The morning after CURE’s benefit, I met up with a friend who had also recently lost a child. We walked around the outdoor Chriskindlmarket reflecting on the previous night and where we both go from here. We watched as folks sipped hot chocolate and picked out gifts for loved ones. It was not lost on either of us how altogether separate we felt from the holiday cheer surrounding us. Forgoing hot chocolate for some mulled wine (it’s 5 o’clock somewhere?), we sat in the dark together. 

We acknowledged that one of the reasons grief is so complicated is because it is filled with contradictory emotions: I would give just about anything to have Adelaide back in my arms but am relieved she is free of pain. I hate that Jackson lost his sister but am comforted that he can now experience a life not dictated by his sister’s precarious health. It is amazing to see the money raised for epilepsy research in her honor, the articles written and awareness spread, but why did she have to die to receive this level of attention? 

However, the most difficult contradiction to wrap our brains and hearts around is that our lives are otherwise pretty amazing. We have financial security and want for nothing. We have supportive, loving husbands. We each still have a healthy child. We have incredible communities holding us up. Without the knowledge of the unimaginable loss we have both endured, our lives look pretty picture perfect. I’m sure there is a lesson in here about focusing on what you have and not what you’ve lost but when what you’ve lost is a child that lesson rings a little flat.

So, here’s what I figure: Just as I hold many contradictory emotions during this time, I can also simultaneously grieve the loss of one of the great loves of my life AND be grateful for all the love still in my life. Being grateful doesn’t negate the loss and vice versa. In every other aspect of my life I am INCREDIBLY fortunate and I have to remember this because it is all the good that surrounds me that is going to help me move through the dark.

And it’s very dark right now. Adelaide was my life. Without her, for the first time in years, I find myself with an abundance of time. The reason for it sucks but in any other scenario I would view it as a gift. Because I can’t seem to find a return to sender option on this crappily wrapped gift, I’m going to accept it. Without a job or school to go back to, what comes next is entirely up to me - which is, again, contradictorily, terrifying and exciting. But I’m getting ahead of myself, I’m not there yet.

I had thought that by plowing through, continuing to fundraise and advocate, would help me heal. But I can see now it was only serving as a distraction. Any moment I was still, Adelaide’s absence would hit me hard, knocking me off my feet and right back to bed. But even there I would play silly cell phone games just to avoid the pain. As hard as it is, I need to face this grief and work through it. I don’t quite know what working through it is going to look like yet but I’m finally ready to figure that out. 

For the month of December I will be taking time away from the blog and from social media. I am giving myself permission to step away from advocacy and fundraising - unfortunately, epilepsy and other medically complex conditions will still be there waiting when I return. I will focus on my family, on myself and on Miss A’s memory so that I can move forward. Not past this pain, I know better than that, but with it.

Thank you does not come close to relaying the immense gratitude I feel to everyone who has reached out, sent cards or gifts, made meals, donated, or simply held our family in their thoughts. We have been taken aback by the love and support sent our way. Knowing how deeply Adelaide affected others lives has been unreal. I hope everyone had a delicious Thanksgiving and finds moments of joy during the rest of the holiday season. Until 2020…

All my love and thanks,

Kelly