The worst of them hit her in a toy store, sapping her energy and her interest. One minute we were wandering the aisles of Toys-R-Us, dueling with Nerf swords and contemplating the purchase of a very cool dinosaur to add to her collection. The next, she stood in place as if she had no idea how she got there, face flush and eyes blank. We went next door to a pet store, and there was a group there adopting out puppies. There were puppies to play with, but not for her, not this time.
"Can we go home?" she asked quietly.
Later, as we drove to pick up Julie from work, Schuyler and I discussed her seizures. I explained again what was happening, and what we were might do to bring them under control.
"We're going to figure out how to make your brain stop getting mad at you," I told her. "We're going to try our very, very best to make things better, I promise."
She thought this over and nodded. She wasn't sad, exactly. More like... resigned. Without looking at me, she pointed to her throat.
"I want to talk like everyone else," she said.
I'm not sure what it says about me as a parent or a person, but all I could say to her was, "I know, sweetheart. I know. And I'm sorry I can't give that to you."
It says everything about Schuyler that she seemed entirely satisfied with that response.
What a rough day. I'm sorry that Schuyler didn't feel up to puppies, and that she feels like her brain hates her.
ReplyDeleteMy 17 year old daughter has had Complex Partial epilepsy for almost 9 years now, and she gets very frustrated with it, too, though she doesn't have Schuyler's other frustrations to deal with.
Being the parent of someone who is neuro-atypical sometimes feels like a life of apologizing for not being able to kiss it and make it better.:/
I honestly think that's all you can say. Honesty and love. You are wonderful and I'm sorry Schuyler is dealing with these damned seizures.
ReplyDeleteBig, big sigh. I am sorry.
ReplyDeleteAnd your girl's eyes speak so clearly.
It really sucks being dealt a a bad hand by life, but I see more grace and wisdom in how she copes with it than I see from most people twice her age.
ReplyDeleteYou said the right thing. She knows she is loved and listened to, that is the most important. My hugs and sympathies on this storm. My brother some some mild issues, though never seizures, from being premature.
ReplyDeleteKelly nailed it (for me) in her last sentence. :-( I'm sorry Schuyler's seizures seem to be coming more frequently and making their influence felt. I have the utmost faith that you and Julie are doing everything in your power to fight this particular monster; I'm putting my money on you, J, and Schuyler.
ReplyDeleteBrave little soldier.
ReplyDeleteIt still breaks my heart to recall the look on my son's face when told to swallow foul-tasting medicine or to inhale mist from a tube to keep his lungs clear. I kick and scream when things don't go my way, so how could he be so patient, so resigned, so noble in the face of this suffering?
I think you said exactly the right thing. What a lovely, gracious daughter you're raising.
ReplyDeleteI think you told her exactly the right thing. You're raising a lovely, gracious girl.
ReplyDeleteMy heart hurts everytime I read about Schuyler having a bad day. I noticed on FB that you said you weren't going to post about it anymore because it was a downer (your word, not mine), but I hope that you do. Those who care about Schuyler (and we're in abundance) want to know how she's doing and support all of you when times are tough -- and celebrate with you when the monster loses out once again.
ReplyDeleteLive is an adventure and it takes us to a lots of unknown places.... some places we want to go and others we didn't know that exist (for us). I moved to the town of Holland (no kidding) as I got pregnant. Now I have to learn about this new place with my baby girl that has pmg(I had no idea and was not prepared...I felt like I lost my Baby...today I feel I received a special gift)
ReplyDeleteI can't stop but think about what we might face in her future...and I'm afraid. Praying... and enjoying every minute of the day as if it could be the last one because I love her so much. Schuyler is an inspiration to me; she seems so gifted in many ways. You're doing a great job raising her!!!
Please give her a huge hug from all her online buddies----
ReplyDeleteHugs to all of you. All you can do is be honest and loving with her. Poor thing, this just sucks! Thank you for being open enough to share with us. Seriously, I count you guys as heros of mine.
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