Big brother

Routine morning squishy cuddles

Routine morning squishy cuddles

Recently, Jackson was snuggling with Adelaide when she had a seizure. He didn’t get freaked out because he’s seen them hundreds of times before. Instead, he continued to support her and sang her song, “Adelaidey baby”, a simple lullaby that I made up when she was an infant. He told me he didn’t need my help with her because all he had to do was sing to her and the seizure would stop. Eventually, the seizure ended and Jackson said, “See! It worked!”. On Purple Day, March 26th, Jackson, with help from his dad, taught his class the lyrics to “Adelaidey baby” so that if they saw her having a seizure they would know how to stop it. And yes, it was just as adorable as you are imagining it was. Don’t worry we also discussed what they should ACTUALLY do if they saw someone having a seizure and what a seizure looks like in the first place. I don’t have the heart to tell Jackson that his singing doesn’t stop her seizures for so many reasons, but mostly because he gets to feel like he’s helping her - and I would give nearly anything to feel that confident satisfaction.

Last fall, I wrote about Jackson’s version of normal in my post “Jackson’s song”. If you haven’t read it, spoiler alert: it’s far from normal. Yet, in spite of it all he thrives and I’ve come to realize that I truly believe that he is thriving BECAUSE of her. It’s no secret that special needs sibling relationships are some of the most beautiful connections we can witness as humans. Jackson loves to help us with Adelaide in anyway he can, and sure, some of it is self-serving because he likes the positive attention he receives afterward. But just as often I’ll catch him doing something sweet for her when he doesn’t realize I’m watching. In turn, I know Adelaide has taught Jackson empathy and patience in spades. He feels ALL of his feelings, and often everyone else’s feelings, so deeply that I wonder if he is 6 or 16. To that end, these sibling relationships can also bring some scary situations and if not handled with care can become emotionally toxic. As parents, Miguel and I have done what we could to prevent Jackson from resenting his sister. We never want to hide her truth from him, but we do want to minimize the negative effects her illness has on his life. As a not-so-negative side effect of these efforts, it wasn’t until the last few months that Jackson started to grasp just how different his sister was from his friends’ siblings.

There is definitely only supposed to be one person in that chair at a time :)

There is definitely only supposed to be one person in that chair at a time :)

It’s been hard watching Jackson make this inevitable transition. I used to try so hard to see Adelaide through his eyes. He had no expectations for her, no knowledge of what she should be doing he just loved her, played with her and interacted with her without the slightest tinge of sadness. Oh, how I envied him for that. Most of the time he can still be with her in this way but as he navigates his growing understanding of her disability I can see the sadness creeping in. Jackson sees and hears everything - but obviously only when I wish he wouldn’t. Asking him to brush teeth so we can go to school? Nope, way to engrossed in the TV for that. Talking about our threshold for keeping Adelaide home vs getting her to the hospital? All ears. Adelaide has been in a fair amount of pain this week and we have no idea why or how to help her - its awful, I hate it, it sucks. None of this has escaped Jackson. Yesterday, before school, he hugged her as he always does and told her that he hopes she has a better day today. Then on the way home from school he asked how her day was and I told him she was still pretty uncomfortable. He then asked me if we had called Dr. Marcuccilli, her epileptologist, because he could help. I was stunned - first of all, he can barely remember our neighbors’ names, who he sees weekly, but can rattle off Adelaide’s doctor’s name as if they facetime on the reg. Second, he was confident that he knew what steps should be taken at this point… and was right! As a friendly reminder, he’s 6. Always. Listening.

Unsolicited hand-holding, Jan 2019

Unsolicited hand-holding, Jan 2019

Miguel and I have decided not to hide anything about Adelaide from Jackson and that we will always answer his questions in a way he can understand. That said, we don’t go out of our way to share the scarier truths and cross our fingers that we have some time before he starts slinging fastballs in our direction. I never want him to worry about her but that is inevitable I suppose. More and more I find myself reminding him that it is mommy and daddy’s job to worry about Adelaide, not his. I know what he is learning from her will far outweigh the negative impacts on his life but it doesn’t make it any easier to watch him work through emotions many adults have difficulty processing.

Even as we watch his naivety slip away I still see a big brother that loves his baby sister just a little too hard, smothering her with hugs and kisses until she cries out that she’s had enough. They still cuddle every morning without fail and he never leaves the house without hugging her goodbye, or goes to bed without kissing her goodnight. He swears that he can speak her “language” and often acts as interpreter. In a world where she is constantly coddled and cared for he treats her more normally than anyone else, pretending to wrestle or making up silly games and even letting her win…sometimes. I can’t even begin to fathom where their sibling relationship goes from here or predict how Jackson will navigate each realization about her future as they come to him. I do know that their bond is real and that for now they have each other - whether Adelaide appreciates those hard, smooshy, cheek kisses or not