** I had some formatting issues with this post -- sorry!**
Sometimes, when Benjy is more dysregulated than usual, I have a hard time helping him. When he is at the apex of despair, or disabled by anxiety, or just off-kilter. Then I have to ask for help. More often than not, Lars is at work, and the person I lean on is Saskia.
Now, Saskia is far from perfect. She is, after all, a teenage girl -- need I say more? But she is a tremendous support to Benjy, and to me, when we really need her. We are lucky to have her in our lives.
I mentioned in an earlier post that I am doing some writing (beyond this blogging) about raising a child who wants to die. Here is what I have to say about Ben and Saksia in my personal essay, "Benjy, Awake":
Saskia, who shares none of Benjy’s challenges, is a sibling to Major Depressive Disorder, Generalized Anxiety Disorder, Panic Disorder with Agoraphobia, Claustrophobia, ADHD, and Obsessive Compulsive Disorder, as well as Autism. (For a while after a blow-out on the Mass Pike she was also a sister to PTSD.). Her normalcy is sometimes the only thing that keeps us from sinking under the weight of this business. How many times has she held us all aloft, firmly above the flood waters? And sometimes I think she must hate the lot of us. I would, if I were a thirteen-year-old girl caught in the maelstrom of this family’s dramas.
Saskia is never (okay, rarely) too busy to step in and hold Ben, read to him, play video games with him when he is too sad to function and I cannot pull him out of his sorrow. This morning, for example, he was needy. He had a get-together planned with a friend -- a rare occurrence! -- at 1, but it was only 10, and he was feeling empty. I was trying to grade papers, Saskia was watching TV with a friend who had spent the night. Lars was readying himself to go to work even though it's Sunday (it's crunch time at Software Central). And Benjy wanted to play Frisbee.
Lars played with him for fifteen minutes, then left for work. Ben crept back inside and curled up on the couch -- I glanced up and saw him lying there, before returning to my papers. Then I heard something. It was the sound of weeping. Ben was crying. He was hollow inside, and he was lonely, and he was sad.
I closed my laptop. "I'll just put on some clothes," I told him, "and we'll go play Frisbee." I was reluctant to ask Saskia to step in because she was with a friend, and she should be able to just be a 13-year-old girl sometimes, without the added burden of caring for her disabled brother.
But Saskia stepped in anyway. By the time I finished dressing she and her friend were outside with Ben. She was not put out. She was not resentful. She knows there is a kind of magic about her, that she embodies the antidote to Ben's depression. Not always, but often enough.
So that's Saskia. What would we do without her? I plan never to find out. I do worry that she's not having the carefree childhood I would wish for her, but I know that when we need her, she'll be there. <3