It’s been two years since our ordeal with Moyamoya began and frankly, I’m still processing it. I have some deep-rooted trauma about all that happened to our beautiful daughter and to us, as a family. I am still figuring out how to live our lives with this layered on top of all the normal stresses of family life. I haven’t written about it much but I should.
Most of what happened turned out to be incredibly positive, and for that I’m eternally grateful. Last year, we found it so healing to walk to raise money for The Hospital for Sick Children that this year we are doing it again. SickKids helped us through our darkest days and ultimately saved our daughter’s life. We want to help them support more families and kids through their tough times. I hope reading our story below will help you join our Great Camp Adventure, or start your own team! Only 9 sleeps to go!
Why I’m walking
Because a mother should never have to see her child in unimaginable pain.
Because a mother should never have to stand over her child’s body and wonder if she’s going to live.
Because if you knew you would have to stare fear and death and hell in the face, you’d be glad it was at SickKids.
Both of our kids (ages 8 and 10, now) are now seen by the Stroke Clinic at SickKids. Our son had his stroke some time between labour and delivery, which was confirmed by an MRI at SickKids on the fourth day of his life. He was fortunate to have a full recovery. (Brains are amazing!)
Two years ago, our daughter started to have migraines of increasing frequency and severity, which was misdiagnosed by our family physician. In early September, after exhibiting signs of a stroke, we ended up at SickKids ER. After a week of tests, she was diagnosed with Moyamoya Disease. (I know you’re going to Google this after, so I’ll save you the trouble. Read here.)
Her disease is a chronic, progressive and really rare cerebrovascular disease that causes constriction and narrowing of the carotid arteries and related veins that take blood to the brain. As it progresses it can cause strokes. Thanks to the neurologists at SickKids, we were fortunate to catch it before she had a stroke. We were put in the care of the amazing Dr. Peter Dirks, who performed the surgery that would save our daughter’s life and help her lead a mostly normal one. He gave her, and us, a future.
Our days at SickKids were trying. While her surgery was ultimately successful, it would take months before we knew if it worked. Within 12 hours of having the surgery, she did suffer a stroke that left her with left-sided weakness. While one side barely moved, the other side over-compensated and wouldn’t stop moving. Those were the hardest days. And through it all, everyone from the incredible nurses, to the surgeons and neurologists, the psychiatrist and social workers and the child life specialists, even our cleaning staff on the recovery floor – every single person we met was invested in our well-being, trying to bring us bits of comfort and moments of joy to our sweet little girl.
Things have improved incredibly in the two years that have passed. The journey was at times painfully slow, other times things progressed so quickly that we were astonished. We are all still healing a little bit at a time. But above all, we are so humbled and so grateful for everything we’ve been given, and we’d like to give back to the SickKids community, so that other families, other children can benefit.
And because I’m not all weepy sad stuff, last year I jumped into a kiddie pool full of ice and had the water poured over my head as a thank you. You can watch a clip here.
You can see pics from our amazing day at the Great Camp Adventure here: https://instagram.com/explore/tags/teamlucine/ — we are looking for more team members, so please feel free to email nadine[DOT]silverthorne[AT]gmail.com if interested.
I’m walking because Lucine can walk again. I’m walking so that SickKids can help more kids to find their way back to health. I hope you’ll help us reach our goal. DONATE NOW >
How can you not give to that face?