Wow, what a year!

It is December 31, 2008 and I can’t help but think “Wow, what a year!” Yes, I thought that I would be at a different point than I am, but in the same breath I know that God has me exactly where he wants me. His faithfulness to me and my family astounds me. The reason I can say that is that I have been reflecting on this past year. There are so many examples of answers to prayer, of people calling or writing just when I needed it, or of books or verses that I read just when I needed them. Amazing!! Tonight I feel compelled to start a new tradition. Tonight we will be remembering all the ways that God was faithful to us and reflecting on some of the miracles and answers to prayer that we saw this year.

Mimi Wilson wrote “when we have a record of how he has taken care of us, it builds our faith and strengthens our ability to rest in his capacity to take care of our circumstances”. I have no idea what the next year will hold, but I am confident that because he has so faithfully taken care of us this year, he will continue. Will it be easy? No, probably not, but I know he is faithful.
Mimi continued to say that “A thankful, contented heart is a gift we give to him” I want to give that gift not only to God, but also to my family. After all, we are so blessed.
Here is an exerpt from our Christmas letter that lists some of the ways God was faithful to us in the last year and half. For those of you that received our letter sorry for the repetition.

*One of the most obvious and immediate ways we saw God’s faithfulness was through the Christian community. Immediately after Rhonda entered the hospital we had visits, flowers and plenty of prayer support. Our church brought us meals at least a couple times a week for almost a year. We’ve also had various people wash clothes for us, clean or pay cleaning, take care of our children and drive us to various doctor’s appointments. They have been the hands and feet of Christ in the midst of our difficulties. I’m not sure how someone can go through a difficult time like this without the body of Christ.

*The week that Rhonda went to the hospital was also the start of Perry’s semester long research sabbatical. The fact that Perry did not have to teach classes freed him up to take care of Rhonda and the boys during the most difficult period of Rhonda’s illness. In addition, we’ve seen God provide for us financially despite having a tremendous number of medical bills. Some of the stories of God’s provision in this area would require more space than we have here.

*Although our families live far away, they also sacrificed their lives by coming to visit and take care of Rhonda and the boys while Perry took various research trips to study Christian higher education in Europe. It’s wonderful to have such a caring and sacrificial family that gives of their time and resources in the midst of our need.

* Despite Rhonda’s illness the boys have continued to thrive and grow. They have become great playmates. In many ways they have benefitted from a mommy who was not distracted but very available for hugs, cuddles, and stories. Yes, it was hard when Mommy couldn’t take them school or come to their parties, but in the midst of it they have surprised us with their empathy. For example, Bennett once told Rhonda, “Mommy, I’m sad for you that you’re sick. I know that it’s hard to be in bed a lot.” And Cody often tells mommy that when he gets older he’s going to become a doctor and a cooker and take care of his mommy. We’ve also seen them learn how to take more responsibility at home and help mommy when she cannot clean or vacuum. They’ve been an encouragement and a good distraction during this time. We’ve both appreciated Bennett’s gift of humor and silliness in the midst of the weight of illness. Cody amazes us with his compassion and profound thoughts (e.g., Why did God give us bodies? Why did God make mean dinosaurs? There are three people who will always love you—God, your daddy and your mommy).
* In our marriage we’ve seen God use this illness to slow us down for both times with him and with each other. Having to stay home and say no to the many good activities that can fill your time has allowed us to enjoy more time together as a couple and a family. Not being able to go out on dates for a while, also sure makes you appreciate the ones we have now!

* From Rhonda: “But as for me, it is good to be near God, I have made the Sovereign Lord my refuge; I will tell of all your deeds” (Ps. 73:28). This sums it up well. God has become a very close companion to me. Is it possible to have peace in the midst of adversity? Does having a relationship with God make a difference? Is the Bible applicable to our lives today? I can now confidently say yes, yes, and yes. Without God’s Word and others people’s stories testifying the same, I know that I would have easily been fearful, anxious, depressed, and discouraged. Instead, I have had to deepen my understanding of what it means to walk by faith, trust when I couldn’t see, and choose to remember the ways that God has and is faithful to me. Through this time my compassion for others has deepened and my prayer life is so different. Yes, right now I cannot physically serve people as I used to, but I have learned that it is just as important to serve them by interceding in prayer. In fact, it is a great privilege. I have become very thankful for the things that we often take for granted like going to church, driving, going out to eat, and even going to the store. My learning curve has indeed been steep, but I am grateful for all that I have learned and I am praying for grace, wisdom, and strength to apply it.

This Christmas we not only celebrate God’s faithfulness through Christ but also the many other gifts he gives throughout our lives. Thank you so much for your prayers

It was their idea

Both the boys and I agree that this is our favorite time of year for lots of different reasons. I have really enjoyed starting different traditions as they have gotten a little bit older. Bennett loves to decorate and of course they both love the count down to the 25th using our nativity advent calendar. They also look forward to advent. I grew up doing advent and I have a lot of fond memories related to it. I am so glad that my boys enjoy it too. We also love to read our Christmas books. When they were little I decided each year I wanted to give them a book so that when they are older they can take a Christmas book collection with them. This has become a great tradition that we all love.

