be Half Full: Guest Post by Phaedra Kennedy

Almost 12 years ago, I packed my life into checked baggage and moved, by myself, halfway across the world. When I landed in Canada, a country that I had never set foot in, I did not know a single soul. My friend Kane (a truly amazing human being who really deserves a blog post all of his own) put me in touch with his friend Phaedra Kennedy, who happens to live in Toronto. When Phaedra and I met, we discovered to our mutual delight that we shared an interest in running.

Since we met, a lot has happened. We met our life partners several months apart and we are both now married. We’ve moved around, stuff has happened in our careers, and for both of us, running took a back seat to other events that were going on in our lives. Now, we are back in the running scene, and Phaedra is coaching me for the 2012 season. This is truly an honour: Phaedra is the kind of runner other runners look at in envy and admiration.

Today, Phaedra tells us about how she rose above personal tragedy and sadness to have a phenomenal season of running. This is a tale of strength and determination that I for one will take with me as I strive to achieve great things in 2012.

When Kirsten asked me to write a guest blog post for her, I was incredibly flattered.  I was also a little befuddled.  Her goal was to start off the year on a positive note so she approached 5 women she considered to be inspirational.  To be included in that group was high praise.  Me, inspirational?  I don’t know about that.  I thought long and hard about what I should write about.  She gave me no guidelines only that it had to be positive.  Which was challenging for me given that I had been in a bit of a funk as of late.   To top it off, I don’t normally think of myself as a positive person.  That had been cemented by the fact that I took one of those online tests a while ago to determine if I was a pessimist or an optimist.  Surprise, surprise, I was a glass half empty kinda gal.   But, somewhere along the way this year, my mindset MUST have changed a bit because this year has been one of the best years of my life and I chalk that up to me WANTING it to be that way.   Positive thought and determination made it so.

It all started in November of 2010.    I had just run a dismal race at the Scotiabank Waterfront Marathon.  I had decided to do the marathon after spending 1.5 years going through 3 failed IVF cycles.  It was a half-hearted attempt to get my athletic mojo back.  Over the course of the year and a half, my body had become a science experiment.  I had given up control over it in the hopes of starting a family.  I had been poked and prodded, injected with drugs, monitored on an almost daily basis.  My normal exercise routine went out the window.  I became a slave to my cycle.    Instead of early morning swim sessions, early morning clinic visits became the norm.  It took a toll on my body and my emotional state.  We had one last kick at the can in November of 2010.  When that failed, we were devastated.   When you’re used to being able to train your body to do what you want it to do, to have our 3rd IVF attempt fail was frustrating.  Especially when your doctor kept telling you everything looked great.  For whatever reason, my body was not meant to bear life.   It was a tough pill to swallow.  I went back to running to help soothe the pain.  There were some tears shed on those runs.  But there was also a realization that perhaps I had been given a different kind of gift.  The gift of being able to really follow my passion, to really delve into running like I never had before.  I was coming up on 40 and I thought You know what, I’m going to make 40 the best year of my life (to date).  With that simple vow, a world of possibility opened.   I rose to the challenge of taking the knowledge I had and crafting a plan that would get me to my goal.  I set what I thought was a lofty goal:  I was going to run 3 half marathons in 2011, with my last one being run in 1h 40 min or faster.  And I was going to blog about it.  Blogging would keep me accountable and if I managed to reach out and inspire a few folks along the way, then that was a bonus.

My plan was a departure from most traditional distance running plans.  Too much mileage and I will get injured.  This time around I focused on quality vs. quantity (no junk miles!!) And I added more strength training to my routine.  My diet also changed thanks to an amazing program called Precision Nutrition.  Gone were the processed foods and larger than necessary portion sizes.  I did a complete overhaul. I was quite proud of my little plan and my body responded to it well.

