Yesterday, February 29th, 2016 was Rare Disease Day. It was the first official Rare Disease Day to be celebrated in St. John's, Newfoundland, and our Mayor even proclaimed the last day of February to henceforth be (go with it....it just fits with "proclaimed", doesn't it?) Rare Disease Day. GREAT STUFF!! Anymore recognition we can get to Eli's rare condition and others like it, the better. Awareness creates acceptance and that's what we are ALL ABOUT.
I took the opportunity to attend the event that was planned and had a great time listening to Dr. Kathy Hodgkinson who spoke about why rare diseases are studied in Newfoundland (super interesting!), Lucy-Anne Vokey, a mother of a little girl with a rare condition (truthful and beautiful and had me fill up a couple of times) and Dr. Terry Kelly, a motivational speaker and musician who lost his sight at the age of two from a rare form of genetic cancer (this guy is pure positivity and light and I am so thankful I got to speak with him after his talk. The opening photo is of myself, Terry Kelly and my amazing friend, Julie Brocklehurst).
My biggest take away of the night is that we are all in this together. There is a whole community of people who are researching, advocating for and loving someone with a rare disease or condition. Dr. Terry Kelly said it best when he talked about making a "dream adjustment" to open the space for potential to just explode (blind kids playing hockey? Yep!! Just adjust a bit and give them a puck and nets that make different sounds and you have a hockey team!!!).
This talk of focusing on the potential of all humans got me to thinking about my original purpose of starting True Heart Tribe. I was starting to get frustrated with what I was reading about Cri du Chat and how it was all focusing on what Eli couldn't or wouldn't be able to do because of this, that or the other thing. I would read the information and then look at Eli and see nothing but pure potential. Beautiful, amazing POTENTIAL. It just didn't fit. I decided to use what I had been writing in my journal to shed light on something that was only written about with a negative slant. My goal? To be a website that pops up when someone Googles "Cri du Chat Syndrome" so that they can see a fuller, more realistic picture of the life of someone with this syndrome. To understand that, while there are challenges, there is SO MUCH BEAUTY.
Below is from when I was starting to get really tired of dealing with the constant focus on limitations while we were researching Cri du Chat. I wanted to read about the beautiful, fun, normal day-to-day stuff because what was out there just didn't match up with what I was experiencing with Eli. That type of information was very difficult to find. I was starting to formulate an idea of what I wanted to stand for in this journey and it became clear that I wanted it to be about seeing the human potential and shouting Eli's worth to all that would listen. This was the start of True Heart Tribe:
November 10th, 2014
I've got something to say about the information I am coming across in our research of Cri du Chat Syndrome. It is extremely skewed to show what people ARE NOT versus what they ARE or COULD BE. I am reading words like "delay", "low", "weak", "defect", "abnormal" over and over. I know that it is important to understand how a diagnosis might affect someone's life in order to create a therapy and treatment plan, but why can't I find information that uses words like "affectionate", "clever", "determined", "strong", "loving", "funny", "happy"? Those words adequately describe a human being who happens to have this or that syndrome or condition but are NEVER used.
The focus on what someone IS NOT continues to perpetuate a sense of "us and them" and the idea that people who happen to have a syndrome or condition are less than. It can scare the living daylights out of new parents who have just received a diagnosis for their precious child. The words float around in their heads until they are sick because the information does not offer up positive words to stitch together with the information they are reading to paint an accurate picture of what life will really be like.
When I first started researching, I couldn't get past the words used and I felt sad all the time. And then, you know what? I looked, REALLY looked, at my son who happens to have a rare genetic condition and saw that, while he may have certain challenges he is working on, he is an amazing little boy who works hard, communicates, laughs, smiles and loves. My baby boy will not be defined by words like "weak", "delay", or "abnormal", and we will not sell him short by focusing on what he may not be able to do. I would never want to be defined by what I can't do, why should it be okay to do it to him?
So! I am committing to write the words I want to see so that I can CREATE that full picture I desire to read. If ONE FAMILY that has just received a diagnosis reads it and sees a little light amidst all those negative words, then it will be a success. I will connect with other families with kids with rare diagnoses and invite them to tell the whole story of a syndrome or condition. To include those things that may need extra work while also weaving in the amazing attributes. That way, when someone learns about a syndrome or receives a diagnosis, they can see the work that needs to be done and also the beauty and potential and excitement in this life. Why not? What would be so bad about creating a fuller, more realistic picture? Until the day when someone looks at my son and sees his potential instead of pitying his perceived limitations, I will work tirelessly to show those around us just how normal, amazing, beautiful and inspiring our lives are.
I will shout his worth to anyone who will listen.
Love and light,