Sometimes as a mother you don't always know if your ideas are going to be successful. This Christmas eve, I think I got it right. I decided on a simple supper meal starting with cheese fondue and ending with chocolate fondue (okay, it sounds fancy but it was really just our favorite chocolate chips melted). Bennett's response" Mommy, can we do this every year" and during the chocolate part Cody said " This is the life!

I was really proud of them and surprised when they suggested that the first thing that we would do on Christmas morning was read one of Bennett's favorite Christmas books called " The Legend of the Three Trees", do advent together and then open presents. I wished I could have captured on film them coming in at 7am in their robes and climbing into our bed and reading together followed by lighting our Jesus candle. I think they got the true meaning of Christmas for a few moments......until they were asking " Are there more presents for me? "

Probably the best moment this Christmas season was when we asked them "What is the best gift you can give Jesus?" and they both agreed "My heart" . What a great reminder!

A bit of relief!

The medicine is working! The last two weeks I have noticed a difference and I feel like I am finally getting to a level in which the Neurontin is helping the pain. Prior to this when I would do anything extra like going to the store or parties at Cody's school I would dearly pay for it in the next few days. I have noticed that I am pain, but it does not disable me as much. This is quite amazing for me and is such a nice relief especially before Christmas. Thank you for your prayers. It mean so much to me. Your prayers have certainly helped sustain me.

Several people have asked me if I thought I was progressing and healing from the Guillian Barre. That is such a hard question. I think so, but it is slow. I feel like I am more functional, but I am not sure if it is because I am taking more medicine or I am healing. I do notice that I don't have as much muscle fatigue as I once did and I am so thankful for that. There have been times when I have backed off on my Neurontin and have noticed my pain increases. So that leads me to believe that if I did not have the Neurontin I would be in more pain. I honestly don't dwell on it too much. I have had to learn to thank God for the gift of today and his provision for today. That is the focus that helps me get through.

A Great Day!

Today is a great day to celebrate God's faithfulness. My brother is graduating today from Penn State with his doctorate and I can't begin to tell how thankful and greatful to God for answering our prayers. After a very difficult journey he did it. What an amazing accomplishment for someone who has suffered so much. Oh, I wish I could be there to celebrate with them. However, it is probably a good thing because I would be a mess. Is is okay to carry a box of Kleenex with you?
For those of you who have prayed for him over the years thank you. Does God still do the impossible? Yes!!! I have seen it with my own eyes. Yes, he has improved, however he still has tremendous pain that I can't even begin to describe to you. With God's help and his medicine he is more functional and I am amazed at what he can do.
He really is my hero. Even before I got Guillian Barre he taught me a lot about suffering and now through my experience I totally get what he was trying to tell me. He continues to model faithfulness in the midst of a really hard experience. I will never forget the picture he gave me of God weeping with us during our pain. I have often thought of that and God's presence and compassion has certainly got me through the hard days.

So, I celebrate today with my brother and I give all praise and thanksgiving to God for hearing our prayers and allowing him to have this moment.

Very thankful!!

Thanksgiving was very meaningful for me this year and I have to admit that I often found myself teary. Here are a couple of the highlights of the last few weeks.

First, two weeks ago I was able to go to an evening mission meeting. This was a big deal for me. I felt really emotional that night because for one evening I forgot about my illness and remembered my love for missions. It was such a treat. Because my in laws were here to chauffeur, do laundry and make supper I was able to rest during the day and then I was able to go in the evening. Thank you Joe and Cynthia! Did I tell you that I even got to go out for supper with my husband. Yeh!

Second, I also got to go to our church Thanksgiving supper. It has been long time since I went to church in the evening. I realized how thankful I was for the ability to go to church. I was so thankful for my church family who has helped us so much during the last 16 months.

Thirdly, with my mother in laws help we were able to cook a Thanksgiving dinner and have a few of our Russian friends over. What a blessing! It has been awhile since we have been able to entertain. It was very special.

Traditionally every year the boys go out and get a branch and we put it in a vase. We write things we are thankful for on paper leaves and hang it on our tree. Our tree was full and it was a great reminder of how blessed we are.

1Thessalonians 5:22
Be joyful always, pray continually; give thanks in all circumstances for this is God's will for you in Christ Jesus.

My sweet boys!

Here they are and so cute. They sure make me smile and definitely make me laugh. We recently started a new tradition at our house. Every dinner time is question time. Each person gets to ask a question and the rest of us have to answer it. We have learned a lot about each other and I think that the boys have had an easier time answering the questions than I have. ie. What is your favorite, favorite place to eat? What do you think heaven will be like? What is your favorite animal? and What was your favorite thing to do this week?

