Labor Day

Hope you aren't checking in for that certain "blog thought" I promised.  I didn't take get the opportunity to work on it this weekend.  It would have required me to sit down at my computer and think  . . . and labor.  It was Labor Day weekend after all, which I believe means that we are supposed to take a break from laboring, right?  I'll get it finished eventually, I promise.

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It's amazing how one particular seven year old can turn my entire house into his playroom.  It's insane, actually.  I miss having a basement.  When we lived in St. Louis, we confined the girls and all their thousands of pieces of Barbie paraphernalia to the basement. I have no place to confine Eric and all his crap stuff.  For example, today my family room was invaded by army men.

Eric somehow convinced Mark that he needed these army men because he certainly doesn't have enough toys to play with already. Or maybe, Eric wanted a reminder of his Uncle who is in the Army (Ohio National Guard) and who will be leaving shortly for Iraq for his second year long tour.  Except that Eric really has no clue who his Uncle is because he lives in Ohio and we don't see him too often. So, that's probably not it.

Whatever the reason, Eric managed to entertain himself for several hours with these guys, so I guess it was worth it.  They've all been neatly thrown packed away in their container for the night.  

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I promised Jack a trip out of his room this weekend.  Poor kid rarely gets out of his room, let alone his house (and yes, this fact is accompanied by much guilt).  We went for a walk around sunset, with camera in hand ... of course.

It was a typical, beautiful Arizona sunset.  And, just in case you are wondering, these pictures are of a neighborhood within walking distance from where we live.  We do not live in this neighborhood.  We live on the other side of the tracks street. But, it's nice to pretend on occasion. :)

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And for my friend Dana and anyone else who is wondering - Hilary is doing well.  She doesn't seem to be missing us at all! Her first official day of school was today (what's up with that!) She is beyond thrilled because she is on track to get into the school of film and animation next year (which is highly competitive) and she will spend this year taking classes to prepare her for the program.  I've already made reservations for Mary and I to fly out to see her the first weekend in October because that's her birthday.  I've also  booked her flight home for Thanksgiving.  I should own stock in Southwest Airlines with the amount of money I will be giving them over the next four years!

As always, thanks for checking in.  Have a fabulous rest of the week!

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I already posted this on FB, but I'll share it again here because it made me laugh out loud:

May those who love us, love us; and those who don't love us, may God turn their hearts; and if He doesn't turn their hearts, may He turn their ankles so we'll know them by their limping.
(Irish Blessing)

Weekend Warrior

Just a typical Saturday morning in the Schrooten Jungle!

Chugging Along

I suck. I promised more regular updates and I've not come through.  For those who continue to check in on us, I apologize.  As a blog stalker myself, I know how disappointing it is to check in for updates and see the same old post day after day.

I've been working on a "blog thought" the last few days, but I'm struggling to finish it.  Ironic, since it's about my "struggles".  In an effort to increase my hours of beauty sleep (because God knows I could use it), I'm making a real effort to get to bed before 11pm on week nights, which really cuts into my blogging time.  I promise a post worth reading (well, I suppose you'll have to decide that) by the end of the weekend.

Life continues to uneventfully chug along.  You know, same $#$^, different day.  Not that I'm complaining, because I'm not.

Enjoy your Labor Day weekend and think of Jack if you happen to tune in to the Jerry Lewis telethon.

Thanks for checking in.  I really mean that!

It's 10:45pm .... 15 minutes before I turn into a pumpkin! Gotta go :)

Have a Happy Week

If you want others to be happy, practice compassion. If you want to be happy, practice compassion.

Dalai Lama

Have a HAPPY (and compassionate) WEEK my friends!

More Good News to Share

I received an email yesterday from the person at Johns Hopkins who has been part of the team implementing the "TouchStones of Compassionate Care" Program. His email provided, in part:

This past year we made a habit of handing out the stones and a copy of your "Dear Future Physician" letter to each physician resident that served a rotation in our pediatric intensive care. They were a hit! Folks really seemed to appreciate the thought that went into your letter and in the gift you made available. . . . It was so successful, in fact, we were wondering if there is anyway we could receive another supply of stones to be able to offer to future residents as they come to the pediatric intensive care portion of their training.

