I know a lot about denial. I studied it in my undergrad, I learned more as I pursued my Masters, and I experience it all the time in my life as a middle school counselor. But, none of this training prepares you or protects you from the denial you keep in your own life. Yes, I succumb to denial. I’d like to tell you that I don’t, but then I’d be even MORE in denial. But enough about that.
I know I haven’t written a lot about our struggles with my middle child, Robi, epilepsy and medication. I mentioned it when I wrote my first annual letter to her back in September. In a nut shell, Robi had two non-fever related seizures back in May and June of 2009. This led to a diagnosis of epilepsy and to the start of anti-seizure meds. And where everything changed.
I could write a million posts about how much I hate giving my daughter meds. She takes Keppra – it’s not approved for kids under five, yet we’re told it’s given to kids under five all the time. The side effect list is lengthy and includes dizziness, tiredness, and coordination issues. Although they aren’t life-threatening (for which I’m incredibly thankful), I hate knowing that each day when I give her those meds I am changing her – making my perfect little girl turn into the weeble-wobbled accident prone girl who immediately says, “I’m okay,” after nearly every fall. I hate that now we are pursuing SPED testing because she has fine motor skill issues that may impact her next year in kindergarten. I hate that me, the school counselor, will be sitting on THAT side of the table at an SST meeting, an eligibility meeting and annual IEPs. I hate the feeling that I need to tell everyone I meet when they look at her with their judging eyes that this isn’t all that she is – that there’s a perfectly perfect girl there behind the meds and labels. There is so much I hate about this, there is so much I want.
On Valentine’s Day Robi had an EEG that I knew would be abnormal. I hoped for something else, but I knew. Our doctor called and said there was “a lot of abnormal activity” on the EEG and he wants to increase her meds since it hasn’t been changed since she started two years ago. We hesitated, asked for an appointment. The appointment is on Friday. We wanted to have a chance to see if the meds were really needed – the side effects are hard to accept when you don’t really know if that medication is really doing anything. “If she went off the meds and had another seizure, then I’d be fine putting her back on,” my husband said to me. I agreed – I wanted so badly to see what would happen if we could just see un-medicated Robi again.
Well, that’s not going to happen anytime soon. Robi had another seizure yesterday in the morning. We were home. She just woke up. It was as hard to watch as the first two. Ruined the day – she was out of it for about three hours after and threw up for half the day. I called my husband and told him to call the doctor about increasing her meds. “I give up, ” I told him. The meds have obviously been doing something. The doctor doubled her dose and scheduled another EEG before our appointment on Friday. At least we’ll get some feedback to see if the dose increase reduces the abnormal activity.
I can’t hide behind my denial, my sadness, my wishes and hopes and memories of “before” the meds anymore. The wake up call I needed came, and although I see I needed it, I still don’t like it. I want to protest. Cross my arms and stomp my feet. Refuse. But I need to suck it up, face reality and be thankful for all that I do have. And yes, Robina may not be what she could be right now, but she is perfect. She is perfectly perfect just the way that she is, and I will fight whatever fights are needed to make sure that everyone knows that.
So there, take that.