Bennett is our project man. He loves to be creative. Give him an idea or plan some kind of craft or project and he can hardly contain his excitement. Don't mention the project ahead of time or you may have to do it at 7am. He loves Legos and building things. He has reputation for taking random things and creating things with it. He also has a great imagination and goes on many adventures to get the bad guys of course. He loves Star Wars and I am convinced would love to be the next Jedi Knight. He is our morning guy and has an amazingly happy disposition. He is very affectionate and frequently stops playing to give his mommy a quick hug.

Cody is our compassionate and senstive one. He has frequently told me that when he grows up he wants to be a doctor and a cooker so he can take care of Mommy and Daddy. I would not be surprised if he did. He constantly surprises us with his profound thoughts. ie. Why did God make mean dinosaurs? Did you know that God still loves us even when we make mistakes? I am glad that there won't be any wasps in heaven! He loves a wide variety of things but his favorites are Star Wars, legos, and playmobil. Sound familiar? He loves his brother and often says "You are the best big brother ever!" He is a great playmate for Bennett and that has been a great blessing for me especially during this time.

So if you come to visit don't forget to bring your lightsaber, scissors, glue stick or in Cody's case you might even want to bring your sword because you may have to pretend that you are Goliath. You never know what kind of adventure you will go on at our house.

A good reminder

Every so often I get out my Guillian Barre book and I probably should more often because it helps me understand my pain. Perhaps it will help you too.
"Pain is an underappreciated symptom that may persist for many years after GBS. It may be neuropathic pain or the pain that results from oversuse of incompletely recovered muscles....Many patients complain of persistent discomfort in their feet. This discomfort may take the form of tingling, an illusion of swelling or tightness or aching pain. The symptoms tend to be worse in the evening or at night...Neuropathic pain is particularly annoying during the nights that follow days during which the patients have been on their feet. Pain improves with time in some patients, but others are left with annoying or disabling pain that persists for years. Even though most patients recover their strength following GBS, some are left with persistent pain. Treatment for neuropathic pain is a challenge. Complete relief is difficult to relieve. "

I have to admit that sometimes it is a struggle because yes I look normal and yes I am functioning, but I am sure uncomfortable. The crazy thing is that from day to day it varies greatly. Yes, I have realized just how much my medicine is helping, but I sure realize how much more I need. I am so thankful that we found something that works, and I am in the process of trying to increase it to a level in which the side effects are not disabling.

Thank you! Thank you! to those that continue to surprise us with meals or help. God is so good to us!! Honestly, there are times in the midst of my pain when it seems exhausting to have to think or call someone for help. We so appreciate your prayers!!

My goal for the next blog------ My boys. Some have asked for a recent picture, and so I hope to show you my sweet boys. They are so funny and full of life.

The battle is real!

There are many days and many moments when I have feel like I am in battle. Battling to remain hopeful, battling to recover, and battling to take care of my family amidst a body that doesn’t want to function properly. And especially battling through scripture and prayer when it feels like the enemy is wanting to devour me and my family. The battle has been more real to me and reading the psalms has helped me realize that David knew how fierce the battle could be. I am so thankful that he wrote his psalms (Ps 46,63) down because it has brought me incredible perspective, insight and has motivated me to fight. Like never before I find myself praying about everything big and small. I have been humbled sometimes when I realize that I should pray more for the little things. I had a great reminder of this last week.

I have needed to buy some pajamas and jeans for Bennett and it seems that it takes me forever to do errands like that right now. It all depends on what other activities we have and my pain levels whether I can do errands or not. I honestly didn’t pray about it, but knew it would eventually get done. Last week there was a box left at our house by my friend who has blessed us many other times with clothes. I probably don’t need to tell you what was in the box….. not one, but four pairs of pajamas and several pairs of pants. I admit, I was teary and so thankful. I often tease my friend and tell her that she must get memos from God because every time she brings clothes to us it is exactly what we need.

I am so glad that he cares for the big things too. I have been battling in prayer for Bennett too. Recently, we discovered he has a learning disability. We suspected this last year, but thought that with practice it would improve. God led us to go and have him assessed at the Baylor Speech clinic which gave us great insight into his needs. We were so thankful to have their expertise and were so humbled when he got a therapy spot for four hours each week. Yes, it is an adjustment and I feel like I am on a very steep learning curve. But the amazing thing is that because of my illness, my life has remained simple and I have time to learn. I really believe through prayer Bennett has adjusted very well to the therapy and I see benefits already. I find myself constantly having to give Bennett over to God knowing that he is in control and that he loves Bennett so much more than I do. There is no doubt that God gave Bennett a special personality for a reason. His laughter and smiles and even his made up songs and bad jokes have brought me joy during the hard days.

I read this quote recently which I thought captured it well

It puzzles me; but Lord, You understand
And will one day explain this crooked thing.
Meanwhile, I know that is has worked Your best
Its very crookedness taught me to cling.