How totally cool is that! It just made my day. To know that Jack and I really can made a difference almost makes this journey worth it. (well, that might be pushing it.) So, where do I go from here? I get more stones to Johns Hopkins to start with. And then, I start contacting other Childrens Hospitals around the country and share with them the success of the program at Hopkins. After talking with the PICU doc who agreed to be the first to try the program (who was at Hopkins when the program was started, but who is now at Vanderbilt Children's), we both think that pediatric residencies are the best venue for this project because these physicians have the clinical experience needed to truly understand the impact of the program. I also need to find a way to raise money to support this program - the stones aren't cheap! Somehow, I'll get it done.

This has been a good week!

Sneak Peek

There are some new and exciting things going on with The Willow Tree Foundation. If you recall, I mentioned many months ago that I was working on a new website for the Foundation. That's still in the works, but we are making progress. Someone is doing it pro-bono for me, so I can't be too pushy. Those of you who submitted "Day in the Life" stories, don't worry I haven't forgotten you and I still have your stories tucked away. And those of you who promised stories but haven't turned them in yet, there's still time. I don't know when the new website will be ready to unveil, but hopefully, not in the too distant future.

The other fun news is that several months ago I asked Lisa Leonard if she would design a necklace for The Willow Tree Foundation. She and I worked together to come up with this necklace:

The Foundation will purchase the necklace from Lisa at wholesale and then we'll sell it with all profits going to the Foundation. I'm not sure yet how much I'm going to charge for the necklace because I want to make it as affordable as possible. So, tell me .... what do you think? Would you buy it? It's sterling silver. You can get an idea of the quality of Lisa's work by looking at her pieces on her website. I have several of her necklaces and I love them.

Here is Mary modeling the necklace for you:

The necklace is not yet available for sale - but soon. I've also got another designer working on a different necklace and I hope to have two choices available for sale.

Tell me what you think!

Just Another Saturday

Actually, it's not just another Saturday. My daughter is 2000 miles away, settling into her new life. But, from what I hear ... so far, so good. Hilary's roommate doesn't arrive for another week - she isn't attending the special orientation that Hilary and most of the deaf/hoh kids are attending (although Hilary's roommate is deaf and is a cochlear implant user). Mark told me that it's a good thing they know some sign language because most the staff they've encountered so far are signers. I guess there was a reason he went instead of me - Mark has always been more adept at (and comfortable with) signing than I am.

Hilary's new "home" for the next nine months

high sleeping quarters

"Toto, I don't think we are in Arizona anymore"

(the view from her room)

All moved in

Computer is up and running .... life is good

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As Jack and I were enjoying his morning routine, I decided to pull out my old camera (thus the reason it's so grainy) and take a video of clip to share what a typical Saturday morning is like in our house. The only thing missing is Eric, he's usually buzzing around the room like a gnat. (I'm not sure where he was when this was taken.)

Photo and video editing at www.OneTrueMedia.com

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Sorry for the delay between posts. You can blame it on Facebook. It's quicker, easier and more fun to update! I'll try to be better and make it worth your time to click on over to Jack's blog. Thanks for checking in and have a great day!

The Lift

I've been trying my best to get Jack out of his room and out of the house on the weekends. I usually take him for walks around the neighborhood in the evening. Putting Jack in his wheelchair is no longer something I can (safely) do on my own. Jack is a two person lift and, to be honest, we shouldn't be lifting him at all. Instead, we should be using his lift - the lift our insurance paid good money to have installed over Jack's bed. I've been good and have used the lift two weekends in a row. It really is a pain to use and takes twice as long, but I keep telling myself, if I hurt my back, the pain will be much more real.

I did a photo shoot of the whole process of getting Jack from his chair to his bed.

Here is the ceiling mounted lift. When Jack got his room makeover, they painted the lift blue to match the sky painted on the ceiling. Very cute!



So there you go, everything you wanted to know (or not) about how we use the lift to get Jack in and out of bed.

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I just have to share with you another Eric classic. One of the papers I pulled out of his backpack this weekend was a "Bio Poetry". The kids had to decide who they were going to write about and then fill in the blanks. Eric chose himself and, for the most part, I thought it was cute, but nothing remarkable .... that is until I got to his "Closing Line" (the italics words are Eric's words):

Eric.

