St. Paul

Could someone please send some warm weather up here!!! The kids in the program have to stay on a sleep schedule (read: no sleeping in on the weekends) so a group of us met to go to breakfast at McDonalds (bribing is allowed). The RealFeel was -4 degrees! The temperature outside was 17 degrees, but the RealFeel is so much more dramatic and well . . . what it really feels like!

Hello! Northwest Arkansas? Your high today was 71 degrees. You need to share. Now please.

Today Hannah and I drove to St. Paul to spend the day with a friend of mine from high school that I haven't seen in over 20 years.

You know, it's kind of like facebook, but in person.

Melissa and I grew up in the same church. Her dad was the pastor. We spent a lot of time together. I vacationed with her family, she vacationed with mine. Watching her grow up I decided I would NOT marry a pastor. Yeah. I have since learned not to tell God what I will not do. Sadly, not from this experience. Because I like to learn things the hard way. But that's another story for another day.

Anyway, we have not seen each other since the day I got married just over 20 years ago. She has four kids from 5 to 19. Her middle two spent the day with us.

We spent the day at the Science Museum of Minnesota. Amazing. The King Tut Exhibit was at the Science Museum. Since Hannah sufferes from Egyptomania it was a perfect fit. We watched Mummies: Secrets of the Pharaohs in the Omnitheater which was fabulous. It has a rotatable dome that you watch the movie on. Which was great right after I learned how to watch it so that I wouldn't get nauseous and well, you know . . .

I found myself at the museum today. In the back ground is my friend Sally.

Okay, now that I have posted a pic of myself, I should explain. I haven't had a hair cut since November.

Don't judge.

My bangs are grown out and I can't decided if I should cut them or let them go. It is such a tough decision. I go back and forth and back and forth. And all this time I am going back and forth and back and forth, I am looking, well, indecisive. And hair styleless.

We got a bonus today! Nothing says "we love you" like a box of Girl Scout Cookies in your mailbox . . .

And nothing says "I receive your love" like eating a dozen few before bed.

We also got another box today:

I'm trying to decide if this is from someone who loves us. Or someone who doesn't like my clothes. And wants me to buy a new wardrobe. In a bigger size.

I'll ponder it . . . while I nibble.

PRC Day 11

Today I had this remarkable milestone in the parent meeting this morning. I didn't cry. I was so proud of myself! Did I say "proud?" Uh huh. You can see where I am headed, right?
I get this call from one of the case managers today saying that the Program Director wants to see me. I was a little concerned. Had I done something wrong? Was there a problem with Hannah's testing? Not sure, but not overly concerned.

I got a little more nervous as I waited to see her. I finally got called back. Took a seat. And she says "I wanted to talk to you because you seem to cry a lot." You guessed. Water works!!! Ugh!

I have had this problem as long as I can remember. And I remember everything. Unless I am trying to forget. Then I just say that I can't remember so I can try to forget.

We have ended another long week. It is nice and yet, scarey to think that Thursday is Hannah's last day. The program has been a perfect fit for her. She has benefitted tremendously. At the beginning they just asked her to have a good attitude and do everything that they asked her to do. I could not be prouder of how she has handled herself. She was completely comitted from day one.

I don't know if it has helped her pain. Because I can't ask her. Which is part of the program - - that I am secretly happy about. (Guess I'm not very good at keeping secrets.)

I can certainly tell that she is dealing with it a lot better. And I have my kid back. That's really all I ever wanted. (Which is an incredibly selfish statement. Obviously life without chronic pain would be ideal.)

  

The group shifts on almost a daily basis. Kids are coming and going on the rolling admission. When Hannah got here she was the oldest for a while. Most of the others were 13 and 14. And for a long time there was only one boy. Now there are a couple older than Hannah and a couple more the same age. And there are more boys. Hannah has now been here the longest so she is the next to leave. She has met kids from Alabama, North Dakota, Illinois, Massachusetts, Georgia, Maryland, California, Iowa, Minnesota and from right here in Rochester. Sadly, chronic pain in teens knows no boundaries.