My first half marathon was the Chilly Half in March 2011.  It was the weekend of my 40th birthday.  My goal was to run sub 1:50.  No surprise, it snowed the night before so the conditions were horrible.  I didn’t freak out.  The snow was a blessing.  It made me start out slow.  Which was great.  Even with the slow start, I managed to pull off a 1:47 and change.  Perfect.  I was pumped.  I didn’t let the weather get me down.  I just went out and ran.  Lesson learned:  Don’t worry about things you don’t have control over, just go out and do your best.

My second half marathon was the Toronto Women’s Half in May.  I had been really looking forward to this race.  I had finally gotten back out with my running group so I had been getting some good speed work in.  I couldn’t WAIT to see what I was capable of.    The course was rolling and it was on bike paths so I figured it might be a bit challenging.  Bring it.   Race day was muggy and gross, but nothing that a few cups of water from some shirtless firefighters couldn’t help.  I busted my butt in this race.  Went out way too hard and paid for it near the end.  But I pushed through pain that normally would have me backing off.  I came out with a 1:41:39.  A new PB! And 5th place in my age group!  Lesson learned:  I’m tougher than I give myself credit for.

I went on a racing frenzy during the summer. It seemed like I raced almost every other weekend.   With each race, my results were better and better.  I started to get spots on the podium.  I won my age group a few times and then I actually snagged a women’s overall win.  Never in my wildest dreams did I think I’d have a year like this.  It took positivity to a whole new level.  I trained hard and continued to race all summer.  I learned to really listen to my body.   I went into each race with a positive outlook.  And a goal of working hard and giving it my all.   My new motto became leave it all on the race course.   This was a new thing for me.  I was always so cautious when I was racing.  What if I went out too hard?  What if I blew up?  No longer a concern.  I had faith in my abilities.    This was new to me!

As my 3rd and final race got closer, I thought about revisiting my goal time.  I was running the Scotiabank Half and it was flat so my husband said I should aim for 1:35.  In the back of my head, that became my new hard goal.  I recruited a friend from my running group to pace me.   This time I wanted to race smart and not go out too hard.   Race day I was calm cool and collected.  I knew I could do it.   Sub 1:40 would not be a problem.  Could I break 1:35?  If I raced smartly, and trusted my abilities, I figured I could.

In typical fashion I wanted to go out hard but my friend kept me in check.  I made a few mistakes early in the race that would have saved me some panic late in the race but at about 19km, I knew I was going to make it.  It would be close but I knew if I pushed myself I’d be ok.  Before I knew it I had hit the 500m mark.   I was overcome with emotion as I ran towards the finish line.  The culmination of a year of hard work was coming to a head.  The doors were finally closing on an old chapter of my life and opening on a new one.  I could see the clock counting down to 1:35.   I crossed the finish line in 1:34:48.   Amazing.  What was even more amazing was that I managed to place 6th in my age group out of 662 women.  6th!!!   When my husband told me that I burst into tears.  Tears of joy, amazement & thankfulness.

Lesson Learned:  Trust in your ability and most importantly believe in yourself.

I had exceeded my original goal by 5 minutes and I had crushed my PB from May by 6 minutes.    I never imagined I’d have a year like this.   All because I made the decision that 40 was going to be the best year of my life AND I actually did something about it.  I was amazed by the things that happened along the way.  I realized that my mindset has changed.  I’m no longer a glass half empty kinda gal.  I’m not quite at the glass half full point but I’m working on it.  2012 will be the year the glass becomes half full.  Of that I’m certain.

(Photo credit: Phaedra Kennedy)

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Moving On After A Disappointment

This morning I woke up with a heavy heart. I got up and half-heartedly made breakfast for my family. I put on a cheerful enough face as we all ate together, but Gerard could tell that I was not quite my usual self. As we were drinking our coffee, he asked me what was wrong.

“I was supposed to be running a race today,” I said.

That’s right, ladies and gentlemen. Today is the day I was supposed to line up at the start line of the Toronto Women’s Half-Marathon, run a gruelling but satisfying race, and be doused with water by shirtless firefighters.

