Things Worth Sharing

Hello world,

It’s been a while, hasn’t it? There has been so much going on lately and yet somehow when ever I write these posts they linger as drafts for far too long. I’m not sure where this new found stage fright has come from-but today feels like the right time to share some things.

Firstly, Georgina passed away. Let’s just get this out of the way. If you haven’t had a chance to read my blog post dedicated to her specifically, I would encourage you to do so before reading any further.

She died in June at 74 years young. Her passing has been a strange loss to grieve. Everyone is relieved to know she no longer suffers, but in that same breath the amount of acceptance around acknowledging the vast amount of suffering she carried day in and out for years, is a tough pill to swallow. My family travelled to Vancouver and brought her remains to the creek where she played as a young child. In her final years she spoke fondly of her childhood memories playing amongst the trees and swimming in the running water. Her celebration of life was beautiful. I’ve never been to a funeral or anything of the sort where I felt so happy to be where I was, experiencing what I was experiencing.

Not only did I have a sense of joy knowing Grammie would have been smiling ear to ear seeing us all in her favourite place; but all of us standing together in her honour united as a family after far too long.

It had been 11 years since I was in BC. Over 5 since I had connected with my family there. Being together, sharing stories, looking at all the photographs. My heart was so full.

On the day, guests from her family whom I’d never met as adult came to pay their respects as we celebrated safely and outdoors, only a few feet away from the property where Georgina grew up. On this day, I met family members who also have Osteogenisis Imperfecta. I couldn’t believe it. I guess I always knew they were out there in the world, but next to Grammie I’ve never been able to connect with anyone in my family who also has OI. I was floored. All though brief, it was a monumental experience for me. Full grown adults, living able bodied, with OI just like me! Wow.

We made jokes about dental implants, and Grammie’s 82 years old sister showed us how strong she was by doing some fast and impressive karate moves. It was adorable, and as I laughed my heart ached. Not everyone with OI has story that looks the way Georgina’s did. That was the biggest gift I could have ever asked for.

Tomorrow I have a bone density scan. A routine scan to monitor the status of my density since receiving my first bio phosphate treatment in 2017. I feel nervous, but prepared for all the possible outcomes. I guess the “worst” case scenario would be that it’s time for another dose. It’s a pretty awful experience that makes me quite unwell while my body absorbs the high potency drug-however it’s a treatment that works! There are just some pretty serious side effects that will effect my life differently then how they did when I was 26.

After each treatment there is 4-5 year window where pregnancy is not encouraged in women. How the drug effects the fetus, how the weight on your pelvic bones from pregnancy could be detrimental in the absorption phase. There’s a lot of huge consequences.

At the time motherhood and children felt light years away-but now approaching 30, another 4-5 years wait feels a little more heavy. I flip back and forth so often about wether or not it’s “a good idea” to have biological children of my own. I’m terrified of the suffering I could pass on, yet I know that with OI I have found so much additional purpose and beauty in my life, and I’m glad to be who I am. OI included.

The call of motherhood has been a treacherous journey with loads of bumps along the way and A LOT of therapy needed. I had suppressed it for so long because of my own experience as a young girl with OI, and being witness to an extreme case through the lens of a suffering family member.

For now, we’ll take it day by day. I’ll be sure to report back when I can. All I know is that everyday I feel less and less afraid of my disability. I feel so in touch with who I am, the OI part of me, and all the parts in between. That’s all I could have ever asked for leaving my 20s behind. I’m proud to be this version of me and that’s enough.

1 Comment

  1. Linda Figueira says:

    I love this post Emily and am so happy that you are feeling settled and content with your life. Sounds like Georgina’s send off was perfect. She so deserved it for all she had been through. Sending good vibes and love that you get the results you want from your scan.



Leave a Comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s