Hannah is accumulating quite the collection of friends here. She received three more this week. I'm just glad they don't need a seat belt.

So it is Friday night and we find the PRC kids in the same place as every other night! Watching a movie! It is kind of like they are a bunch of old working adults. They work all week at an 8:00a - 5:00p job that is mentally and physically exhausting and Friday night they just want to sit around and watch movies. Like they did Thursday. And Wednesday. . .

Not that I know any old working adults. Certainly not in my house.

PRC Day 10

Today was so much better than yesterday! Thank you for your prayers! We are now down to the the last week. Five more days!

Look what I got today! Woo hoo!

It doesn't get any better than that. Chocolate and sleeping late! Glorious!

Today was the day this week that the PRC provided lunch for the group. The best thing about the day that they provide lunch is that we don't have to walk the 7.2 miles to the hospital cafeteria where we eat every other day. But that also means that we don't walk by the gift shop. Where they sell homemade caramels. That I never would have tried if the other mothers had not given me one. They are sabotagers.

Hannah has put up all the cards that have been sent to her. You would think I would have thought to turn off the television before taking a picture. But I didn't. I can't tell you how much each one of these cards means to us. It is so nice to have the cabinets covered in love. It really makes us feel less alone. And it is nice to know that so many people care.

I am just hoping that the super glue comes off.

Have you noticed Hannah's new shadow over the last couple of days? She is like a magnet. Which is fine as long as they are under the age of 7. :)

PRC Day 9

When we started this program the other parents in the program said the second week was the hardest. And I thought "well it won't be for me, because I am different." And that was the pride before the fall. (Can someone please tell me why I do that?) Today was the hardest day we have had so far. And we are in week two. I was humbled. (Which happens to me regularly. So I am used to it.)

Hannah and I discovered that we are not graceful criers. Ok, Hannah discovered that she is not a graceful crier. I have known for a long time.

It snowed over night and we woke to a beautiful winter wonderland.

Actually, when I woke, I couldn't see the winter wonderland. Because it was 4:30a. And I woke to the sound of the snow plow.Which I have learned to appreciate. Just not at 4:30a.

Hannah's case manager gave her a book to read. So I thought 4:30a might be a good time to check it out.

There is not a chapter on "How to Sleep Through the Sound of Snow Plows Scraping the Ground Outside Your Window."

(Did I mention it was 4:30a?)

But I did find this:

Praise Jesus!

(Oh, see that, I figured out how to change the font size! Look out blog world!)

Ummm, evidence.

I may or may not have already thrown some wrappers away. (And thank you to the adult choir for these lovely little pieces of heaven here on earth. They are consumed daily. Because I have no self control. And I have no scales.)

Watching a movie with her peeps this evening.



You notice her blanket. She is rarely far from this blanket. We are lucky she doesn't bring it to church with her. The blanket was a gift after her last surgery. You know who you are . . . and ya done good ladies!

PRC Day 8

We have made it over the hump and we are one the down hill now! Hannah has spent a lot of time with the kids who are beginning to leave now. It is getting harder to watch these kids go home. Plus there is the added anxiety of her own departure. That would be the biggest prayer request right now.

The anxiety level for these kids is actually higher when they leave than when they come in. They get uptight about heading home and having to put all they have learned into practice on their own. Completely understandable.

Today we had rounds (where the parent and teen meet with the whole team). Hannah is doing well. They are really happy with her level of commitment and progress. She makes their job easy. Couldn't be prouder.

Hannah got a fruit bouquet today. She LOVES these! I would offer you some, but it is gone. Every. Single. Piece.

In the background you can see almost half of the kitchen here. You can have lots of people using the kitchen at the same time. But I am willing to sacrifice and leave it available for everyone else. Because I'm nice like that.

