Okay so a little background as to why this is totally CRAZY and how I know so much about SMA Spinal Muscular Atrophy. Chances are you have never heard about it.

I moved to Calgary 10 years ago on October 17, 2006. I was young and dumb with only $300 in my bank account, no job, and not enough money to make first months rent.  I got a job that ended up not working out (it only lasted 8 months)…..the culture wasn’t great and the manager at the time disliked me so it made for an uncomfortable work environment. I know many of you are thinking….”how was Jess not liked?”….shocking right (hear the sarcasm in my voice). Okay but seriously I am pretty likeable.

Anyway I quit and was again looking for something. After 2 weeks of searching I remember being very frustrated that I hadn’t found the perfect fit. I was hard working, dedicated, reliable and very driven. I had moved to Calgary to really kick start my career.  I questioned how nobody wanted all of this talent, again sarcasm. {Don’t take me too seriously…I need a little bit of humour if I am gonna make it through this journey.}

A friend suggested we do a pro’s and con’s list of what I knew I would want and what I wouldn’t want to do. The first thing I blurted out was ” I know I would never want to work with handicap kids because they disgust me…..” Yep I said it. {Shoot me I am a terrible person.} But admit it you have probably said things that you shouldn’t have said, so take a deep breath and keep reading. Sorry but I am not perfect – again shocking.  I want to be  a 100%  honest with this story and am not gonna sugar coat it. My friend and I continued on making this list to help me narrow down my career search.

Literally a week later the Sunday school rooms were short staffed at Church and since I was on the volunteer list I got asked in. Rather than attending service I went with my best friend Carrie and helped out. We got thrown in the room filled with 6 year old boys, with way too much energy.  All of them yelling and running around…except for one cute boy in the corner. He was sitting there in a wheelchair unable to move. As I approached him I could see his hands were weak. I asked him if I could push him around so he could keep up to the other boys. He smiled and off we went.

 

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At the end of the service I asked Ishan, this cute little boy who was bound to a wheel chair if I could meet his parents. He said of course and off we went to find them. I met his dad and mentioned I was in-between jobs and had a lot of free time so if they ever needed an extra hand I was happy to help. I even let them know I had my criminal record background check and that for the most part I was a decent person, no major crimes had been committed – again sarcasm. Ishan’s dad asked if I would wait so I could meet his wife. I said of course!

Seconds later comes his wife pushing another girl in a wheel chair. Ishan had a little sister two years younger than him and she was also unable to walk and bound to a wheelchair, her hands also too weak to move herself. Both of Ishan and Shanaya had SMA – Type 2 – read more on SMA here.  Looking at these 2 kids the last thing they did was disgust me…in fact they were adorable, sweet and totally melted my heart. Polite, funny, patient, and very compassionate.  After offering my services again, they asked how soon I could start. I said tomorrow and the rest was history.

I fell in love with these kids. My heart burdened for them as they couldn’t walk, or run, or skip, or jump. In fact they had trouble blowing their own nose, lifting a fork, even a small glass of water was sometimes too much. I wanted to do something…I wanted to fix this so badly.  After that first full day I drove home with a heavy heart. I balled my face off, the hot tears just flowed. I tucked them into bed that night and I remember so clearly them praying to God to allow them to walk one day….knowing all too well the disease of SMA just gets worse not easier. The road ahead was a long one.

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Over the past nine years I have taken the kids to my parents farm twice, I have stayed with them for weeks at a time so their parents could get some much needed rest, I have raised money for school trips, helped purchased bikes that were fitted for special needs, and most recently helped them raise over $45,000 to purchase a wheel chair accessible van as theirs was about to fall apart.  It had no working stereo, no heat or air conditioning and could barely make it up a hill. Raising the money wasn’t too hard as I know a lot of amazing people who are beyond generous.

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The final bit of funds for the van came a week before Ronnie, myself and our kids were to head to Manitoba for vacation. Karen (the kids mom) and I met at the bank and excitedly pulled out the funds….it was incredible, I had never held a check that large before.  Her van arrived in the middle of July.

Literally weeks later Ronnie and I get the blow that our son has exactly what her kids have but worse. WHAT ARE THE CHANCES…… (this is where you say “what the F*&$ – sorry to my Aunt K but there really are no other words)

…..this is just CRAZY.  What once “disgusted me” is now my reality. My case different than the kids, as our son is diagnosed with SMA type 1. Meaning his life expectancy is less than 2 years and our Pediatric Neurologist is preparing us for less than a year.

CRAZY how life throws you curve balls…..one minute you are hanging with the family at the lake for summer vacation and the next in a hospital room receiving news that your child is dying and likely won’t make his first birthday.

 

I have a lot of questions……most I am sure I will never get the answers to. What I do know is that God is good, and that he is faithful even when it doesn’t feel like it. He will not waste this opportunity, so nor will I. I am trusting that this story will reach out to someone and make a difference. Trusting that all this pain and sorrow we feel will be worth it.  I already see God at work in so many different ways. To this crisis I am facing –  I will choose joy, I will choose strength, I will choose my response as life is precious and I am not gonna waste it feeling sorry for myself. Making the most of the days ahead.

 

In His Grace,

 

Jess