I got kicked out.
It took 5 months. Well actually like 3 months, but who's counting? Let me explain. Those of us in the SUDC community have one place to turn for support services. That organization is currently the singular source for information on SUDC, family support services, public awareness and research initiatives. When Vail died, Steve and I found our way to this organization and were grateful to have access to their information and to their support services. Well, at least I was, Steve never signed up for support services. I did. I signed up and utilized the family support services, predominantly the online facebook support group. Through this group, I have made friends, shed gallons of tears, and connected with other moms and dads who have so tragically lost their children. I am blessed to have had the opportunity to meet and establish relationships over our shared losses. This new phase of my life, "after" as I no-so-affectionately like to call it, is mostly filled with my 'new' friends. My SUDC friends. The people who understand who I am now and accept the new me. They are the only people who can begin to understand the loss, the pain, and fall out.
I never signed up to be an ambassador, or represent this organization in any way. My only contribution has been to actively support other grieving parents. A few weeks ago, there was an update in the organizations policies. Anyone wishing to do any awareness or media appearances had to clear it with the leadership first. After having multiple conversations with other SUDC parents about this policy, it came to my attention that several moms had been previously kicked out for excessively discussing their anti-vax beliefs. Another mom had been reprimanded for giving lectures in the medical community (she is a physician) without approval, among other things. None of this sat well with me.
Then last week, I emailed the organization asking for a list of contact info for all of the Colorado based SUDC families. I wanted to invite them all to the event I am planning for Vail's birthday in early May. It is going to be a birthday party themed family fun day. It seemed like a good way to meet and connect with some of the other SUDC parents in proximity to us. Plus I can use all the friends I can get. I got an email back requesting that we have a talk about my awareness efforts. To be fair, they had requested to have this conversation with me a few times, after my two local tv appearances. Honestly, I didn't (and still don't) feel like I need to clear my awareness efforts, or the telling of my story with anyone. Vail is my child and her loss is my story. I'll tell it whenever, wherever, and however I see fit. So the policy and the request to talk put me on the defensive. Maybe it shouldn't have. But I am a grieving mother, doing what I can to establish Vail's legacy and make changes in the world, as best I can. I think I have earned a little leeway. So when my simple request was met with the need for a conversation about my efforts, I just didn't feel like having it. It was going to be a waste of time. They were going to tell me I needed to follow the policy of discussing my efforts in advance so that we can all present a clear and consistent message (translation-get approval) and I knew that I wasn't going to be able to agree.
Plus, my plate is full. Steve and I are busy every day with The Vail Monitor product development, business start up, and capital raise. My duties to The Vail Project are growing every day and I have Vail's birthday to plan for. On top of that, I am a wife and a mother and despite failing at those duties fairly regularly now, I still need to do my best to be there for my family. At the end of the list is my grief. Which is overwhelming and dark and ugly and painful and a sad type of torture that haunts my every waking minute. So I don't really spend time on things, or calls that don't fit into my priorities right now. That's why I sent them an email. It detailed out why I couldn't and wouldn't follow the policy. Mostly because I am not an employee or volunteer at the organization and I don't think that such a policy should apply to me when I am not either one of those things. All I am to them is a member of the SUDC grieving community and a mom who utilizes their online support group. A quick response was received. We understand and will therefore remove you from our community resources. At first I was hurt and shocked that my refusal to act like a volunteer or employee and request permission or approval as if I were one would create the end result of being kicked out of a grief support group. But then I just laughed. It's par for the course.
So one of my friends, Dr. Denise Wunderler and I sat down to discuss our disheartened view of the only organization representing SUDC and then dreamed up the SUDC Coalition. A non-profit organization with goals to create awareness and fund research, but more over to bring together the smaller SUDC non-profits, like The Vail Project so that we can collectively work together. Giving these smaller organizations power over what their donations pay for and input in the initiatives of the coalition. Denise and I worked diligently to start this coalition and we are proud to present it today. I hope you will take the time and look through the site, which is only the beginning of what we hope to bring to our community. The SUDC community. Of which we are all members, every one who has lost a child, everyone who knows someone who has lost a child. Every person, despite their affiliation is a member of this community, just like we are all members of a global community...humanity. We can't leave that club any easier than I can leave the SUDC community. I lost my child to SUDC. I'm in for life. But believe me, I wish it was just that easy to stop being a member. Oh if it was that easy. I would gladly not know the sorrow of the other parents, of my own family. I'd rather not look on all the beautiful faces of the children lost for unknown reasons. I'd quit this club in a heartbeat if I could. I wish a swift email could change my parental status back to normal. Nothing can do that. No group membership (or lack thereof) can alter my loss. My status as an SUDC mom is permanent. This is my life now. And I choose to spend it aggressively advocating for more awareness and research any way I can, and I won't apologize or ask permission for that.
Denise and I believe that any cause worth fighting for is worth doing so with love and grace. We intend to do that through the SUDC Coalition. We believe that our cause is just and that a need this great has room for more than one dedicated non-profit organization. There is room for more than one group funding new research, raising awareness and providing a home for those who have lost. It's not a competition. In fact, I am very grateful for all the work that has been done and continues to be done by anyone and everyone willing to do it. We need more. And when we get that, we will need yet even more. Join us. You can find it all here: www.sudccoalition.com