Snowing! Makes me smile! :)

PRC Day 7

I am happy to report that as of noon tomorrow we are half way through the program! I am excited and scared at the same time. It will be good to get home but it also means that Hannah will be on her own to put into practice, on a daily basis, everything she has learned. Stresses me out just thinking about it. I think I'll choose to be in denial for a little while longer.

They had another boy enter the program today. My understanding is that the program for both adults and teens is about 78% females. One philosophy on this is that boys get angry and girls internalize. Ladies! Perhaps there is a lesson here! Quit internalizing! I'm just sayin.*

It was good to be back at the RMH for our meals. We have a huge kitchen on our floor with four ovens and cooktops, four sinks, our own pantry, lots of our own space in the refrigerator and freezer. So tonight for dinner . . .

It is better than this. . . Right???

Hannah Skyped with Sarah tonight. It was fun. They picked at each other and argued and gee, it felt just like we were home!

You notice where Sarah is? At church. On Monday night. At 7:45p. Is that tattling?

Mostly Hannah got a kick out of making faces. At herself. The temptation to make faces at her sister and see herself at the same was too much for Hannah to overcome.

There are no classes here on overcoming temptation. Please send Bro. Phillip.

The PRC kids watched a little television tonight in one of the living rooms at the RMH.

I think one of them was supposed to be seated in this chair. :)

We have 5 to 8 inches of snow on the way. Hopefully not like the 5 to 8 inches Arkansas got in February that measured at 2 feet. I am looking forward to the snow. A nice fresh snow will cover all this ugly dirty snow we have right now. Ewww. Makes me think of myself - - when I try to put on a fresh covering on the outside to cover all the dirty stuff underneath. Yucko!

Let's end on a happy note. Your prayers are sustaining us. I gauge this by how much I cry. Not crying much at all. Must be a MONUMENTAL amount of prayers offered on our behalf! (Or you could call it a miracle.)

*Disclaimer: I am in no way advocating inappropriate expressions of anger. I personally internalize a lot. Mostly Dove dark chocolate.

Moving Day

There is no place like home! It is so good to be back at the RMH! And we were especially grateful to be able to move in today instead trying to move back in during the week. The RMH is amazing. They are so accomodating and friendly. The employees and the volunteers are simply wonderful. Always smiling and willing to help. Hopefully you will never have a need to stay at one, but if you do you will find that the experience really helps to minimize the stress.

When we got back to the house today we were greeted by lots of volunteers and a cheerful "welcome home!" At that moment I got so emotional I thought I was going to cry. I know what you are thinking, "Anne? Cry? Really?" I know, it is hard to believe. Hannah and I didn't have to lift a finger. They had loads of extra volunteers on hand that came out to our vehicle and toted all of our luggage to our room. Home.

Eh? Pretty good, huh? :)

After moving back in and going to church we had a low key day. Hannah worked on her frames for the kids who are leaving this week.

Then hung out with some of the kids in the house.

All of the kids sign a t-shirt for the other kids and Hannah had some catching up to do tonight.

And she got caught up on her daily scripture verses after being gone.

How We Got Here and What We are Doing Here

Sounds boring, huh? Yeah, it probably is.

Last summer after Children's Camp Hannah lost the feeling in her left leg. We took her back to her doctors in Dallas. Her neurologist ran a bunch of tests and found nothing. He advised us to take her to Mayo to get a fresh set of eyes on her case and see if they could help her. After we made the appointment for Mayo Hannah started having extreme back pain.

Anyone who has had one day of pain knows what it is like. And if you are a parent, you know about sleep deprivation. Hannah wasn't sleeping. She was pale. She couldn't function during the day because she couldn't sleep at night. Hannah has a great personality. She is a lot like her dad. She is very funny and when she senses the mood in our home going down she can single-handedly turn it around. She truly is pure joy to have at home. But the pain had robbed us of her. It was aweful. By this point, the lack of feeling in her left leg was a secondary concern. I just wanted my kid back.

