Sunday, March 6, 2011

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!


  1. I have enjoyed reading this. I miss y'all so much and really wish we lived closer. I think about y'all and pray for y'all all the time. Love you.

    Theresa Peck

  2. Good morning sweet ladies!

    Anne, thanks so much for clarifying her treatment and giving us a "glimpse" of the clinic, Hannah's days, and both of your journeys through this 3 1/2 weeks. It always make SJ and I feel like we're there with you when we know what's happening. This blog has been a life-saver for us at home since we don't get a lot of time on the phone with both of you each day.

    It seems like "forever" since we have seen you. I'm sorry that my life has been so crazy with school, church, and home life while you have been away. I know that it has made me a scatter brain. Thank you so much for taking time out of your busy, busy day and proofing my papers and other writings for my two classes. You have been such a big help and support to me, even miles and miles away! I wish that I could be more to you while you are away. I am working on keeping the home going, house cleaned, laundry and Sarah's school going, but am sure that it's not as good as you do it when you're home! :)

    I hope that this week goes well and that you don't have to move out again!!! ;) Until we get you in the middle of next week. I can't wait.

    Have a great day and know that you are both in my thoughts and prayers throughout the day and night.

    Love you,
    Hannah's dad and Annie's lifemate

  3. Hey Anne!

    Another GREAT post, sister! So many people really don't understand the extent of what Hannah has been through and her struggle with pain. This post paints a picture of the urgency to get her to Mayo and the purpose of the program.

    I must brought tears to my eyes to read this. Not just as a personal friend, but as a Mom. I cannot fathom seeing my child suffer...and above see their personality being robbed from sleep deprivation and chronic pain! :( It breaks my heart to know that there are a lot of kids going through this program...and other parents are going through this valley as well. As I pray for you and Hannah this week, please tell the other parents that you have friends from FBCB that are specifically praying for THEM and their child as well.

    Love and miss you both! Angie

  4. I'm with Angie--this just made me cry. What you as a family have been through is just unimaginable. I'm so thankful that you're receiving some tools to cope, but it sounds like those tools are equally tough to get used to and to implement. You are all in my prayers.

  5. May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. - Romans 15:13

  6. Somebody's been practicing their Tetris! You guys have that car so well packed! When you pack up to leave you may have so much extra room that you have to go to the Mall of America to finish filling it up! ;) Tell Tyann and Abby we are praying for them too! Love y'all!