Tuesday, June 30, 2009
Sunday, June 28, 2009
Notwithstanding the fact that the temps reached 110 degrees today, I decided Jack needed to get out of the house, so we went for a walk. (don't worry, it wasn't quite 110 when we went for our walk.) Eric decided to go along with us.
Thursday, June 25, 2009
Monday, June 22, 2009
Eric and I were in the car together driving to my sister's house yesterday. He proclaims from the backseat ... "Mom, I've learned something from everyone in our family". "What's that?" I ask.
"I've learned how to be funny from Dad".
"I've learned how to be weird from Hilary"
"I've learned bad words from you".
Nothing like a kid to give you a reality check. Guess I won't be nominated for Parent of the Year anytime soon.
We never got to what he's learned from Mary or Jack because I spent the rest of the drive trying to convince him that surely, there were other things ... good things ... he's learned from me. He couldn't come up with anything.
Sunday, June 21, 2009
Friday, June 19, 2009
As I was gathering up my stuff and heading out the door for work this morning, I took a look around the house in all its disarray and the one thing that caught my attention was that in every.single.room there were
Those shoes represent everything I've ever wanted in life . . .
A house full of children and a family to call my own.
Those shoes represent life, love, laughter, purpose, dreams, ambition, family and future. The little and big people who fill those shoes are the motivation and inspiration behind everything I do and every decision I make.
All I ever wanted was to be a mom and, as exhausting and overwhelming as it can be at times, I feel incredibly lucky to have a house full of kids and . . .
I'm in no hurry for the day when the house is empty and the only shoes I have to trip over are my own.
(well, maybe just a little bit ... occasionally ... sometimes ... the thought of some peace and quiet is appealing.)
After pondering the meaning of the shoes, I did what any photojournalist would do . . . I dropped my bag, grabbed my camera and took some pictures.
Then I went to work!
Thursday, June 18, 2009
Jack got a much needed haircut this week and he's looking rather dashing, if I do say so myself. I think this weekend is the perfect time for a Jack photoshoot. Check back later for pictures.
Have a grand weekend my friends and, as always, thank you for caring.
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.
It’s ever so short.
Tuesday, June 09, 2009
I like this, so I thought I'd share it.
From Changed by a Child.
Is having a child with a disability a curse or a blessing? A cross or an anchor? A barrier to what I really want to do, or a lightening rod for my priorities. At different times it is probably each of these things, but our attitude can tip the balance, one way or the other, so that most of the time it is an anchor and a blessing -- or a curse and a cross -- depending on how we have chosen to approach it.
So many people search endlessly for "meaning" in their lives, often resisting the meaning that is right there. The point is not that we are lucky to have a child with a disability because it gives our lives instant meaning. The point is that to be presented with this event, and to fail to engage it as an opportunity -- for focus, for meaning, for learning and growth, for a way to affect the world we live in -- is to miss the experience that life has offered us. However, as Arnold Beisser points out in Flying Without Wings, "In order to see the opportunities, though, you must accept what happened as if you have chosen it." (Emphasis added.)
Let me be thankful for this doorway to meaning. Let me have the courage to walk through it. Let me choose it now.
I'm a long ways from accepting this life as one I would have chosen. However, Jack has definitely given my life meaning. I continue to grow, learn and hopefully affect the world around me in a positive way because of him. Despite my claim that I'm feeling less "Jack driven", there is no question that Jack drives my bus . . . even when he's not on it.
Sunday, June 07, 2009
My parents were married here (as were Mark and I)
(it was gone before I even got a piece!)
It was a terrific celebration. It was great to see so many friends and for all of us to be together for a few days. It's been a whirlwind three weeks with all that's been going on. I'm looking forward to having nothing to do next weekend!
Have a great week.
Saturday, June 06, 2009
Mary took this picture of Eric as part of her photography class final. She did some tweeking of the color with Adobe Photoshop. I really like it ... he looks so sweet. I heard from a mom of another kid in Eric's class that she thinks Eric is the "sweetest kid". Hmmm, she must be talking about someone other than the kid that lives at my house!
Today is the big party for my parents' 50th wedding anniversary. As a gift for my parents, I had all the 8mm video my grandfather had taken of us from 1961 through 1977 converted to DVD. We (just us kids and our kids) watched it last night. It was a hoot!
I'm the official photographer for the event, so I hope to have some pictures to share. Until then, wishing you all a fabulous weekend!
Tuesday, June 02, 2009
Received word today that Hilary was accepted into Rochester Institute of Technology in Rochester, NY. Yea! Not sure how an Arizona girl will handle the brutal winters of Northern NY, but it is the perfect place for her in so many ways. I'm excited for the new adventures and opportunities that are headed her way.
Just to clarify my last post (your silence makes me nervous) -- I'm not tired of my sweet Jack, just tired of the lousy hand he drew. Then again, it beats the alternative. Let there be no doubt - he is my everything.
Off to update Facebook. :-)
It seems that lately this blog has been all about the "and Then Some" and not a whole lot about "Jack's Journey". I just don’t know what to write about when it comes to Jack. Every day is the same. I feel such guilt about it, but really don’t know what I should be doing. Gone are the days when I was the insanely intense, have to have a plan and a purpose, and the push, push, push Jack task master. All for what? Nothing changed, nothing got better and no progress was made. Nope, we’ve done nothing but go backwards over the last ten years. Mark and I have both noticed a bit of a decline in Jack lately. The light’s not quite as bright as it was.
I find myself being less Jack driven and more focused on my other kids and life outside the whole special needs arena. I don’t know if I’m looking for more balance in my life or if it’s more of a defense mechanism. I just don’t know. I do know that I’m tired. I’m tired of medical equipment, supplies, case managers, support coordinators, therapists, nurses, Apria, EOBs, and everyone else calling the shots. Over time you learn to pick your battles, but lately, I feel like surrendering completely. Yet, I can’t surrender. I have to stay in the game with Jack for as many innings as he has left.
As for “Jack’s Journey” …
Jack is staying the course. He is happy, he is healthy and he is so easy to please.
As for “and Then Some” . . . who else, but Eric.
Eric’s had a problem with getting off whatever video game he’s playing when we tell him “time’s up”. He’s got every excuse in the book as to why he can’t stop “right now”. Tired of listening to his oration when I tell him it’s time to stop, I decided it’s time to put something in writing that we can hold him to. Ergo the following contract was drafted by parents and signed by Eric:
You know what? It worked. When told that his contracted time was up, he stopped, turned off the game and didn’t give us any of his usual grief. I’ve no doubt that next time, he’ll have his own lawyer with him and we’ll find ourselves negotiating terms!
And finally, I’ll close (because it’s 2 am) with another Eric classic:
The other night Mark made lasagna for the dinner (ie: he heated up frozen lasagna). Being the picky eater that he is, when Mark set the plate of lasagna down in front of Eric, he responded with “I’d like to have a word with the chef please.”
I don't have any pictures of Hilary from graduation day because it was very chaotic when we arrived and when we left (she had a graduating class of 750+) and before she even got out of the graduation venue, she had her cap and gown off. Here are a few (lousy) pictures from inside Wells Fargo Arena at Arizona State University where her graduation was held (we were in the nose bleed section):