Funny. Caring. Nice.

Wishing to have a dog.

Dreams of getting rich.

Wants to walk on the moon.

Who wonders if dad has a suprise waiting for him at the end of class.

Who fears his nightmares.

Who likes his dog.

Who believes in ghosts.

Who loves tarantula.

Who plans some inventions.

and the Closing Line:

When he dies he wants to be creamated.

He clearly took the "Closing Line" literally! (love how he spelled it). I have no idea where he comes up with this stuff. We certainly don't sit around and talk about how we are going to dispose of our bodies when we die. I can only imagine what he teacher thought when she read that.

Here's a picture of my little goof with his giant gummy snake. Ahhh . . . . boys!

May your Monday be fantastic and each day thereafter equally as good.

Happy Friday

“Life's disappointments are harder to take when you don't know any swear words.”

(I couldn't agree more)

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Fun Photos:

My friend Marcie introduced me to Picnik - a great photo-shopping website. I'm having a lot of fun doing some creative things with my pictures. (thanks for the tip, Marcie.)

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Have a fabulous weekend everyone!

Checking In

I was looking through all my pictures on the computer and found this one of me and Jack from a couple of years ago. I like it. We both look happy (or we're putting on a really good front). Jack's smiles aren't quite as bright these days. But . . . his spirit remains as bright as ever!

We finally got Kristi back today. She's been out for over a week and while we've had a good replacement, it's just not the same. I don't like having strangers in my house. Unfortunately, I'm going to have to learn to adjust because nursing changes are on the horizon. The way the agency has things set up now, we will soon have four different nurses in our house every week. Four different ways of doing things. I'm sure it's hard on Jack too --having strangers in his face, touching his body and providing his care. But alas, I should not complain because the alternative -- no nursing care -- is not a viable option either.

So, onward we march doing our best to make this extraordinary life we lead as ordinary as possible.

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Only two weeks into the school year and Eric is already making waves. He's the only kid in the class who somehow lost his writing journal that was sent home last week. He just can't seem to remember ever getting one. He also received his first "storming" report today for goofing off and not following directions. I'm guessing this is going to be another very long school year. Oh well, he certainly keeps life interesting.

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We're getting down to the wire for Hilary's departure. I'll be shipping some of her things this weekend and she and Mark leave next Friday (the 21st). Only one of us can go because of Jack and, Hilary picked her Dad. She said he's more fun. Sadly, I can't disagree. I forgot how to have fun a long time ago (around the time I found out my first child was born deaf). It just bums me out that we can't both go. I'll probably take a trip out in October to visit her, providing she wants to see her "un-fun" mom.

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That's about all I've got from the Schrooten Ranch. Have a great day and thanks for stopping by.

Superb Sunday

Weekends are a bit like rainbows; they look good from a distance but disappear when you get up close to them.

~John Shirley


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I decided it was time for a change of attitude and to get that, I needed a change of scenery. So, I forced myself to get up bright and early this morning and headed out for a hike on one of the many local hiking trails we have here in Phoenix. I used to hike on a regular basis a few years ago, but got away from it the year of Jack's spinal fusion surgery. It's amazing how much more productive your day is when it starts out with scenery like this:

Jack and I finished off the day with a nice long walk through the neighborhood while the rest of the family went out for dinner.

Today was a good day. I feel renewed and ready to tackle whatever this week throws my way with a positive attitude. Wishing you all a super week too.

FFTF

Food for Thought Friday:

Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.

~Buddha


Trying to keep it all in perspective.

Have a grand weekend everyone.

Beat Up

I'm feeling just a little beat up today. It's been a week of new nurses and no nurses and the next two weeks look to be a repeat of the same. I walked in the door from work today to a very stressed out kid. It took me over an hour and the Vest, breathing treatments, and lots of suctioning to get him to where he was comfortable. No nurse today, so Mark was home with Jack and while he is really good with Jack, he's just not as good at troubleshooting as mom is.

That's another thing that never changes ... a medically fragile child will always be a medically fragile child regardless of how stable he appears. These kids can turn on a dime.

