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.