Eli is about to turn 2 next week and I just can't believe it. These past couple of years have been more life changing than any other time and I am so thankful for them. Having a child with exceptionalities can throw you for a loop, let me tell you, but it also brings little gems into your life so that when you look back over the years you go, "WOW! I can't imagine my life any other way".
While some would assume that having a child with exceptionalities would take away from a parent experiencing life, I can tell you that it has done just the opposite for me and my family. Eli's diagnosis did bring sadness with it but it also brought love, appreciation and joy and an intense commitment to advocacy and raising awareness of a rare and beautiful way of life. It flipped motherhood upside down for me and made me see a different perspective. I have never felt more purpose in my life. I have never felt more focused on a goal. I really feel that I have found my True North.
Years ago I was planning to become a writer but I made different decisions and I ended up just keeping all my scribblings to myself, in my journals. I had amazing jobs and met amazing people from all over the country but I still felt like I didn't have "my purpose". When Maeve was born it was like my heart exploded in brilliant technicolour. Being a mama was what I was made for. I loved every second of it. I missed her when she went to bed and couldn't wait for her to wake up in the morning. It was hard, it was tiring, it was beautiful and so joyous. When Eli was born it was doubled. I actually love these two beings so much I feel like my heart could burst. What a blessing!!
After I moved through the grief of Eli's diagnosis (not an easy road but one full of feeling and introspection), I saw a gleaming gem right in front of me. It was a light that I couldn't ignore and a world that I was just learning about. I knew that I needed to start writing again but this time it had to be OUT THERE. It had to reach people. I was scared of it and unsure of myself but I knew it needed to happen. I needed to be an active part of this experience through writing. If I could reach just one family and let them see that life with a child with exceptionalities can be beautiful and inspiring and exciting, then I will have achieved something.
The funny thing? There have been so many amazing gems that have happened since I put myself out there. I have met the most amazing families of children with exceptionalities and these friendships span the globe. I have created partnerships with people doing amazing things in the community and can't wait to bring ideas around inclusion and acceptance to reality. I have an opportunity to help create a business that includes services to children in the Special Needs community. Just recently, I have been asked to speak at the Newfoundland and Labrador Association for Community Living's 60th Anniversary Conference. The panel I will be a part of? Friendship and the Value of Social Connections. AMAZING! All of these things have given me a spark of passion that I haven't ever had. My purpose, it seems, has been more fully realized with Eli's diagnosis. He has helped me find this purpose, this True North.
As amazing as this is, there is a tricky side to it all. Advocating for a purpose, you put yourself all in and surround yourself with ideas and people and writings that have to do with the CAUSE you are advocating for. What is most important though, is not losing focus of THE PERSON you are advocating for. This blog is MY voice, NOT Eli's or Maeve's and I need to be very careful with what I write so that they are treated with complete respect through this process. Issues around privacy come up and making sure I don't write something that would embarrass their future 13-year-old selves can be tricky. I always run what I write through a filter with this in mind. If there is any doubt, I scrap the idea and move on to another one. While my kids, and especially Eli's diagnosis of Cri du Chat, has helped me find MY True North, I keep in mind that they have their very own True North, their very own purpose. I can write from my own perspective but I am NOT their voice. They have their own thoughts and perspectives and these need to be honoured as they grow and develop.
I am so thankful to my kids for helping to guide me in this life. They are such teachers in every aspect of the word. They teach me mindfulness, patience, unconditional love and purpose. They also give me sleepless nights, a messy house and never allow me to have clean clothes on my body, but, hey, who's keeping tabs???
Love and light,