So I will thank and praise You for this puzzle,
And trust where I cannot understand.
Rejoicing You hold me worth such testing,
I cling the closer to Your guiding hand.

A day at a time

Once a week and it usually happens on a Thursday I have and need a rest (bed) day. To some it may seem like an inconvenience but for me it is a necessity and believe it or not usually a blessing. Several people have said to me that on the days that the boys are both at school I probably struggle not to do too much. Occasionally maybe but usually not. I have had to let go of a lot. No, I don't like to be in pain or feel terrible, but the days in bed are the ones when I learn the most. Those are the days when I do a lot of praying and thinking and reflecting.

One of my favorite times of day is at 830am. This is not because I have just dropped off Cody, but because that is when I listen to the Focus on the Family broadcast. Prior to my illness I did not listen and I wish I had. I have been so blessed and inspired by listening to different speakers. This morning was no exception as I listened to Dr. David Jeremiah talk about his new book"When your world falls apart". Listening to him talk about his battle with cancer and what he learned sure resonated with me. Not because I can relate to having cancer but about God's presence, peace and provision during something hard. Interestingly enough he is a speaker that really ministered to me during the first part of my illness. I find I can relate a lot more these days to people who are in pain and I think a great thing is that I am more willing to go to people's place of pain without being uncomfortable. There have been several times in the last month when I have thanked God for using my pain to minister to someone. No, I can't physically help people as much like I used to, but I sure can pray and encourage people.

The good news from the blood work I had done is that I do not have an inflammatory disease ie. lupus, rheumatoid arthritis etc. This leads us to believe that the pain and symptoms are still from my nerves recovering. I have to be honest and say that it has been hard to rest in my diagnoses mainly because some of my symptoms don't match up to the typical case of Guillian Barre. Following the most recent blood work I have had to make a decision to rest in what we know right now and take a day at a time. This past weekend I was more convinced than ever how much my medicine is helping. I was getting low on medicine and had not made it to the pharmacy to get my new prescription. I knew that Perry was going to go grocery shopping on Sunday and decided to wait until then. Unfortunately, I did not realize that the pharmacy closed early. I had no medicine to take at night and as a result slept very poorly because my legs where burning so bad. I am so thankful that we found something to help and I am trying to slowly increase it during the day to get more relief. Please pray that I will be able to tolerate it. From someone who never took medicine it is a big adjustment to constantly be thinking about when my next pill is due. This is an interesting season.

God cares

It is so good to have reminders that God cares about the little things. Here are some recent examples.
1)Our boys are big "WipeOut" fans. Last week it was WipeOut night and the boys were eagerly anticipating their favorite show. What we didn't realize was that it was a two hour show that evening. When eight o'clock came and it was time for bed they were both in tears because they wouldn't be able see all of it. Finally we were able to console them with the fact that we would tape it and they could watch tomorrow. I was praying that the taping process would work properly or I would have some very upset boys. After they showered, I for some reason went to check the VCR and noticed that it was turned off. AHHH!! Perry often automatically turns it off at night and so he did it without thought. Well, thankfully not much time had elapsed and we were back on track. The absolutely amazing thing was that at exactly 900 the video tape ran out of tape. Both Perry and I realized that if he wouldn't have turned off the VCR the boys would have missed the best part of the show. Great reminder that God understands the big picture and we often do not! So glad he is control and I am not.

2)At the beginning of this week I had another neurologist visit and I had been praying that God would help me communicate my questions and concerns. I am so thankful that I found this new neurologist. He is such a good listener and very caring and asks good questions. I feel like he treats me like a person and not just a another patient or number.
We are thankful that the new medicine called Neurontin is helping me sleep at night and my headaches have lessened which is wonderful. The challenge has been finding relief during the day. My body hates activity. I have a lot of muscle fatigue, burning, tingling and deep aching. Some days it is more challenging then others, but it greatly affects my day and my ability to care for my family. There are symptoms that I just don't understand.
We would appreciate your prayers as we try to understand my symptoms and also try to find something to make me more comfortable. The good thing is that my doctor ordered a few more blood tests to investigate some avenues we had wondered before but had never explored.

Sorry, that was the backdrop to my "God cares" story. After my appointment I went next door to Providence to get my blood work done. I thought I had lots of time before I had to get Cody from preschool, but I was wrong. The crazy thing was that the admitting desk put it in the system I couldn't come back the next day. The admitting desk is downstairs and I didn't realize there was a long line upstairs at the lab. I needed help from God because I had already done a lot of walking and was hurting and I knew I would have to get Cody and come back up to the lab and possibly wait a long time. The receptionist didn't give me much hope that I could get in quickly even if I came back within the next hour. So, my strategy was to trust God, get Bush's chicken (that always helps) to keep my hungry five year old busy during the wait and hope for miracle. Guess what I found when I returned ...... two people waiting and a unusually patient son during the whole process. Thank you God for caring for little things!!!

