This blog was never meant to make me famous. For as long as I can remember, I’ve written diaries, journaled or blogged about every aspect of my life, so when Jess and I got the life changing phone call that Lily was ours, it was only natural that I would document this new chapter that we were about to open. During Lily’s hospitalization and cardiac arrest, it became my primary method of communicating with our family and friends; it was much easier to write one blog post and hit “publish” than to call people and tell the same story over and over again and it left more time for me to focus on Lily and her needs. As time has passed, it has become my own outlet, the place that I can go and begin to type out all of the thoughts swirling around in my head that don’t make sense until I see them form on paper. There were other blogs, following the lives of Nella and Pip, that were bringing awareness to Down syndrome and reaching a much larger audience, but I had always hoped that by documenting our lives with Lily and all of her adventures, that if someone stumbled across it that it may be able to bring them a little hope or clarity to their own lives. A while ago, I had written about how I didn’t know what kind of Mom I would be, wondering about whether I should use my voice to advocate for adoption or Down syndrome, or CHD, or LGBT parenting, because it was hard to find a place where I felt that I actually “fit”. Then I realized something – I’m not just a Down syndrome mom, a heart mom, an adoptive LGBT mom – I’m all of these things and just like so many people out there, in so many different situations, no single label really fits. And really, hasn’t that been my point this entire time? My voice is both unique and identical and all I can do is keep using it to give the world my perspective and that’s what I have been trying to do.
After her son, Benjamin, was diagnosed with Down syndrome, Jamie started to have her own vision of how to reach out to other mom’s facing this unexpected journey. She saw a handwritten diary, filled with the voices of parents all over the globe sharing their own journey’s with Down syndrome. Out of this vision, came the Down Syndrome Diary, which has begun it’s travels throughout North America and into Europe and will eventually make it’s way to Toronto and into the hands of this momma, who will hopefully find the words worthy enough to be written – in pen! – and shared for years to come.
October is Down syndrome awareness month. 8 years ago, a blog challenge began called, “31 for 21“, to help bring this month alive on social media. The concept is simple: one blog post a day for the 31 days in October to help raise awareness of Trisomy 21 (the medical term for Down syndrome – you may also see it as T21). The posts don’t have to be specifically about Down syndrome, but are way to help showcase the lives of individuals and families who are lucky enough to be living with that extra 21st chromosome. For the first time this year, I’m hoping to tag along for the ride and hope that I have 31 days worth of posts to keep you entertained. I’m going to try and focus on something a little different in each post, so that you can see how all of Lily’s puzzle pieces fit together to make up one amazing kid.
So, until tomorrow, I’m going to leave you with one of my favourite video’s – one that I come back to time and time again whenever I have a day that needs a little sunshine…