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2020 Twenty: Become an Advocate

I've seen this day approaching now for a couple of months. Today, January 15th is our D-Day for Madison. D-Day is the diagnosis day for special needs families. This is my first one. Well, technically that's not true. See, I've got three (first year) D-Days within 70 days of each other.

On December 13, 2018 Ethan was diagnosed with Autism. I went through the holidays last year in a daze surrounded by this cloud of anger and uncertainty, but it didn't crush me. In my mind, Autism was just a speed bump. I didn't even believe the diagnosis. Have you met Ethan? Sure, he's unique and has an overabundance of energy mixed in with an incredible personality... but that doesn't mean there is anything wrong with him. The year that has followed has proven otherwise, but at the time I couldn't see it. Regardless, his specific D-Day doesn't mean anything to me because in my mind, nothing significant changed.

70 days later, on February 21, 2019 I went to see my neurologist for this weird thing that was happening in my legs. They had been "sleeping" for about six weeks. You know that tingly feeling you get if you've cut off blood flow to a limb for too long? Yeah... that's what I had been living with for weeks! Turns out, this confirmed an MS diagnosis. I was sent in for a 90 minute MRI and full blood panel, but the writing was on the wall. It would become my own D-Day. You can read more about this HERE. But life went on... immediately. The next morning I woke up and had three kids to take care of and raise. It didn't change anything significant either.

But in the middle of those two diagnosis', was the one that killed me. The one I'll never forget. The one where the "D-Day" will always haunt me. On January 15, 2019 Madison was diagnosed with Rett Syndrome.

In a single moment, dreams died, plans changed, fears arose, emotions erupted, tears flowed and millions of questions would go unanswered likely for the rest of my life.

The picture above, which you've seen me use numerous times in the past year was taken at 3:16PM as we emerged from the BC Children's Hospital after five hours of appointments confirming the diagnosis. It has become the picture that defined 2019 for me. Lots of things changed that day. Not "everything" like a lot of people in this situation claim. Because ironically Madison didn't change one little bit between January 14th and January 15th. So don't tell me "everything changed", because not even the core subject matter changed. But a lot of the things I was selfishly clinging to changed. Some things even died that day.

But look at Madison. Does that look like someone who has just been handed a death sentence? You know, January 14th (the day before D-Day) was a much tougher day for me. See, I had a gut feeling Madison was going to be diagnosed with Rett prior to the trip. It's a disease with some pretty unique signs and symptoms. So, as I loaded Madison up for our very first Daddy/Daughter road trip, something didn't feel right. It was nothing like I had imagined or dreamed our first road trip would be. We weren’t heading off to a dance recital or a music festival, no, we were heading to the BC Children’s Hospital to get a diagnosis of the rarest of rare genetic disease.

I cried half of the way there feeling like I was driving my daughter to her demise. Like I was taking this innocent, unaware, sweet little girl to the slaughterhouse. I kept looking back at her, consistently making eye contact with her every single time as she sat there silently and contently enjoying the drive. This made me cry even more realizing just how unaware she was.

And then it hit me! She was completely unaware. What was a horrible feeling trip for me, meant nothing to her. She was content. She was happy. She was loving the one on one time with me. She didn’t make a sound for four hours! Well except for when I tried to play Prince - she’s not a fan!

With this new realization I thought, “sure, we are on a stressful, depressing trip to the hospital, but she doesn’t know that... why can’t we have a little fun?!? Why can’t we make some memories?

So, I veered off the highway and headed to my favourite little coffee house. The Blue Moose. Turned out to be the best decision of the day! And don’t even get me started on how ironic it is that this coffee house is in a town named HOPE. Trust me, that detail wasn’t lost on me.

One year later...

It still feels like I've been run over by a bus. My life has changed drastically and 2019 was a year where survival was the only goal. It's been a lonely year; because I haven't met anyone in the entire world who can empathize with what I've gone through in the past year. I'm a dad... nope, I'm a stay-at-home dad... nope, I'm a stay-at-home dad of twins and a sibling only 20 months older... nope, I'm a stay-at-home dad of a special needs child... nope, three special needs children... nope, I'm a dad struggling with my own invisible disease... nope,

I'm all the above!

I never had many friends to begin with, but most of them have slowly slipped away this year for various reasons.

  • "I'm not spontaneous enough" (sorry dude, it's literally impossible for me to get all three of my kids ready to go and out the door for an all day excursion with only 35 minutes notice).

  • "I'm too negative/too honest with my feelings and emotions" (I'll accept the "too honest" part... but what's wrong with that?)

  • "I'm dealing with too much stuff, and have my hands full" (ya know what, why don't you let ME decide how much I can handle... because what you may not know about me, is I'm a pretty good multi-tasker, and if I want you as a friend, I'm gonna move mountains to ensure I have time to invest into a relationship with you)

But even if these "friendships" had survived, I probably would have just been frustrated, because it's been virtually impossible for me to find anyone I can make a connection with anymore. Its amazing to me how having kids changes everything and my friend circle changed drastically. It amazed me even more for that to happen all over again after my kids were diagnoses with special needs.

So, I've spent my year alone slowly learning to embrace the changes. I've made it my mission to learn as much as possible about Autism, Rett Syndrome, MS and Anxiety Disorder. I've gotten to know each of my kids better, while not allowing their diagnosis define who they are. I hired a team of doctors and therapists and began working with them on a daily basis, and while I know it's not a cure... I have seen progress in each one of my kids.

Through it all, I found my voice, while ironically all three of my kids are still literally searching for theirs. I began blogging again and telling my story. I began connecting with people and received hundreds of messages encouraging me to continue sharing. People told me my story was inspiring and encouraging. People called me a captivating storyteller and told me that I had a way with words. Friends and strangers alike loved how I was advocating for my kids.

And all of a sudden it dawned on me; it started to make sense. My whole life had been preparing me for this year (and beyond). All the experiences and trials I’ve gone through had been getting me ready and strengthening me for the fight of all fights. I had learnt how to react, I had realized that life is never fair, and I had figured out how to survive in the toughest of times. I had become resilient.

Discovering this about myself, I knew what I had to do. It may even be my calling...

I need to be a voice for my kids who literally don't have one. I need to advocate for them. I need to educate those around me or those within my reach who are willing to listen. I need to inspire, help and encourage others who are going through similar things. I need to make a difference in someone's life, even if it's just my own.

I need to use my voice. I need to become an advocate.



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