Over a year

It's now been over a year since Rhonda was diagnosed with GB. In many ways life is much less stressful and for that we are very thankful. We can exist at the basic level as long as we do very little extra. However, the last few months have actually been a bit discouraging. Rhonda's recovery seems to have stalled. She also continues to experience significant leg pain if she increases her activity. The first week of school was certainly one of those occassions. It has brought back some feelings and stress associated with the past year. As always, we hope and pray for improvement.

No relief yet

Thank you for praying!! I am tolerating the medicine(less drowsiness), however I have had only a little relief from the pain. Because I have to slowly increase it, it will be a couple weeks before I am on the maximum dose. I am trying not to think much beyond this because I continue to pray and hope that it will work.
It has been a little challenging since the boys came home because my pain went from manageable to difficult to manage. It is amazing how my increase in activity affects my legs and my head. Thankfully, Cody will start preschool on the 21st each morning and Bennett will start on the 26th. We are hoping that this will allow me some rest time each day so that I will be able to handle the activity of the rest of the day.

New medicine

Please pray as I try to adjust to some new medicine that will hopefully help the nerve pain in my legs. A couple of months ago I started taking medicine in hopes that it would help. Intially, I thought it was working but that was short lived and I continue to be really uncomfortable when I increase my activity.
Last week it was obvious when I met with the doctor that I needed to get off of it and try something different. Thankfully the new medicine has had minor SE so far, but I feel so drowsy and drugged. Supposedly this will decrease in time. I am only taking one and I am suppose increase it to six a day. I don't know how my body will respond to it.
Perry and the boys return Tuesday evening and I am praying that God will help me take care of the boys and give me wisdom with how to increase the medicine.

Contentment

It was three or four years ago when I bought the book Calm my Anxious Heart by Linda Dillow. It had been highly recommended to me and so I was interested. I did not necessarily feel anxious or feel that I was discontented but nonetheless I wanted to try it. After looking at the table of contents ( content to be me, content with circumstances, trusting God with the what ifs and if onlys) I knew I needed this book and since it has become one of my favorites.

It was hard to get past the beginning pages. She talked about a friend who had found her mother's journal. In it she discovered her mother's key to contentment. Her mother had worked with the pygmies in Africa for fifty-two years. This is what it said:

*Never allow yourself to complain about anything-not even the weather
*Never picture yourself in any other circumstances or someplace else
*Never compare your lot with another's
*Never allow yourself to wish this or that had been otherwise
*Never dwell on tomorrow-remember that tomorrow is God's, not ours

Wow! Try to apply these for even one day.

There are so many treasures in this book but I want to share a couple of highlights.
* "He infuses contentment into us through his Word"
*"Contentment comes from a proper relationship to God, not from a response to the circumstances. Our what ifs will either drive us to God and faith or they will drive us to worry and dependence on self"
*"Only as our hearts are fixed on our Sovereign, Loving Lord can we be at peace in the midst of the What ifs. We can only trust God when our focus is on Him and not on our circumstances"
* "Our anxiety should be used as a springboard to pray specifically"

There are so many wonderful things in this book and I pray for the grace to apply them in my life.

Being uncomfortable

As you can see from all these entries I have been on a steep learning curve the last year. There is a lot that God is teaching me and certainly a lot of it has been a bit uncomfortable. I have quoted Jennifer Rothschild a lot because her book has impacted me greatly. Her book "Lessons I learned in the Dark" is a lot about walking by faith. She points out that "the wilderness teaches us who we are and whom we really trust". She also said that God is much more interested in our character than our comfort.

Isn't it interesting that we would say that about our children. We are much more interested in their character than our children being comfortable all the time. We often have to make tough decisions for them because we want them to be Godly women and men some day. We want them to make good choices, and so it is with this love that we train and teach them.

Why is it that we don't allow God to do this in our lives? Do we question his love for us and cannot trust that he is more interested in our character?

I have often reflected on how we hate to be uncomfortable. We complain about our busy lives and we wonder when we will get a break. Then when we do get a break we are uncomfortable because we don't know what to do with ourselves. The rest or solitude is awkward. We feel like we need to fill every moment with something. What does that say about our lives? When was the last time you just sat in silence to hear from God? We hate to suffer and when it does come we are surprised and we think of it as an unexpected and unwanted intruder.

I have learned a lot about suffering from my brother and I know that this has helped me a lot during this time. It was very difficult for me to feel sorry for myself because my brother had it so much worse than I did. In fact, through this I have gained a heart of compassion for all that he has gone through . I could now identify in a way I couldn't otherwise.

I honestly admit that I have often been perplexed by suffering and by really hard things that happen. I have met people that have a lot of anger towards God for the problems they face. They have asked "Is God punishing me?"

