From My Home to Yours

Words to live by.

Sunday Walk

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.

Sweaty kid

Destination .... McDonalds!

(hence the reason Eric came with us)

Along our walk, Eric picked up a handful of seed pods that had fallen from the trees in our neighborhood. He made the comment that "this is probably a prehistoric seed pod from 1985".

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We've got a lot going on this week. At least it seems like a lot to me. I realize that my "a lot" might not seem like any more than most people who have kids deal with on a regular basis. My biggest stress is balancing my a lot with my job. Work doesn't ever seem to slow down (which is all good in this economy) and because of the nature of my work, for every hour I miss doing my a lot, I have to make it up somewhere along the way. There is no time to catch my breath!

My week consists of:

Monday: Mary gets all four wisdom teeth pulled (at 6:15 am). Mary is a bit of a wimp, so it looks to be a long day tomorrow and probably a long week (thank God for Kristi -- she will help "nurse" Mary).

Tuesday: Meeting with Jack's DDD support coordinator and vent dependent program coordinator.

Wednesday: Doctor's appointment for Hilary to get the health form filled out for college and my mom has a biopsy of the "area of concern" in her brain - with an overnight hospital stay.

Thursday: Nothing (that I'm aware of)

Friday: July 4th Holiday, but I'll be going into the office to make up the hours I missed this week!

That's my week in a nutshell. Hope you all have a great week with NOT a lot to do :)

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This is my first post with my new Mac. So far, so good on figuring out the Mac. My biggest issue is wading through all the files they transferred from my old PC hard drive to the Mac.

Daily Essentials

my daily essentials

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I promise a more substantive post soon. My laptop died and the computer I'm using now is a 7 year old Dell desktop. It's ssslllooowww (and very painful to use for an impatient person). I bought a Mac and will be picking it up on Saturday. I've never used a Mac before and I'm a little worried about how easy (or not) it will be for me to navigate. I've got to reinstall a lot of my programs and they weren't able to transfer my emails or address book to the Mac. Bummer. (I'll eventually recover them using this dinosaur of a PC.)

Happy Friday!

Out of the Mouth of Babes .... er Eric

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"

and

"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.

Dang.

Just Jack

These wouldn't be my favorite pictures of Jack, but I promised pictures .... so here they are! Jack wasn't offering up too many smiles today.

Shoes

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

SHOES

My first instinct was to get irritated that people in this house can't pick up their shoes and put them in their rooms. But then I stopped and thought about something (I really did stop and think) and I thought about what all those shoes represent.

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 . . .

Shoes.

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!

Jack

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.

xoxo

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.

Meaning

I like this, so I thought I'd share it.

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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.

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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.

Celebrating 50 Years

Pictures from my parents' 50th anniversary celebration.

St. Mary's Basilica, Phoenix, AZ.
My parents were married here (as were Mark and I)

Just a cool shot I saw when walking through the church grounds

Renewing their wedding vows

Me and Fr. Alonso. He was one of my teachers in high school. He also married me and Mark. He and my dad have know each other since they were kids.

The kids entertaining themselves during the party.

Cutting the cake
(it was gone before I even got a piece!)

My family

With my friend Marcy - we've been friends since Kindergarten!

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.

Just a Picture

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!

Happy News

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. :-)

. . . and Then Some

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.”

Gotta love him!

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):

If you look closely, you'll see Hilary receiving her diploma in this picture.

She Did It

At approximately noon today, Hilary will have officially completed high school. Not unexpected, and certainly not a big deal for the average kid. However, Hilary isn't your average kid. Hilary was born deaf. Unaided, she hears nothing. Hilary has been attending school since she was 3 years old and her academic "career" has taken her to Phoenix Day School for the Deaf, Central Institute for the Deaf, Moog Center for Deaf Education, St. Joseph's Institute for the Deaf, Our Lady of Mount Carmel Catholic School and finally, our public high school down the street.

Hilary introduced me to the world of special needs, special ed, speech therapy, occupational therapy, early intervention, IEPs, sign language, total communication, oral communication, hearing aids, and cochlear implants, to name a few. More importantly, through Hilary I learned that, as a parent, I would make whatever sacrifices were necessary and do whatever it took to give her the best I could. The best chance at hearing, the best chance at communication and the best chance at learning to successfully function in a world where the majority of people hear and talk. Fifteen years ago, I never would have imagined that in giving Hilary the best I could, she would lead us to a City where we would need to be for Jack. Life has a funny way of working out like it should.

Without a doubt, Hilary's happiest years were in St. Louis where she spent 6 1/2 years attending school with her deaf peers. Our move back home to Arizona was necessitated by many factors, but I will always carry a little guilt for taking Hilary away from the place she was happiest. Yet, Hilary never complained. She just went along with it, did her best and got through junior high and high school completely on her own, without any intervention or support services. (not because she wasn't entitled to services, but because she didn't need them.) I'm extremely proud of what Hilary has accomplished and, while I wouldn't be honest if I didn't admit that there have been many times that Hilary has frustrated me beyond belief, she really has done remarkably well given the challenges she has faced. At the end of the day, Hilary likes who Hilary is and that's all that really matters. That is success. Granted, she still needs to find a way to support herself and move out of my house someday!

