Seeing my children’s grief can be worse than my own pain

Grief is weird. One day you seem perfectly fine, but the next day the pain is so intense that you don’t think you can physically breathe without your loved one. As a parent, I can’t imagine going through any worse kind of pain than what I’ve felt since losing Austen, my 9-year-old with Dravet syndrome.

But I’m not the only one in pain, and I’m not the only one who lost her. And one of the hardest parts about the grief process so far hasn’t been dealing with my pain, but with the grief of other family members who are also missing my baby.

Austen was the third of four siblings, and all my kids were very close. I come from a tight-knit family myself and have always preached to my children that at the end of the day, family is what matters most. They might fight like cats and dogs, but if you mess with one of them, you mess with all of them.

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Addi, 17, and Atlas, 11, have been with Austen from day one. They dredged through the dark days of Dravet syndrome right alongside her, and it took its toll on them. Anytime Austen had a seizure, Addi would set up her oxygen machine, and Atlas sat right next to her keeping the mask on her face. I think that going through those dark times brought them closer together. They certainly realized how fragile Austen was, and they were fiercely protective of her.

Grace, my youngest, did not come into Austen’s life until a year or so before her accident, but even though she was much younger than Austen, she quickly took on a big sister role. She would set Austen’s clothes out for her at night, help her brush her hair, and even fix it for her if we were going out.

The toll on my children

Watching my children grieve for their sister has been one of the hardest things I’ve ever had to do. As a parent, you’re supposed to be able to fix your children’s pain, but in this situation, I’m helpless. I can’t tell them it’ll be OK; I can’t tell them it’ll go away. All I can say to them is that we’ll find a way to move forward, even if I’m not sure how yet.

For a while, I thought that the loss of Austen was going to tear my family apart, that the strong bonds I’d worked so hard to cultivate between my children would simply crumble like the dirt next to their sister’s grave.

Addi, in her role as the oldest, maintained a relationship with each of her younger siblings. But I think Austen had been the glue that had bonded Atlas and Grace. Without her, there was a chasm, and they couldn’t seem to cross it even though they shared a room. They barely spoke to each other, and when they did, they were arguing.

In the past few weeks, though, something has changed.

In the car the other day, Atlas told me he’d cried at school, that he’d overheard some girls talking about how they missed Austen, and it just choked him up. He said he went to the bathroom and just cried.

Atlas has several family members who go to school with him, Grace included, and a family member who works there, too. I asked him why he didn’t talk to anyone about how he was feeling. He said he didn’t want to bother anyone with his feelings, that it was hard to talk to other kids who weren’t going through it.

I reminded him that Grace was going through it, too, that she’d lost her best friend just like he had. I suggested that they talk to each other if they need an ear because they were the only two people in their school going through the same thing at that moment.

Something must have clicked. Since then, seemingly suddenly, Atlas and Grace are getting along great. They still have their squabbles, but they’re playing together and talking with each other. I’ve seen such an improvement in both of their demeanors, and even a few moments of true happiness between them.

I don’t think the world will ever feel whole again for my family. We’ll always feel like a part of us is missing because it is. But as long as we hold onto one another, I think we’ll continue to move forward. That doesn’t mean we’ll leave the heartache and grief fully behind, but instead, we’ll incorporate it into ourselves. We’ll pick it up and pack it into our new normal.

I don’t know what the future holds for my life or my family. But I know I can keep going as long as we’re together.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.

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