It is through my brother and other peoples example that I think I understand another piece of the puzzle. I do not deny that sometimes we feel the consequences of our bad choices, but I also think that we live in a fallen world and because of that we are going to be afflicted with disease and problems and we are even going to unfortunately be affected by others bad decisions and mistakes. This is a hard reality! I have come to realize that God is weeping with my brother and me and those that have bodies that are not working properly. God wants us not to focus on the present but on the future where we will have new bodies. This is not our home!

It is with this perspective that I can go on. I can clearly see that he can redeem all things. I look at people who have gone through very hard times with God as their helper and I marvel at their perspective . Only God could do that and so that motivates me to ask God to do that in my life.

Next time: Contentment

The true source of hope

Here are some insights into hope that I have received in the last year.
In January I was struggling. I had relapsed for the second time and the doctor diagnosed me with the chronic form of Guillian Barre. I had suspected this, but it was very hard to accept. What does this mean? How do I take care of my children? How long will I have to be on these infusions? God, please help me to trust you and to put my hope in you. What does that even mean for me to put my hope only in God? God and I had a lot of conversations.

I now realize that there was a death that had to take place. I had to die to myself. I had no control. I remember in tears telling God that even if he did not restore my body here on earth, I would wait in eager expectation to when there would be no more pain, no more tears, and he would give me a new body. My hope was in him!
Amazingly enough, after the process of letting go God blessed us with good news. After a second and third opinion it was confirmed that I did not have the chronic form and hopefully in time I would recover. There is no doubt in my mind that God used this experience to help me put my focus in the right place.

Here are some quotes again from Jennifer Rothschild's book "Lessons I learned in the Dark" that have helped me.

Hope for healing is in him alone. Therefore my soul can wait-wait as long as it takes, even if it never happens here on earth. He alone is my rock and my refuge. My deliverance is not my source of hope-he is .

Hope in anything other than God himself will always disappoint.
When our hope is in God alone, not in what God can do for us, then we will not be shaken.

Don't fix your hope on earthly things like financial security, unruffled relationships, or restored health. The temporary things can never be a true source of hope. Instead fix your hope on God and his eternal word.

A quote from Jennifer's son " If God healed you here on earth you might love earth more and heaven is best"

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

Such things were written in the Scriptures long ago to teach us. They give us hope and encourgement as we wait patiently for God's promises. Romans 15:4

Find rest, O my soul, in God alone, my hope comes from him. He alone is my rock and my salvation, he is my fortress I will not be shaken. Psalm 62:5


Next time: Am I willing to trade my comfort for companionship with God?

It is hard to wait!

Waiting strenthens us by teaching us that our joy and peace and hope don't depend on when our needs and wants are met. Jennifer Rothschild
Wow!! I have had to ponder this statement a lot. It is so hard to wait sometimes. We think our children are impatient. We are not much different.
Recovery from Guillian Barre has indeed been challenging and often very rocky. I felt like I was constantly waiting for the next Dr visit, waiting for the next test, waiting for the next day to come because I couldn't sleep and waiting for any sign of recovery. It has been like a roller coaster. In the midst of the waiting I have found myself saying" God please don't let me miss out on what you want to teach me" He took me literally and has given me treasures that I wouldn't have received if he had immediately taken things away.

Psalm 40 I waited patiently for the Lord, he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire, he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God.

Any vision for the future that is full of failure and empty of hope is not from God.
God doesn't want us to know the future. He wants us to know him. He wants us to trust him to guide us into the future one stip at a time.
Power of Praying Parent

One of my favorites from Calm my Anxious Heart by Linda Dillow
The Lord is my peace. I shall not live in anxiety. He puts me under his wing of comfort and calms my Spirit within me. He takes all my anxieties on Himself adn helps me to focus on him. Yes, though I walk wthrough a time of grave uncertainties and fierce anxieties, I will not fret-for you are my peace. Your word and your presence calm me now. You hold my uncertainties in the palm of your hand. You sooth my anxious mind--You smooth my wrinkled brow. Surely serenity and trust in you shall fill me all the days of my life. And I shall keep my mind stayed on you forever.

Next time: The true source of hope

Is God enough?

I vividly remember the day eight months ago that I was listening to a talk on the radio by Dr. David Jeremiah titled God is enough. I was quite intrigued by his message because I had been wrestling with this thought as I lay in my bed. I was in pain, could do very little activity and I couldn't read because my eyes were bothering me. It was in the spot that I was a very attentive listener.

Dr. Jeremiah shared that through his experience with cancer he had learned that God was indeed enough. He went on to say that if you don't have a relationship with God I would encourage you to get one because the storms will come and having God in the midst of it will make all the difference.

It became very obvious to me that it is not if but when. Several of my friends would say to me that they were scared about what was next in their lives. They said they didn't know how they could handle my situation. I think we all have storms in our lives (i.e. difficult marriages, physical problems, job stress). The reality of living in a fallen world hits hard sometimes.

