Monday, June 15, 2009


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


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.


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.



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

It’s ever so short.


Anonymous said...

Spring chickens have tender meat, so if you were of the butchering species you are now entering the stewing hen stage.

worthy said...

I'm so sorry you have so many worries right now. I cannot imagine what it must be like to send a deaf child to college so far away, and have no sage advice on the subject. I am so sorry that your mum's tumour seems to be causing new problems, and as to the middle of life issues - well I can join you on that one!

No pearls of wisdom, just sending lots of love and hugs across the pond.

and that doctor?? just unleash your perimenopausal self on him!!!

Alicia said...

I'm sorry to hear of your worries and concerns right now. I am praying for Hilary, your mom and you.

I would have slapped the smugness right outta that doc. You are a better woman than me!! :)

Hugs and prayers to you.

Marcie said...

For what it's worth, you always seem to have it all together!! I'm so sorry to hear about your mom. I'll keep you and your family in my prayers.

ssouth said...

I read this post this morning and have been thinking of you all day. No real pearls here, but my thoughts are:
1. Trust that Hilary will do what you've taught her to do all these years. Adapt and excel. Maybe she can find a travel partner to start? Someone from school heading back west? But it's gotta be rough. I can't send Ben a few blocks away to the neighborhood elementary school without a little panic setting in. I can't even begin to fathom college.
2. I'm so sorry about your mother. That doc must not have a very good relationship with his own kids. Wonder what he has against involved family members? Though, she has come so far. What a gift these extra near thousand days have been. I pray she has many many more good ones to come.
3. Where is that hard liquor delivery service when you need it? Looking back, you should be proud of the life you've led so far. No regrets. You are swimming in lemonade.
Hang tough. Surround yourself with the support and love offered. And have a stiff drink. You deserve it.

Melisande said...

Big hugs, Ann. You gotta ride the wave and just know you have TONS of friends right there with you!

Anonymous said...


I think all parents lose sleep over their children going to college. Add in a disability and I think it would compound the fear. I would be very worried, too. I wish I had a some insight to ease that worry.

I'm so sorry your mom's tumor may be back and the dr is such a jerk. I have no patience for that kind of arrogance.

BTW, like Marci said, you look like you have it all together. You are certainly right that a lot of things are out of our "circle of influence". Not much we can do about those things except say some prayers.

Thinking about you,


Gretch said...


Susan said...

"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 think that is true. Or at least I feel, like you, that I've already done that grieving. So hopefully it WILL be easier for you. I'd blame the lack of "togetherness" the other stuff.

Parenting is all about preparing our children for their emergence into the world. Wishing you much courage facing the moment of truth. She is well prepared.

I applaud your self control with that doctor. He sounds horrible but it's your mom's choice so what can you do? Best to remain civil so he doesn't cut you out of the picture. I hope at least he's good.

So many emotional things going on it's a wonder you can function at all. Hugs.

Ann said...

Thank you all for your wonderfully supportive comments and emails. It's nice to know so many people care. My mom is to be scheduled for a biopsy of the new area of concern - don't have the date yet. Have a great day everyone.


Sarah said...

Oh Ann,

I'm so sorry that worries are high right now. I think Hilary is very well prepared for her journey out into the world. I am sure there will be the inevitable poor choices that maybe could have been better, but those are things she'll have to learn for herself. You can feel reassured each time she calls you, seeking advice and support. She values you and your opinion, though it may be difficult to see now.

I will keep your mom in my prayers. I hope her biopsy comes back as nothing to worry about. Until then....celebrate today, and remember the amazing times you've had to talk and visit her these last two years. I'm sure with the prognosis she had two years ago, that you've made the most of those moments.

And the change.....a sweater, portable fan, a few chocolates, and a couple mini bottles of wine in your purse should do the trick. Hugs!!!

Jen in Texas said...

Sending happy thoughts your way!!!

How can a person get away with being such an ass? If anyone else had such an attitude with a customer or client they would be long gone. Why is a doctor any different? I'm sorry you were treated in such a way! The man shouldn't be able to practice medicine ... or pick out his own tie!

Regarding Hilary and traveling ... when you purchase her tickets have all updates sent to her phone as a text message! I do this myself and when I turn my phone on as we land I have a message of where my next gate is. It also texts you with delays, updates, etc. The funny thing is ... you know more than the people at the counter. I was sitting at a gate and got a text saying there was a gate change and got up and switched gates and a few people didn't trust me on it so they waited, and 20 minutes later came hurrying to the new gate ;)

I know it doesn't solve all of your worries, but it is one extra way to accommodate her. Just don't forget to send her CI ID card with her and remind her not to get hand wanded either!

Hope this next week is drama free! All doctors you make contact with better be nice or you'll have a lot of people ready to attack!