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.
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.
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 $45,000 to purchase a wheel chair accessible van as theirs was about to fall apart. It had no working stereo, no heat or air conditioning and could barely make it up a hill. Raising the money wasn’t too hard as I know a lot of amazing people who are beyond generous.
The final bit of funds for the van came a week before Ronnie, myself and our kids were to head to Manitoba for vacation. Karen (the kids mom) and I met at the bank and excitedly pulled out the funds….it was incredible, I had never held a check that large before. Her van arrived in the middle of July.
Literally weeks later Ronnie and I get the blow that our son has exactly what her kids have but worse. WHAT ARE THE CHANCES…… (this is where you say “what the F*&$ – 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
Very honest! Ishan and Shanaya are
My cousins and I know how much they adore you. It breaks my heart that you are now going through the same thing. I have been thinking of you daily, even though we’ve only met once or twice. I wish the best for your family.
Jess
Trust in the Providence of God
He will be with you in all of your daily challenges
When the going gets tough “God hurry up come to our assistance”
You all are in my daily prayers embraced in the “communion of Saints in heaven and on earth” Sr. Joxxx
Your story touched my heart. I am in awe of what you have done for Ishana and Shanaya and know that our God was preparing you for this journey through them. We may never know, while on this earth, the reasons for our struggles, but God will make it perfectly clear to you in His Time. May God give you the courage, strength and peace that you and your family need in the days, months and years ahead and may he bless you and your precious Lewiston with all that you need and desire. My continued prayers will be with you.
Thank you Carrie for your encouragement and continued prayers. Our God is not only a good God but one who has a sense of humour, and away of making all things for his good. I trust in his plan and purpose….although not always easy. I trust.
That was my first thought!! Our God is an awesome God! The reasons for His Will in our path isn’t always clear but in this case He said “understand, appreciate, and love these two kids because your own will need that understanding ten fold.” God’s power always shocks me. Prayers for a miracle!!
Jess and Ronnie, you two are incredible. May God help you down this sorrow- filled road.
THANKYOU for sharing your story Jess. I have tears in my eyes as I type this. I met your mother-in-law , Natalie, in junior high and we reconnected while Lexie & Jaclyn were in Young Canadians. Jaclyn is working with CTV and was at your interview during the filming …. She didn’t make the connection at the time. Your writing and sharing precious Lewistons life with love, honesty, a touch of humor and tremendous grace WILL somehow …. Somewhere make a DIFFERENCE to the lives of others and a MOVEMENT to further understand this illness. FEEL THE LOVE OF PEOPLE WHO HAVENT EVEN MET YOU MY DEAR!!!!!
Jess, your story breaks my heart. We are thinking of you and your family. You have an amazing outlook on a horrible situation. Your strength is admirable.
Jess, Tom and I are praying for you, if you need to talk we are available.mplease give our love to your mom and dad also.
Thank you so much Lee. Keep us in your prayers. Prayers for Gods purpose and prayers for our family.
Jessica, I’m pretty sure you won’t remember me. Once I explain the family connection you may have a vague recollection of who I am, but I think the last time I spent any time with you and your family was when you were between 1-2yrs of age. I am Ed and Lorraine Kroeker’s daughter Jennifer (my mom is your mom’s first cousin, so I guess that makes you and I 2nd cousins!) When you were such a small little one, I came to stay with your family as a “mother’s helper” for a few weeks one summer. I helped to care for you and your brother Joey. That’s been quite some time ago 🙂 and my memory is foggy as to the exact year that was but your mom may remember those details. When I read your story on Facebook a short while ago, my heart hurt for what your family is going through. My husband Billy and I have 3 kids – all who are much older than yours – but a mother’s heart can sympathize with another mom’s pains and struggles. I won’t even begin to have a good grasp on what you are living in right now; your day to day challenges, the roller coaster of emotions that I’m sure are a significant part of each day, and the unknown of what lies ahead. Please know that I am praying for you, your family, for Lewiston. The pictures I have seen show such a precious, handsome little man. From what you have shared in your posts, I’m confident you are holding on to the blessings that can be found in each moment, regardless of the circumstance. I will be praying for peace when your life seems anything but peaceful, for strength when all you feel is weakness, for thankfulness when the questions come crowding in and for a ever present assurance that God is at your side today, tomorrow and for always.
Thanks Jennifer. Of course I remember you. I remember being your flower girl….mostly I remember your dad. He was always so loving and caring towards me – he was my fav! Thank you for reaching out. Your words are so encouraging and it is such a blessing to know the support we have. In his grip, Jess
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