I have pondered Dr. Jeremiah's message and indeed asked "Does it make a difference?" and it wasn't until recently that God revealed to me something very profound.
Almost eight years ago Perry and I went through a very difficult season. We had had multiple moves, a sick child , a miscarriage, and a loss of a dream that was very hard for us. Looking back I realize that prior to this season I did not have a close relationship with God. I had a relationship but it was not vibrant and growing. I was working full-time and busy with life. I think we can all relate. When the storm hit it was very hard and I struggled. I was not making some good choices and I was choosing to look at the waves instead of God.

This storm has been so much different. Yes, my physical body is struggling but spiritually walking closely to God in the midst of it has been amazing!

I am very thankful for this comparison and I pray that God would continue to remind me how much I need him for the big and little challenges in life. I am even more thankful for his grace for the times I so easily forget.

Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16

Next time: It is hard to wait!

Time to write

This entry seems long over due. I have wanted to type some of my reflections about the last year and honestly it seemed too exhausting as I have been trying to manage the kids and my recovery this summer. This week I feel like the desire has returned and I am motivated to type in hopes that it will encourage and strengthen you. This is part of the testimony I shared with a few groups at our church.

Only in the most uncomfortable places in life can we see the face of God most clearly. Jennifer Rothschild

I can honestly say that my experience has certainly helped me see God more clearly.

On August18 th my life drastically changed. I was given a diagnosis that seemed so unfamiliar and the unknown was hard to take initially. All I could think of was a simple verse that I had taught Bennett and Cody. "When I am afraid, I will trust in you"

People would say to me "God is in control, God is good, Good will come out of this" Yes, I had experienced this before, but somehow I found myself asking no matter what? I knew then that God was taking me on a deeper journey with him. Was I willing to trust him? I soon realized that I was going to have to make some tough choices. Was I going to live in anxiety or was I going to choose to draw closer to God and experience his peace and love for me. This took a lot of effort some days. I knew I was going to have to work hard at keeping my eyes on God.

How did I do that? I had been given a journal and in it I began to write. Not necessarily my reflections because that seemed too exhausting, but verses from the Bible and quotes from books. I realized I had all these great books on my shelf but couldn't remember specifics. This journal became so precious to me because I would lay it beside me on my bed and I would ponder and reflect and pray. Instead of having lots of different books I had all my favorites parts in one place. I became very inspired by heroes of the faith. I needed courage to walk this painful and difficult road.

I also listened to a lot of worship songs in the beginning days and one was especially meaningful to me.
The voice of truth tells me a different story, the voice of truth says do not be afraid, the voice of truth says this is for my glory... Out of all the voices calling out to me, I will choose to listen and believe the voice of truth.

I want to share some of my favorites from this journal. This entry I will focus on a couple of examples of how God showed me he was there.
1)Even from the very beginning God showed me that he was there. It was no coincidence that not only did I have a Christian nurse in the hospital but it was a nurse from my own church. She was such a blessing and encouragement to me.

2)"Oh, I have so much to learn. The wilderness really does show us who we really are and who we trust. I confess I am not very proud of where my thoughts have been. In discomfort it is amazing how it is easy to falter and wonder why or how long. I should be resting and trusting that God knows, that he is here, that my hope comes from him not from when my body feels better. I will not forget the night that I was digesting the doctor's visit I had had that day and the reality that things were not progressing like I had hoped. I remember thinking " help me know you are here". It was at that moment that I looked out at the most brilliant sunset. Wow! He was here. Again, the next morning when tears were so close that I chose Michael W. Smith CD Worship. It was no coincidence that I needed those songs. "Draw me close to you, never let me go....help me know that you are near. It wasn't just that song but the next one that made me weep. "Turn your eyes upon Jesus..... and the things of earth will grow strangely dim" Oh Lord, please teach me how to look to you."

There are so many more examples of how God has shown us his love and compassion and I am so thankful. He is so faithful.

Next time: " Is God enough?"

Status Quo

The reason why we haven't written for a month is that little has changed. Rhonda continues to be able to do a number of basic functions. She can drive, take care of the kids, make meals, etc. However, she continues to experience signficant leg pain for which she has to take medication. If she's on her feet too much the pain gets worse. She really can only do one outing a day at the most.

Currently, Rhonda's mom is here for the next week so that is a big help. My hope and prayer is that Rhonda will also be able to rest a bit while I'm gone with the boys to Colorado for a week and a half. In addition, we hope that once schools starts back up Rhonda will be able to inch forward some more with her recovery since the boys will be in school. I guess those are a lot of hopes. It's now been eleven months, so it's hard to know what the future holds. Still, we continue to remain hopeful.

Our Current Pattern

For the first part of this summer, we seem to be in a tolerable, but not ideal, pattern. Rhonda continues to be able to take care of the kids and do basic household tasks. However, if she has to exert herself in extra ways (e.g., a trip to Fort Worth to renew her permanent resident card, doing more with the kids), she often pays for it. Her leg pain increases and she even has some of the old problems with headaches and strained vision. Fortunately, rest seems to help her body settle back down. We're thankful for the babysitting and meal help we've received, because it helps Rhonda get the rest she needs to get back on track. It's hard to tell right now whether we're making progress, but life certainly feels less stressful than the previous months. We continue to hope and pray. Thanks for all your prayers.