My mom still hasn't made it home from the hospital/rehab since her surgery on July 1st. Lots of complications, the latest of which has landed her back in the neuro ICU. Hospitals are really dangerous places to be and we really need to get her out of there and get her home before they kill her.

And to think I actually contemplated giving up drinking during the week. That ain't happening.

Onward.

One Day at a Time

Thank you all for your kind and supportive comments to my last post. Sometimes, this is just really difficult. And I can tell you, it doesn't ever get easy. You learn to accept it, deal with it and even find those moments of happiness despite it, but it never gets easy and it never feels "right". But, you have your pity moments, your sad moments and a whole lot of pissed off moments and then you pick yourself up and you keep on keeping on. After all, if he can face each day with a positive attitude . . .

. . . I can at least try and do the same.

I read something today on another blog and it really hit home for me.

By Joni Eareckson Tada.....

After my first year in a wheelchair, I began to tire of the self-pity. I turned to my friend and I said "I can't face a life of paralysis with a happy attitude. It's just too big."

My friend wisely replied: "God doesn't ask that of you. He only asks you to take one day at a time."

One day at a time. I can do that.

I Wonder

We've successfully made it through the first week of school. Eric likes his teacher and so do we. Mary is a junior this year and, as is typical for junior year - it will be her toughest year academically. The pressure is on junior year to not only get good grades, but also to score well on the SATs. Mary definitely has her work cut out for her this year, but I think she's up for the challenge. Hilary leaves for college in three weeks.

Of course, with the start of a new school year, I can't help but think about Jack and wonder what it would be like if he was going to school like everyone else.

Unbelievably, Jack should be in 5th grade this year!

I wonder if he'd like school.

I wonder what his favorite subject would be.

I wonder if school would come easy to him or would he have to work at it.

I wonder what color he'd want his backpack to be.

I wonder if he'd prefer to wear tennis shoes or sandals to school.

I wonder if he'd still let me pick out his clothes, or would he have a style of his own.

I wonder if he'd want PB&J or a turkey sandwich in his lunchbox.

I wonder what sports he'd be playing or what clubs he'd belong to.

I wonder if he'd come home from school and get his homework done right away or procrastinate like his brother.

I wonder if he'd be interested in girls yet.

I wonder how tall he'd be.

I wonder what his voice would sound like

I wonder what kind of music he would listen to on his iPod.

I wonder what his personality would be like.

I wonder if he would be a serious kid or a goofy kid.

I wonder what his friends would be like.

I wonder if he would be high compliance or a free spirit.

I wonder.



and it hurts.

First Day of Second Grade - Just Pics

Back to School

This pretty much sums up Eric's opinion about going back to school tomorrow!

Wishing you a happier start to your Monday!

I Spy

Eric decided that he wanted to create his own "I Spy" book. He put together his first two pages this evening and asked me to take pictures. He wanted to know if I would be able to get book size prints of his "pages". I guess he's serious about this book. He's calling it "I Spy Around The House". Look for it on Amazon.com soon. (just kidding!)

(and yes, he did in fact hide things in the licorice)

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We are getting into the school mode around here. Eric has "meet the teacher" tomorrow night. Eric says he knows who his teacher is because he had to go to her room a couple times last year when he had to miss lunch recess to finish work didn't get done because he was too busy entertaining his classmates instead of working. At least she already knows Eric and has an idea of what her challenges with him will be.

I think Mary is ready to get back to school because she's bored. I'm so happy she can drive herself to school this year. No more having to get out the door by 7am to get my kids to school -- for the first time in 7 years! It's also the first time in 7 years that Jack's nurses don't have to get to my house by 7am. Everyone is happy about that.

Speaking of nurses, things are changing a bit around here in that regard. Kristi has some things going on with her own family that is requiring her to take a lot of time off. Because we can't do without nursing, the agency has sent out two new nurses who will be picking up shifts. So far, I've been impressed with both nurses. To be honest, I think this change is good for everyone. I need to know that we have back-up nurses who can fill in when Kristi can't make it. Kristi has been our 4, 5 and sometimes 6 days a week nurse for the last seven years and I think she's ready for a break from Jack as well. Time will tell if things will work out or whether I'll be reaching for the Xanax (and the phone to call the nursing agency) soon. Wish us -- really Jack --- luck!

