This week we welcome guest blogger Lisa Wasikowski sharing a heartfelt story about some of the struggles and laughter she experiences with her daughter.
Right now, my daughter’s head is in my lap, resting between the first waves of a bad seizure episode. It’s going to be a long day. She’s medicated, as comfortable as she can be, her hand in mine, in it together until the end – as we do.
She was born into a medically sensitive body. Our lives revolve around her needs, but it’s our duty as her parents, also our privilege as her human creators, to walk the walk right along with her. Her soul is her own. We are simply here to help guide her, to protect her, and to love her unconditionally. She’s as much our teacher as we are hers. Life isn’t easy around here, but every path has its complications. Her smile, her wit, her deep belly laughs, her drive, her perseverance, her way of navigating through all the ups and downs leaves us in awe. At her core, she’s a pillar of love, a true people person, and a big bag of mischief.
I have paralyzing social anxiety, so my preference is to sit in the background, just observe. She doesn’t care. I mean… she doesn’t’ want me to be uncomfortable, but to her, connection is everything. It’s an interesting dynamic. By default, I’m usually lured into her limelight. For her, it’s her best life lived. For me, it’s an anxiety attack in the waiting.
She makes friends wherever she goes. I’m just along for the ride.
One summer, I think she was about a year old, my husband, brother-in-law, and I took her to a concert at Chateau Ste Michelle. The families with little ones sat in the way way back. My husband set out a blanket for us to sit on, made sure I had all the necessary tools to survive the time he’d be gone while in search of dinner. She greeted every person who walked by, as she does, happy to shake hands, slap high-fives, and give hugs to those in need. A man dressed in white walked toward us. He stopped dead in his tracks. She suddenly looked up. They locked eyes, and maintained solid eye contact for a number of minutes. Laser focus, affixed, engrossed, a blessed exchange between two strangers on a crowded lawn. He looked at me. Tears welled, and streamed down his face. He asked if I’m responsible for her existence. I said yes. He thanked me as though I’d planned this divine event, and started to walk away as he wiped his tears. She reached out for a high-five. He complied, and whispered to me that she’s amazing. I nodded in agreement, thanked him for that moment.
Wasn’t the first time such a connection happened with her, certainly not the last. We’re seven years down the road together now. While it’s one of my favorite things about her, I’m still not used to it.
Then some days, we might be on our way to an appointment and she devolves into a seizure-episode, seemingly out of nowhere. Just about an hour ago, a block and a half from the clinic, she had a death grip on the sides car seat, head turned to the side to avoid the reflection of headlights, as her eyes flip flopped up and down, back and forth, and guttural screams of pain carried me to that place I go when panic sets in and there’s no one else around. In an instant everything can change, and we’re on autopilot, back to home. At first, I thought she was upset with my choice of music. One look at her, I knew. Every second feels like an hour, every moan of pain, every wince, every uncontrolled shrug, every bit of effort to hold it together becomes part of me. Her pain is my pain. Her struggle is my struggle. I am right there with her, until the very end, and it’s torture for us both. Oh, what I wouldn’t do to just run for the hills. We’re seven years down the road together and I’m not used to this either.
Some days are merely reminders she’s human, and how delicate she can be. In many ways, she lives beyond the bounds of her body. In other ways she’s held captive.
She has the innate ability to not give a hoot about what other people think, including me, especially when it comes to acceptance. She was born sick, knew from the very beginning what struggling meant, had ample opportunities to die, but chose to hang on and pull through. I never dreamed this is what motherhood would look like for me, how far I’d go to make sure she gets what she needs, including faking being strong through some of the most humbling, terrifying moments of my life. Accepting my own eccentricities falls into the same mixed bag as accepting her physical setbacks. As far as she’s concerned, none of that matters. Honestly, I think she knows that she not only balances me, she pushes me. She knows my role, senses my fears, and loves me anyway. Plus, she’s comfortably aware that part of my job description is to accept that her desire to connect overrides my desire to run.