Her appointment was scheduled for January. After a few weeks of her not sleeping we knew that we could not wait until January. Through what can only be described as a series of God orchestrated events were we able to get Hannah in before Thanksgiving.

After seeing many doctors and having many tests done the doctors were "perplexed" on both issues - the no feeling in her leg and the back pain. Because of the level of her pain and because they don't know what is causing it, they recommended she come to the Pain Rehabilitation Center.

The Pain Rehabilitation Center For Teens is an intensive 3 week program to teach the teens how to deal with chronic pain and live a life as normally as possible. The program has 2 days of evaluations where they test everything it seems, then 15 days of the program. It is physically and emtionally exhausting - every single day.

The program is 8:00a to 5:00p every day. The program teaches the kids about lots of things that affect their pain and ways to cope with it. They discuss issues relevent to people with chronic pain like depression, suicide and prescription drugs (none allowed - ever). Which quite frankly, I have been deeply concerned about all of these.

They talk about the physics and chemistry of the body. They learn about the mind and body connection. They learn ways to cope with the pain. They learn how to deal with difficult days. They deal with the psychology of chronic pain and how it affects them physically.

The don't feel sorry for these kids. They don't get off the hook for anything. The rule when they leave here is that there are five reasons to miss anything:

1. Temp > 102.8
2. Protruding bone
3. Unconscious
4. Bleeding profusely
5. Suicidal

It's tough. So those times when Hannah missed leadership or the evening service because of pain, those days are gone. They give them the tools that they need to learn to moderate, to use relaxation techniques, to stay on a schedule (no more sleeping in on Saturdays), to set goals, to use distraction - - I'm sure there is more. There is no more talking about pain. We can't ask her about and she can't talk about it. She also can not show any pain behaviors (like when you rub your head because you have a headache - no more). There is no avoidance for pain and no getting out of anything at home - - like chores.

Concentration is huge for people with chronic pain. Hannah can read the same paragraph three times and not know what it said. She is learning how to be able to do this.

They deal with the fears these kids face. Which are significant not the least of which is "am I going to feel like this my whole life" - - I'm sure you can imagine.

Hannah hears from various doctors from Mayo on a daily basis for lectures on all of these things. The parents meet 6 hours each week to discuss all of these issues and our roles. In addition to that we meet with the kids for 5 hours a week for a lecture on one of these topics. Hannah and I meet together with the team that runs the program twice a week. They evaluate how she is doing and what she needs to work on. So far she has only received glowing comments. She is all in and they know it.

In our parent meeting last week they did mention that this program could technically be done on a one-on-one basis but it wouldn't be nearly as effective. These kids need the other kids. And honestly, the parents need the other parents.

I know it sounds tough. And it is. But I saw changes in Hannah the first day. AND I have seen a lot more of her personality. I can not tell you how happy that makes me. I have missed her.

This is an outstanding program. It is a perfect fit for Hannah. This programming is working for Hannah. When she started the program all they asked of her was to listen and to do everything they ask her to do - no matter how crazy it might sound. And she has. And it is paying off.

Remember we are dealing with chronic pain. She may or may not have this pain the rest of her life. It is in God's hands. This pain in her back may be the thorn in her flesh and God may not choose to take it away. Like Paul. The goal is for God to receive the glory even in this circumstance. Did I mention that the only reason we found this program is because Hannah lost the feeling in her left leg? A lot of verses come to mind here, but the bottom line is God loves Hannah and He has blessed her immeasureably!

The pictures you see of Hannah are typically at lunch and in the one hour I am with her each day. Oh, and in the evenings. You haven't seen the other 7 hours - - mainly because I haven't either. But trust me, she is working hard. She doesn't spend all day posing for pics even if it looks that way. You are catching a snapshot. And you know Hannah is going to pose with a big old huge smile on her face - - no matter how she feels!