Hilary leaves for college on the 21st of August and the closer it gets the more freaked out I'm getting. She got her roommate assignment this week. Her roommate is from Massachusetts and from what I read on RITs website, they pair deaf/hard of hearing students with other deaf/hoh students -which is a good thing where Hilary is concerned. Hilary is on a co-ed, mainstream floor - Yikes! I guess my "little girl" is going to grow up whether I like it or not. (and I'm really okay with her growing up.) This is going to be such an excellent opportunity and experience for Hilary.

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I thought I'd update a bit on my mom as well because I know there are some of you who read this who know my mom. After talking with some of my friends about my mom following her last surgery, they were surprised to hear that her recovery wasn't quick and uneventful. What I failed to mention is that my mom's biopsy wasn't a simple needle biopsy, they did another full blown craniotomy with the thought being if the cancer was back, the neurosurgeon would place chemotherapy wafers directly into her brain. He didn't have to do that, but he did remove the scar tissue. The fact is, when someone cuts into your brain, more likely than not, you will come out with deficits. My mom had quite a few deficits going in (she suffers from expressive aphasia). Her recovery following this last surgery has been slow, but I think she is close to being back to where she was before this recent surgery. She's been in the neuro-rehab unit of the hospital since July 3rd. She had another surgery on Tuesday to have a shunt placed because they think there is a build-up of fluid in the brain as a result of initial surgery. She was in the hospital a few days and now she's back in neuro-rehab. So, while it's all very good that the cancer isn't back, my mom is far from being "back" to who she was before all this started. It's sad, but we recognize how lucky it is that she is even here with us two years after her diagnosis.

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I'll close with another picture of the brothers taken last night. Eric had been running around the house like a wild man and he was all sweaty. His hair looks goofy because I messed it up with my hands, it's not his hairstyle of choice!

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Every day may not be good, but there's something good in every day.

-author unknown

Dance in the Rain

This link has been going around FB and emails today. It's my "motto" and is definitely an enjoyable (2 minute) watch.

DANCE IN THE RAIN

He's Home ....

safe and sound! We were waiting at the assigned gate for his plane when I heard a page overhead for me to get to a different gate! Mary and I raced across the airport to the new gate and Eric was waiting for us without a worry in the world. I've had to hear how much better St. Louis is than Phoenix and how he wants to move there. He and Mary both! If only I could make a decent living and get nursing coverage there, it might be an option. (which I can't, so it's not an option.)

Eric and Mary have one more week off and school starts on the 27th of July -- I'm so not ready and neither are they!

Eric brought Mary back her favorite pumpkin muffies from St. Louis Bread Company

Happy Friday

Love Jack,

It's been a quiet week without Eric. I already shared this on FB - so, many of you have already heard this. But, I'll share again -- I was talking with Eric on the phone on Wednesday asking him how things were going and what had he and Peggy been doing. His response was: "Mom, I don't have time for the details!"

Needless to say, I haven't "bothered" him since. I sure hope Peggy can get him on the plane to come home on Sunday.

Have a great day and a great weekend.

All By Himself

As insane as it may sound, today I put Eric on a plane bound for St. Louis all by himself. Trust me, it wasn't easy and I went back and forth for several months wondering if it was a good idea. The idea came about after our visit to St. Louis last March. The night before we left to come home, Eric was in tears because he didn't want to leave Peggy's house. He just loves Peggy ... and she him. Peggy and Eric have a special connection (she was, after all in the delivery room with me (and Mark) when he was born). Peggy says Eric is the son she never got (she has three grown sons - who, incidently, are all successful kids) because he has such a passion for learning and information and Peg is one of those people who will go to the zoo and read every plaque and exhibit sign .... and Eric will listen and ask questions - while the rest of us (okay, maybe just me) wants to hurry and move to the next exhibit. The two of them are peas in a pod.