Hilary has many extraordinary talents. She is an amazing story teller (writer), artist and animator. Hilary has dreams of being a cartoonist and/or animator. Just recently (and rather late in the process, I might add), Hilary applied to Rochester Institute of Technology in Rochester, NY. RIT has both a large deaf population and degrees in film and animation and illustration. It's the perfect place for Hilary. Hopefully, she'll be accepted this year. If not, Hilary will begin her journey down the road of Plan B (and C, and D, and . . . ) I'm confident that however things work out .... they'll work out.

Well, enough rambling and without further ado ... here is a montage chronicling the last 18 years of Hilary's life. Ironically, I chose the songs because of what they say, yet Hilary won't be able to understand the words when she listens to/watches the video. (I'll give her the written words to the songs so she knows what they say, but it's not the same. Then again, it's all she knows).

I hope you enjoy it.

Photo and video editing at www.OneTrueMedia.com

He Sleeps

Is there anything more precious than a sleeping child?

He sleeps!

I have a lot on my mind these days. Lots to share, but no time to put my thoughts into words. I really hope to do more "thoughtful" writing after I get past the next two weeks. Hilary's high school graduation is Saturday. I put together a video (shocking, I know) to give to her. Hilary always gets very emotional when she watches videos of herself from the past. Times were happier . . . in the past. Her high school years have been tough. But, after she finishes finals on Friday, she will have officially made it through.

I will share the video with you on Friday.

Home

I'm home and happy to be here! I missed Jack, but I sure enjoyed those five days of no suctioning. You don't realize how much of your time it consumes until you leave it for a few days and then come back to it. Everyone managed to survive in my absence (with some advanced planning on my part), which is always a good thing.

New Jersey was a lot of fun. We stayed in a house on the Jersey shore and did a lot of eating, drinking, walking and talking. I think it's fair to say I feel somewhat rested. I did find it very weird that in NJ you have to pay to go on the beaches during the summer season. Being an Arizona girl, I've spent many a summer on the free beaches in California, so I find the concept a bit odd. But, my NJ friends tell me they have cleaner beaches than California. (not sure I agree, but ... whatever!)

When I got home, awaiting me was Volume I of my blog that I "slurped" into a book using Blurb.com. I started this project at least a year ago and I just now finished the first volume that covers July 2006-December 2007. Getting the blog entries transferred was easy (and automatic), but I wanted to include all the comments - so, I had to cut and paste them all into the book. I think it looks great and I did it primarily as a back-up to my blog in the event I should ever lose it. Volume I is 400 pages! I now need to get Volume II (2008) done. For those of you who blog, I highly recommend saving it in book format using Blurb.com. I'm really happy with the way it turned out. Here's the book cover (you design it yourself):



Wishing you all a very relaxing Memorial Day and thank you to all those who serve in the armed forces and who have given their lives for the safety of our country!

Beach

This is all you'll see of me on the beach :-)

Graduation Day

Here are some pictures from Graduation Day at Rutgers. It was a beautiful day!

Pre-graduation
(Bridget, Mary and Kelsey)

Waiting for the graduates to arrive

The Graduate

The plan for the rest of the week is to sleep in, read, walk along the beach and just try and enjoy having nothing to do - not an easy thing for me to do.

Thanks for checking in!

The Edge

This, my friends, is what will push a mother on the edge ... OVER!



Mary has a girlfriend spending the night tonight because they have to be at school extra early tomorrow for an AP test. For fear Mary's room would cause her friend to run from the house screaming, I snuck into Mary's room while she and her friend are watching Grey's Anatomy, hoping to at least clear a path to Mary's bed. The above picture is the number of empty, half-empty, barely empty and full water bottles I found scattered throughout Mary's room. This kind of stuff just drives me insane! (albeit a short trip.)

Mary really pushes the envelope when it comes to me trying to "keep the little things little".

*Sigh*

In other news, there's lots going on the next few weeks. Mary and I are headed to New Jersey next week for my niece's graduation from Rutgers. My sister rented a beach house on the Jersey shore, so we'll be hanging out there for a few days. A lot of scheduling was involved in getting additional nursing hours arranged and in making sure that Hilary and Eric have a way to and from school. (without me at home, Mark's ability to leave the house is severely restricted). Thankfully, we have wonderful nurses who are working extra and odd shifts to make sure Jack is taken care of. If all the planets and stars align just right and God has mercy on me ... everything will work out and everyone will be taken care of in my absence. I worry so much about Jack when I'm away from him. But, I have to get away on occasion or I'd lose what little of my mind I have left.

The following weekend is Hilary's high school graduation - which is why she's not coming to NJ with us. She can't afford to miss finals and they won't let her take them early.

The weekend after Hilary's graduation is my parent's 50th wedding anniversary celebration. I'm putting together a video for the event and while I promised myself I would not stay up into the wee hours of the morning working on it, my first night working on it ... I was up past midnight. The pictures I'm using are all old and have to be scanned in and cleaned up as best as possible with Photoshop. It's remarkable that I'm even working on the video at all considering my mother was diagnosed with incurable brain cancer two years ago and was not even supposed to be alive today. It will be a very emotional event, I'm sure. I'm really looking forward to having all my sibs in town. The last time we were all together was two years ago last Christmas. Fun times!

Other than that, there's not much going on here at the Schrooten Ranch. :-)

Cheers!

I Love This Kid Too!

Oh, and I love my other two kids too. I just didn't happen to get a picture with them this weekend.

Have a grand week everyone!