But because of life getting in the way of my training all season, I was not able to run today. Since the beginning of the year it’s been one thing after another. Weather so bad that I just couldn’t face outdoor training. Me being sick. James being in hospital. Me being sick again. Gerard being faced with ridiculous work deadlines and therefore being unavailable to watch the kids. Planning a wedding.

I have not, at any point, stopped running altogether, so I’m in reasonable enough shape. But still, considering how sporadic my running has been, attempting a half-marathon today would have been sheer lunacy. I would have risked illness or injury or both, and I would have stood a better-than-average chance of sidelining myself for the rest of the season.

But still. Knowing that I did the right thing in forfeiting this race does not make me feel any better about it. My Facebook page is full of statuses and pictures of people who did run the race, and I am – well, jealous. I feel as if I missed out by not being there.

At the same time, though, I cannot allow myself to dwell on this. Sure, I could mope around all day lamenting the fact that I missed a race I registered for months ago, and have been looking forward to for ages. I could tell myself that running at all today is out of the question because Gerard is at work and I have no-one to watch the kids.

Or I can put on my running clothes, pull out the treadmill, and as much as I hate treadmill running, get in the 10km that I want to do today.

I am going to choose the second one. I am going indulge in my guilty pleasure (a DVD of Friends episodes) while I clock up some miles on my lab-rat machine. The good thing about this: it’s a treadmill that has a slight built-in incline, so it replicates outdoor running fairly well. It’s a lot harder to run on than the treadmills at the gym.

Because I have a big goal this year: to break two hours in a half-marathon. And I want to do it in the Scotiabank Toronto Waterfront Half-Marathon in October – my annual autism run. I want to break all kinds of records this year. I want to kick butt with my fundraising, and make lots of moolah to benefit people like my son – people who are loaded with potential that can be realized if the services are there. And I want smash last year’s time of 2:22:38.

It’ll be tough, but it’s never too late to start working towards it. I definitely won’t get there by sitting on my ass and feeling sorry for myself.

I do, however, stand a good chance of it if I start working towards my next race: a half-marathon in the Niagara region on July 18th. I’m not running this race with the intention of clocking up a specific time. I just want to gain the psychological advantage of having done a half-marathon this year: a practice run in preparation for the real thing.

So, this is my choice: I am going to write off today’s missed event as an unfortunate but necessary loss, and I am going to immediately start focusing on the race coming up.

I may have woken up feeling down this morning, but I am by no means out.

I am ready to pick myself up, dust myself off, and kick some serious ass.

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George’s New Hat

When my Mom came from South Africa for my wedding, she came bearing gifts for the boys. Among other things, each of them got a new hat. James wears his because it’s cool, and because none of his friends at school has an “Africa hat”. George wears his because he’s weird about hats. For George, a hat is not just a hat. It’s an essential part of his routine, one that he feels completely lost without.

George’s previous hat was provided by my Mom as well. She mailed it over to me about a year ago, and since then it’s been practically glued to his head (except for the times when I sneak it into the washing machine while he is sleeping). The new hat is identical to the old hat. It’s got the same “South Africa” lettering on it, and it has the same animal pictures in the same pattern. The only difference is that while the old hat was cream-coloured, the new hat is blue.

For George, switching hats is a big deal. Imagine what it would be like if someone decided to remove your head and replace it with a new one. It may seem like an extreme example, but that is, for George, what switching hats is like. He got so comfortable with the old one, and so used to it, that getting rid of it was an unbearable prospect, one that resulted in meltdowns and anxiety attacks (mostly on George’s part, but a little bit on mine too).

There were house guests galore for a couple of weeks leading up to the wedding, and that in itself was a lot for my routine-dependent child with autism. Gerard suggested that maybe this was not the time to switch hats on George, and I had to agree. So we left it for a while. By last weekend, things had quietened down considerably. The wedding was a week in the past, and the only guest remaining was my Mom.

