Like any doting parent I worry about my child. I want him to have friends, to be nurtured and challenged, and to find interests that he is passionate about or at the very least enjoys. I want him to be kind, confident and curious. I want him to be happy. 

I believe there is a tendency among modern-day parents to foster this type of environment by protecting our children from life’s more unsavory truths - specifically the existence of cruelty, suffering and death - for as long as possible. Creating these beautifully translucent bubbles where childhood naivety can thrive. Inevitably, though, that bubble is popped - for some children it is earlier than others - and then the question becomes how does the reality of the world effect our children who have been stripped of their bubble prematurely? There are too many ways that the world can bare itself early to a child, but I can only write about the one with which I am most familiar: the child that sees the medical suffering of their sibling, friend or family member and the child who becomes aware of our mortality long before they have the vocabulary to grasp its finality. 

As Adelaide’s older brother, Jackson naturally fell into a caregiver role with her. Not because we asked him to help take care of her, but because that was just one way we interacted with her and showed how much we cared about her. He WANTED to help care for her BECAUSE he loved her. So, I suppose, it felt natural to Jackson that when his sister died and I was publicly grieving that he would show how much he loved me by trying to take care of me. Sitting with me, hugging me, asking me how my day was. Simple gestures, sure, but they told me that he was always aware, always watching me, ready to leap into caregiver mode when needed. 

For the record, I realize that this role reversal is pretty screwed up. Jackson should not feel like he needs to take care of me and this is something I remind him of regularly. But I also recognize that this is just one way that Jackson has learned how to express his love for people. Because of Jackson’s desire to protect Miguel and me, he rarely speaks of his sister without one of us prompting the conversation. That said, I know he isn’t suppressing his memories of her because I will catch him looking through the memory box we made together before she died, or the photo album filled with pictures of the two of them together. 

I also know that he thinks about death, his own as well as mine and Miguel’s, more than the average child and I can’t dismiss the fears that arise from those thoughts because he is all too aware of the cruelty, suffering and death that is inevitable in our lives. The siblings of medically-complex children have their naivety stripped away one layer at a time when they witness a seizure, or wait at the window for the swirling lights of the ambulance, or are awoken by the shrill sounds of a pulse ox alarm in the middle of the night. Then, in some situations, the naivety is irreparably torn away, like duct tape on an open wound, when their sibling passes away. 

In the days since Adelaide’s death, Jackson has become exceedingly cautious and terrified of anything that could harm him. Perhaps, he would always have been this way, though that was not the way I imagined him heading when he used to climb up our stairs on the WRONG side of the banister. No, now he is acutely aware of the fragility of life - and once that gift is unwrapped there is no way to put it back in its box.

So, yes, I worry about all the regular things a parent worries about for their children. But I also worry that his naivety was taken too soon. 

And then he surprises me. 

Tuesday, the anniversary of Adelaide’s passing, I kept Jackson home from school for a family day. We watched videos of Adelaide, looked at pictures, shared memories, and then went to a farm to pick sunflowers.

When Jackson went back to school on Wednesday he asked his teacher if he could share why he had missed school. His teacher graciously permitted and Jackson told the class about his sister and answered questions about her epilepsy and disabilities. Then other classmates began to share about their own losses. That evening Jackson told me that it had felt good to share, to be listened to and better understood. Heartwarming was the specific word he used, (I swear somedays he is 9 going on 49). 

I am incredibly grateful to Jackson’s teacher for not only recognizing the moment and allowing a change to class plans - but also for creating an environment where the children felt comfortable sharing. Jackson’s bubble burst long before we were ready and, for better or worse, he may forever live a more cautious life and be more in tune to the moods of others - but he is going to be alright. 

As long as we create the spaces for our children to talk, as long as we listen and warmly fill their hearts, our kids will be alright.

This post shared with Jackson’s permission.