My whole life I have shared of myself openly and in a very vulnerable way because I feared being alone more so then being judged. The thought of being dismissed, disregarded or tossed aside is one of my greatest fears. My reasoning has been if I share then I am bound to find someone to understand me – someone with who I can connect – someone to help me feel less alone. I seek someone to confirm I am not the only person who has had certain thoughts or experiences. After all, a shared experience tends to bring people together. Over the year’s people have been absolutely amazed at how much of myself I am willing to share. I have openly talked about my battles with anxiety, depression, infertility, autism, running, terrorism, cancer, death and not feeling good enough. Through it all I have been able to find someone to make me feel less alone. I have wonderful friends and acquaintances willing to share of themselves with me. On the flip side I have also shared the beautiful parts of my life – my unapologetic hopes, dreams and successes. For those who read my Blog I have provided a front row seat to my life. I am inviting you to pull up a chair for an entry that renders me vulnerable.
I am sitting at my desk in the S.Au.S. office with door closed. Tears streaming down my face with desperation in my heart. My team and I are preparing for the 11thAnnual Autism Awareness Run and I feel pangs of what I fear most. The feelings I am experiencing can best described as lonely. I feel that this time I am unable to find that person to share this with. I don’t know any other Autism Mama Bear who is running a charitable organization, who is out on the front lines fighting for families who desperately need someone to advocate for them, all while raising a boy with severe autism – who needs his mama to succeed not only in raising him but to fight for him – fight for his future – fight for his god damn life. Yes, tears continue to stream down my face as I write this because I am tired, overwhelmed, frustrated and scared. The thoughts of abandoning this work scare me more then the amount of tears I shed over the dark parts of being in this head space.
It seems that every time I make great strides as an autism advocate – one step forward then three steps back. April was once the month we hosted the Autism Awareness Run but it has come to mean “Autism Awareness Month” in a BIG meaningful way. Now more than ever it means being out there pounding the pavement as an autism advocate – meeting with government, doing TV and newspaper interviews, creating social media content, giving conferences and hustling to get everything organized for the end of the month, when we host our biggest fundraiser of the year. Imagine for a minute how stressful this can be. Every time I am asked questions about my work my heart pounds, I start to feel light headed and my palms begin to sweat. Sure when I share the interviews on line I look nice and composed but inside I know any minute and I might crack. I keep it together because I have to. My job is to be professional and represent the autism community. No pressure. I breath through it.
At one time the Autism Awareness was organized by my family and friends at the local Tim Horton’s or in my living room over a glass of wine. Now my small but mighty staff of 3 plus me get the job done. I am forever indebted to these women who execute their work so diligently – knowing that on race day it’s every woman for herself because I need a team I can count on. The one thing that is mine and mine alone is the responsibility of making it all work. I am the manager, the leader and the visionary behind S.Au.S in essence, I am the captain of this ship. If I hit the iceberg – everyone knows the story of the Titanic right?! I am responsible to ensure the money is there run the organize. It’s on me whether we sink or swim.
The weight of responsibility for all those families counting on me is immense. Everyone in this story has access to a life raft but me. No one shares the burden of responsibilities with me. Everyone here has a job with the option to call it quits at anytime. I on the other hand, do not have the luxury of choice. I am a woman of integrity and I will do what I said I would do. I promised that I would make a place in this world for my precious Keyan and others just like him. I have done so for the past 10 years and will continue to do so even if it kills me. So every time I speak, I share, I ask it’s not for me personally but for the hundreds of families who need me to do this work.
For the first time in our 10 year I am struggling with things beyond my control. Every year I have organized this event I have given it my best, a 110%. Even after the bombs at the 2013 Boston Marathon threatened my sanity and losing my father to cancer in 2014 (weeks prior to the run) – I still showed up and I still gave it all I had. I have never once thought I could get away with giving less. I have always given all of myself to this run because I believe in this event and the people it benefits. Those close to me know that I consider the AAR and S.Au.S. my 3rdchild – it all means that much to me.
I have been so happy with recent events surrounding my work until today I feel like I got hit with a ton of bricks. Even yesterday I was at HRHS giving a motivational talk to students on the importance of volunteerism. I preached that to be in service of others is a great component to a fulfilled life. I have addressed high school students for years on the topic of autism but yesterday was different because I was talking about so much more. What was most important was the fact that I wanted to make my daughter proud. Secretly, wanting my daughter to swell with pride – thinking wow that’s my mom up there. All that to say I was pleased with the outcome. So up until today I was feeling as thought I was in the FLOW.
With only 17 days left until the Autism Awareness Run it means it’s time to dot the i’s and cross the t’s. It’s what we call go time. I wasn’t ready for what was about to HIT me. I was aware registration was weaker then previous years but there are two valid reasons for that a) mother nature hasn’t been cooperative (after all it was snowing two days ago) and b) historically participants prefer to sign up the three weeks prior to the event (which is actually now). What I wasn’t prepared for was the astonishing lack of volunteers. Requests to be a volunteer have been coming in slow and steady but I didn’t realize that I didn’t have enough to cover the event. Last year I had twice the amount of volunteers I needed because I never refuse a teenager willing to show up at 7am on a Sunday to give of their time for a good cause. It feels as though my ship is going down and I am the only one left on board. The needs of the autism community are growing at an alarming rate doesn’t that mean more support for our cause?
This is why I am crying. Here I am giving my 110% - I thought the work I was doing was important – I thought it mattered. What would you do? I feel like I am beyond crazy to do this work. It’s too hard! Where is that one person to make me feel less alone or less crazy? For the first time I have to accept that there is no person – I am meant to be on this journey alone.
Again I am exposing the most sacred parts of me but I need to sit hear cry and write as a means to let it all go. I will never give up this fight because I would never give up on my son and daughter. Manisha needs me do this work for the sake of her brother and the future they one day have without Kunal and I. So I will continue to bring myself to the brink. I will continue to doubt myself. All I ask of you is to help me feel less alone – you can’t be that person but a kind word to help raise me up or be part of the AAR (participate or volunteer).
I am completely drained. I have cried on and off for an hour and a half as I write this blog entry. There will be no more tears because I need the energy to continue to give 110% to this event, the organization and the cause of autism. Thank you for supporting me and my work.
Your captain – Audrey