During a rough-and-tumble moment of play, George’s hat fell off. On a whim, I grabbed it and shoved it into the washing machine (it was starting to smell a little gamey). I took out the new hat and put it on George’s head. Predictably, he went ballistic. Screaming, kicking, tossing the hat away from him, crying with utter distress.

Fortunately, the old hat was not an option. At that moment, it was wet and sudsy and being tossed around in the washing machine.  So there was no choice but to persevere with the new hat.

As George tossed himself screaming around the floor, I maneuvered him onto his back and sat on his legs, leaving his arms free. The hat was on the floor behind him, but within his reach. I looked into his eyes and started throwing out sums at him.

What’s four times five?

What’s three plus four?

What’s twenty minus six?

And so on. Each time I tossed out a question, George answered it. He seems to have a genuine love for numbers, and this technique is proving to be a surefire way of distracting him when he’s upset.

Sure enough, he gradually calmed down. When he started reciting times tables, I knew we were close. And then, slowly but surely, while he was still reciting his times tables, he reached behind him and casually put the new hat on his head.

It was a minor battle, but it was a battle nonetheless. And we won it, me and my boy.

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Determination Pays Off

This time, I was determined.

I was determined to drag my ass out of bed when my alarm went off, no matter how tired I felt, and go for a run.

I was determined to go for a real run – i.e. a road run – instead of wimping out because of the dark and the cold and going to the gym for an unsatisfying treadmill run.

I was determined not to make excuses, not to tell myself that I was too tired or too cold, not to let my mind convince me that the kids were going to wake up and create havoc the second I closed the front door behind me.

The first part of my plan, the waking up part, was easy. Through a series of nocturnal wanderings, I had found myself on the sofabed with the kids squished up on either side of me. I had slept uncomfortably, in an uncomfortable position, barely able to move as I was sandwiched between two dead-weight kids. Although I was tired, getting up and moving around was actually a relief.

I got into my running clothes, fumbled around in the dark for my training watch, and downed a bottle water.

My plan almost got derailed at that point when James woke up crying, saying that he had had a bad dream. I got him some milk and managed to convince him that I didn’t, in fact, need the longest sword in the world in order to slay the monster, and he went back to sleep. For a moment I hesitated: should I really go for a run knowing that my child was in distress?

I checked on James again: he was sleeping soundly, with not a sign of distress anywhere.

I looked for gloves, failed. I looked for a hat, failed. I looked for my lightweight running jacket, failed.

Hmmmm… Do I stay or do I go?

Go, I decided, reasoning that I had run plenty of times in colder conditions without all of that stuff. To borrow a phrase from a book I once read: What am I, woman or walrus?

OK, shoes on, music cued, out the door. I felt cold, but I knew that I would warm up quickly. I started the music, pressed “start” on my watch, and began running down the road.

For the first few minutes, all I wanted to do was stop. I felt stiff and had no rhythm, like a machine that hasn’t been oiled since the start of the Industrial Revolution. I kept going because a simple rule that I have: run for just one mile. If you still feel like crap, turn around and run back, and that way you will have at least got in a two-mile run. Chances are, though, that you will feel just fine after one mile and you’ll be able to keep going.

And sure enough, the first mile came and went, and I kept going without even having to make a conscious decision to do so. At some point during the second mile, I suddenly realized that the stiffness had disappeared and that I was actually enjoying myself.

Due to time constraints, I could not get out for a long run this morning. I had to make do with about 4 miles. But still, it was great. After the run I felt alive and invigorated, ready to face the day. And as always when I run despite not initially really feeling like it, I felt a wonderful sense of accomplishment.

I feel that I have overcome a small psychological barrier that I had put up over the course of this winter. I have been telling myself for weeks I cannot run on the road early in the morning because it’s still dark. But this morning I realized that I do not have that excuse anymore. I could see just fine, I felt perfectly safe, and I even exchanged cheerful waves with a couple of other runners.

I was determined to go for my run this morning, no matter what. My determination paid off, and now I feel great!

(Photo credit: Kirsten Doyle)