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The Joy of Being Tested

For me, birthdays are all about progression, with the key question being, “Am I in a better place this year than I was last year?” Admittedly, if I had to rate my 20s, it would garner mixed reviews. And as I whip through my 30s, I can honestly say that these are the best years. I was reminded of this recently as I celebrated my 37th birthday. For many reasons, this year will be unforgettable.

The first half of 2013 fiercely tested my patience and resolve. I experienced one of the busiest times professionally and was planning last month’s 3rd C&C, which was so amazing it deserves it own post! Click here. I also expanded my scope as a writer by signing on as the co-writer and creative consultant for my husband’s documentary about sickle cell disease, Inside Out: When Blood Hurts. Here’s the logline: “A relentless African-Canadian youth worker searches for answers about sickle cell anemia, a disease long thought to only plague those of African descent. But when the disease hits close to home, he struggles with his emotional connection as he interviews medical experts and those living with the invisible disorder.” I’m proud to say that Inside Out is quickly gaining recognition. Most notably by some of Canada’s top broadcasters, who at last month’s Innoversity Creative Summit selected Inside Out as the winner of the Short Film Pitch and Best Overall Pitch. Peep the teaser below.

In terms of how the disease “hits close to home,” check this. Our plan was to get tested at the same time so we would know our status before having children. But it didn’t work out that way. Sh-t got very real when I found I was pregnant before we could conduct our tests. Thankfully, I was tested as part of my prenatal care. Sh*t got even more real when my results came back and I found out that was a carrier of the sickle cell trait. I couldn’t believe it! I really thought that based on past discussions with my mom, my results would be negative. Now this. Furthermore, Sean still had yet to take his test. He had wanted to film it but we couldn’t afford to wait. I felt an overwhelming wave of fear, helplessness, anxiety and guilt for not getting tested sooner. I didn’t know if our baby’s okay and was prepared to whatever I needed to do to find out.

My doctor asked Sean to get tested ASAP in order for us to take the next steps. If he was a carrier, our baby had a 25% chance of having the disease. We would then need to go into counselling to prepare us for this possibility. The irony of the situation in relation to the documentary didn’t go unnoticed by us. The good folks at Taibu Community Health Centre were able to get Sean tested right away and in two days they confirmed that he wasn’t a carrier. Thank God! Our baby is okay, however there is still a 25% chance that our little one might have the trait. We’ll be testing baby as soon as our doctor gives us the green light. It certainly brought home the documentary’s key message: Know your status.

Earlier this month, Karlene Nation of CTV News did a story on the Innoversity Summit which featured Sean and Inside Out. This resulted in a follow up interview with Sean & I this week. Although I’m camera shy, I was more than happy to share our story. I’ll do anything I can to help bring awareness to sickle cell disease and encourage everyone to get tested. Our interview airs either this Saturday or Sunday.

CTV Interview - Sickle Cell

TAIBU Community Health Centre offers free testing, information and counselling. To learn more visit The Sickle Cell Association of Ontario, which works closely with Taibu, was also a huge help to us. Click here for more info about the wonderful they do. Special thanks to their Education Committee Chair Miss. Lillie Johnson, the 92 year old nurse, has been and continues to be a tireless champion for the sickle cell community.

As for our baby, he or she is healthy and strong. I would even go further and say that he or she is a spunky little one, full of sass with a curious sense of humour. Described as photogenic by our ultrasound tech, our baby is constantly on the move, refusing to stay in one place. We witnessed this during our ultrasounds and I am now (finally!) starting to feel this first hand. Every knock. Every bubble. Every tug. And yes, we definitely want to know if we’re having a boy or girl. Names have already been decided. As of this writing, we now know and are overjoyed!!!! Finally, we can call our little monkey by their proper name.

Before I go, check out these priceless gems below. If you’ve been reading this blog, following us on Facebook or attended Conversations & Cocktails you know that Sean is hilarious. He, in turn thinks I’m hilarious. So what you’re left with is our day-to-day lives being pure jokes. The HUE lights video is Sean’s way of trying to “improve our lives” for baby. Why he choose to do this at 12:30am on weeknight, while I’m trying to sleep, is beyond me. And the pizza video is Sean’s attempt to avoid giving my favourite pizza spot, Queen Margherita Pizza, the big ups it deserves. Best birthday dinner ever! /N

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