Emotions

When it comes to emotions, the following are not a good combination:

*Sending deaf child to college 2000 miles away

*Finding out your mom’s brain tumor has likely returned

*Perimenopause

Let me explain:

Deaf Child to College

If one more person tells me Hilary will be “just fine” when she’s attending college two thousand miles away from home, I’m going to smack ‘um! Yes, Hilary will be fine. However, sometimes I think people underestimate what it means to be deaf. Being deaf is an invisible disability because deaf people look “normal”. However, the impact of being deaf is profound. For just one day, pay attention to all the sounds you hear throughout your day and what the meanings of those sounds are. It’s more than just the particular conversation you are engaged in or the television show you are watching; it’s everything about the world around you. Even with a cochlear implant, Hilary can’t begin to comprehend the majority of the sounds in her environment. It also doesn’t help that the majority of the time, Hilary has her cochlear implant turned off. She prefers silence. Add to the fact that she can’t hear, is the impact her deafness has on her speech. Hilary’s speech can be unintelligible at times and it’s difficult for people who aren’t used to her speech, to understand what she is saying. I’m not so much worried about how Hilary will do while she’s at school, on a campus designed to accommodate deaf and hard of hearing individuals. I’m staying awake at night worrying about how in the heck she is going to navigate the airport when she comes home during her school breaks - especially when there will be the inevitable weather delays. I envision her stuck in the airport in Buffalo with no clue as to how to get home. Okay, so I’m probably underestimating her ability to problem solve. But sending your child off to college is turning out to be a lot more overwhelming that I ever imagined. I’m exhausted and she hasn’t even left yet!

Mom’s brain tumor

Those of you who’ve been following the blog awhile know that my mom was diagnosed with a GBM (glioblastoma multiforme) two years ago. GBM is the most aggressive brain tumor and it’s considered “incurable”. We were told my mom had, at best, 6-9 months to live. My mom underwent the standard treatment for GBM – tumor resection, radiation and chemo. For the last two years, my mom’s every two month MRIs have been “clean” – no tumor recurrence. Unfortunately, her most recent MRI is showing some areas of concern. Her case was supposed to be presented to the tumor board today for a recommendation on the next course of treatment. I went to my mom’s appointment last week because we suspected the news would be different than it had been in the past and I wanted to make sure to get all the information. My mom’s oncologist is a first class ass. He treats my mom like she’s stupid and has no respect for the person she was before a huge chunk of her brain was removed when the tumor was resected. He accuses my mom of “not trying” when he does his cognitive test because she doesn’t know the answers to his questions – as if she’s choosing not to know what day it is. If she could do it, she would. I’d love to give the guy a piece of my mind, but I just sit there and keep my mouth shut (mostly because my parents don’t seem to have an issue with the guy). When I told him I wanted him to call me after the tumor board met, his comment was “I wouldn’t let my kids pick out my tie, let alone decide what’s going to happen with my brain”. WTF! I told him that I had a lot of experience dealing with medical information and that I was the best person to relay the information to everyone. He just smiled. In any event, I didn’t get a call today. If I don’t get one by tomorrow afternoon, I’ll be picking up the phone. We’re not sure what lies ahead, but statistically, things aren’t in my mom’s favor. Then again, she’s already defied the odds the last two years, so there’s nothing to say she won't continue to do so.

“P”

It’s no secret that I’m no spring chicken. (who made up that stupid analogy anyway - what’s the difference between a “spring” chicken and any other chicken?) Based on my lack of concentration, forgetfulness and complete inability to multi-task like I used to, I’ve either got a brain tumor myself, or … more likely, I’m suffering from that mid-life ailment called perimenopause. It totally sucks. I don’t even recognize myself anymore. I used to be the person who had it all together. Not so much anymore. I actually broke down and bought a book on the subject last weekend. I’m not that far into the book yet, but I was immediately struck by this point the author makes in the first part of the book:


“Loss is a recurrent theme at midlife. The death of a parent or spouse, estrangement from a child, being let go from a job, changes in physical appearance, or the realization that the reproductive years are over. But no matter what the circumstances, nearly every woman has to give up some dream about what she thought her life would be like.”

If true, I wonder how this plays out for moms of children with disabilities. I’m guessing that the “loss” part of midlife doesn’t hit us as hard. After all, we’ve already spent many years leading up to our midlife grieving the loss of the life we dreamed of. I’m fairly certain I can check “loss over the life I wanted” off the list of hurdles I have to jump through to get to the other side of midlife.

Of all the emotions I’m going through lately, none of them have to do with Jack. Ironic. Life is just so complicated and if nothing else, I can finally acknowledge that: (1) I’m so not in control; and (2) I’m never going to figure it out.

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Life

Enjoy it. Appreciate it. Laugh. Smile. Cry. Hug. Give thanks for another day.

It’s ever so short.