Mar 26

Mar 26 Preserving our purple

Ah, Purple Day. So many awareness days, it can actually feel overwhelming at times keeping up with them all. Don’t get me wrong, it is certainly better than the alternative - but nonetheless these days have long sparked a kind of desperation in me. When Adelaide was alive it was a desperation to make people pay attention, to try and get them to care even a sliver as much as I did about funding, research and inclusion. Since she has died, those desperate edges are no longer sharpened daily by seizures, though still acute from memories alone. What keeps me desperate on awareness days now is a need to connect and belong. Once you have a medically complex child with disabilities you inevitably see the world differently and just because my child is no longer alive doesn’t mean that this warrior mama filter is lifted. For example, I will never not cringe when I hear someone making typical, healthy, non-disabled plans for their unborn child. When you understand how many factors are at play, you can’t unknow, you know?

So here I am on Purple Day, celebrating epilepsy awareness, but without my child with epilepsy. I LOVE this community. I LOVE the people it has brought into my life, the lessons they have taught me and the empathy and understanding with which we support one another. Rationally I know that just because Adelaide is gone that doesn’t mean that some fictitious membership card is revoked. Yet, I still feel a desperate need to cling to this community especially on these awareness days.

My desperation runs even deeper than this though, beyond just wanting to connect myself. I want (need?) Miguel and Jackson to maintain their connection to this community as well. I think there are several reasons for this: for starters, the epilepsy and greater disability community made us more empathic, better humans. I HATE that Adelaide suffered the way she did and would gladly be a crappier person if she could be healthy and alive, but since I don’t get that choice I will embrace the positives. Like me, Miguel can never completely unknow a world with seizures and terrifying medical scares, but his filter can soften. Jackson on the other hand was only seven when Adelaide died - his filter will fade faster. This terrifies me. Look, I know he is not going to forget his sister, I’m not saying that, but he will forget details - he already is, it’s inevitable really. I mean, my own memories from age seven and younger are scarce and pretty blurry so I’m not sure what I expect. As we approach a year and a half without Adelaide I am on a mission to do all I can to help solidify her position in his mind. Not just so that he remembers her for the sake of remembering his sister, but also so he remembers the empathy she taught him and the unbiased way he interacted with other children who had varying disabilities.

Shortly after Adelaide passed away my mother sent me stacks of books on grief. Mixed in with those books was a grief workbook for Jackson - it’s more of a memory journal really - called “Missing You Sister”. It has various prompts to record his memories of his sister. So, a few weeks ago Jackson and I began filling out a couple pages each night before he goes to bed. Some of them ask about favorite foods while others are more provoking and ask about regrets and what is missed. Not only does it give us a quiet space to speak about Adelaide, my hope is that when he is older he will come across the journal and be reminded of his answers.

I’m also working on a photo album for Jackson that will have pictures of the two of them together. We have pictures of Adelaide all over our house of course, but it’s not the same as a photo album with birthday parties and visits to the pumpkin patch. Photographs that will engrain these memories in his mind as part of his recollection. Whether he has a memory of the photograph or the actual event, I’m not sure I really care, I just want him to remember the way he felt, that she was there and that he loved and accepted her.

Memories are fragile artifacts but unlike their physical counterparts they become stronger the more we handle them. So, the Cervantes family will wear our purple, we will talk about why we are wearing our purple and comment on social media posts in support of others’ aubergine ensembles. We will connect, I will cling and, in doing so, we will preserve our filters for a little bit longer.