After our visit in March, Peg and I got to talking about having Eric come out in the summer to spend a week with her. It sounded good in theory, but the idea of putting Eric on a plane by himself was a tough one. Mary and Hilary started flying by themselves when they were 6 and 8, but they always flew together. (When we lived in St. Louis, they would always fly home to Arizona in the summer to spend a couple weeks with their cousins). Eric was excited about coming out to Peggy's, but I wasn't sure he really got the fact that he would be going alone. I kept asking him if he would be okay flying by himself and he kept saying yes. So, I bit the bullet and bought the ticket. Even after buying the ticket, I was nervous about him flying alone. I figured that if he was too scared and didn't want to get on the plane that would be fine, I wouldn't force him. Well, today was the day and he did fine. He was a little nervous -- he kept coming up with all these ridiculous scenarios of his possible demise while on the plane.

Such as,

"What if the pilot dies while flying the airplane?"

"Well, there is a co-pilot."

"What if he dies too?"

"It's not likely to happen Eric, don't worry .... there will be a pilot flying your plane the entire time!"

When it was time to board, he really was okay. Off he went without looking back. I did feel much better when I saw another boy flying by himself as well - he was several years older than Eric. They boarded together, so I knew Eric would be fine. In fact, as Eric was rolling his luggage through the walkway to the plane, he was having trouble, and the other boy came back to help Eric and grabbed the handle and both of them rolled the luggage onto the plane together. It was too sweet. (see last picture).

Eric arrived safe and sound in St. Louis and he is very much enjoying having Peggy all to himself. Hopefully, he'll have some time to give me an update here and there throughout the week. I miss him already!

Ready to board

No looking back

His sweet helper

Have a GRAND week everyone.

Simply Be

A few weeks ago, I took the "back way" to work. I work in a small city about 40 miles south of Phoenix and occasionally, when I'm not in a hurry to get to the office or if I feel like I need some extra quiet time in the car just to think, I'll take the back way to work - which takes me through the Gila River Indian Reservation. The road through the Reservation has little traffic and is usually very desolate and peaceful. I don't always take this route because it's a two lane highway and you risk getting behind one of the big construction or quarry trucks traveling through the Reservation, and when you do - you are stuck going nowhere fast. While I like the peacefulness of the drive, I don't like to drive slow!

On this particular day, as I was traveling through the Reservation, I found myself behind one of those big, slow trucks. My view was completely blocked and I couldn't see a thing in front of me. I don't usually try and go around these trucks, as I've seen enough white crosses along the roadside to remind me of the dangers of going around large trucks on a single lane, curvy road. As my solitary and peaceful drive was abruptly interrupted by this large truck forcing me to slow my speed, my eyes wandered to my driver's side mirror - and the view caught my attention (which, of course, compelled me to grab my phone and take a picture). As I looked at the empty road behind me and the awesome mountain range in the distance, I was struck by how much I missed along my drive because I'm focused solely on my destination and the road in front of me and I fail to look at the view around me.

Much like my drive to work that morning, I realize that I spend too much of my life focused on what's next and how to get there. Whether it be getting through the day, the week, the weekend, the school year, the next MRI or the next trip to St. Louis. I'm always forward focused, never stopping to just BE and appreciate where I'm at and where I've been. Before I know it, I'll have reached my final destination and have missed so much along the way ... so much goodness, enjoyment, appreciation and beauty.

I'm really good at talking the talk ("enjoy the moment"), but not so good at walking the walk. The picture in my car mirror was a reminder that it's time. It's time to slow down. It's time to appreciate the past - hardships and all -- for what it's done to shape me into the person I am today. It's time to savor the present - hardships and all - for its gift of the people and opportunities in my life today. It's time to just BE.

So, I challenge myself and I challenge all of you, to slow down, look around, enjoy the view and simply BE.

Just a Day in the Life

Just a typical summer day at the Ranch ... one big happy family, hanging out together doing their own thing.

Jack watching his movie on the portable DVD player because Eric is monopolizing his TV

Mary recovering from getting her wisdom teeth cut out on Monday

LIFE IS GOOD!

Great News!

For those who didn't see my post on Facebook .... the area of concern that showed up on my mom's MRI is scar tissue from radiation and NOT new tumor. Truly remarkable! Thanks for all your prayers, good thoughts and positive vibes. Indeed, it's a Happy Wednesday!