Good news!

We are so thankful that the doctor confirmed today that Perry did not tear anything in his knee. The MRI did show that he has a bone bruise which does not require any intervention other than rest. Hopefully in 6-8 weeks he will be back to normal with no further problems.

The last two weeks have definitely been challenging but we certainly see improvements for both of us. Perry is now walking without crutches and the swelling and stiffness are much better. Last week with the increased activity and stress my pain levels were terrible and the new medication I was trying was not helping. This week my pain levels have been manageable which is so helpful. Having the boys at VBS each morning has allowed me some rest time so that I am able to be more active later.

Despite the craziness we have had a few laughs. Last Sunday at church we were waiting for the elevator to take it up to our Sunday school class seeing that we were both a bit diabled. There were some elderly ladies standing there greeting us. As we were visiting, one of the ladies asked us if we were newleyweds and we started to laugh and said that no we have been married almost 12 years. We joked that the reason we were holding hands was that we were holding each other up ( not really). Well, we take their comment as a compliment and are thankful that through the past year we have grown to appreciate, love and need each other in a deeper way.

Interestingly enough last week we had been talking with the boys about how God is a keeper of promises. I have really been convicted that I need share with them about what God is teaching me and so I was glad to share how God gave me the verse Isaiah 41:10 as a promise back in January. Cody and Bennett were able to pick some promises that I had written on cards. Cody picked "The Lord is my helper. I will not be afraid" (He has a great fear of wasps and bees). It was a day later that Perry injured his leg and I realized that we would need that verse as a frequent reminder that week.

Thank you so much for your continued prayers!

Bad timing for a knee injury

One of the things that has helped me the past few months is being able to play basketball again now that my thumb is better. Unfortunately, someone fell into my knee yesterday while I was playing and did some damage. A kind Baylor trainer took an initial look at it and tenatively concluded that he did not think I hurt my ACL and perhaps only tore my meniscus. We'll only know more after further doctors visits and exams (the first starts on Thursday). The current result is that I'm now on crutches. There is never a good time for a knee injury, but it sure feels like this is certainly not the time. We'd appreciate your prayers. PG

Good visit

We are very thankful for a good visit with the neurologist. He was very thorough, patient amidst the complexity and compassionate. I left feeling like he really wanted to help me find the right combination of medications that would help me be more comfortable. Of course this is going to take some time, but we at least have a plan.

It is always amazing to me how over time more pieces of the puzzle come together. The greatest insight I received was understanding why I still have a lot of pain even though my nerve conduction tests are normal. I had not understood the nerve tests only test the heavily myelinated nerves that control movement and strength. This means that there is no clear way to see how the other nerves(ie.those responsible for pain) are functioning. The key then is to manage the symptoms while they heal. Of course, that means that there is no way of determining when the healing process will be complete.

So, I continue to be reminded and reflect on a quote that I found eight months ago.
"Waiting strengthens us by teaching us that our joy and peace and hope don't depend on when our needs and wants are met." Jennifer Rothschild
Rhonda

P.S. I can't forget the answered prayers this week. We have been talking and praying about what we would do this summer. Perry was pretty concerned about how I was going to manage with the boys all the time. God had it all figured out for us and graciously provided us with a friend's daughter to help me. We are so thankful!!

He is able!

Last Friday was quite a day! Do you ever have those days where everything seems to hit at once? That was how I was feeling. Emotionally I was struggling. It wasn’t that I had given up or didn’t feel that God was there or couldn’t work it out. I was just tired. Tired of hurting and tired of trying to figure out what neurologist to go to, as well as tired of trying to accept the fact that I am going to have to be on more powerful medication to address the pain. It didn’t help that Thursday we received two bills from the hospital and Friday we received a significant bill from a lab that we weren’t expecting.

Little did I know that God was planning a surprise for me that afternoon and evening. Not only did I find a local neurologist that was highly recommended to me and who had an opening in 10 days, but we received a unexpected check from an unexpected source to cover almost exactly what we still owe the hospital. Wow! Needless to say I cried. It was so humbling to realize how much God cares for us in the midst of this time. There is absolutely no way that this was a coincidence, but divine intervention by a loving God. He continues to remind us that nothing is impossible with him.

I continue to remember his promise to me: Isaiah 41:10 “So do not fear for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

Choosing to remember

It is so nice to have Perry safely home and to know this is the last overseas trip he will be making for now. It was wonderful for me to have his parents again with us. This helped a lot and gave me a break from chauffeuring the boys. I needed it. I feel like my leg pain has decreased a little bit as a result. The last few weeks have been challenging in that I have had so much more nerve and muscle pain as well as more headaches. Honestly because of how the last 6-8 weeks have gone I thought that was behind me. It is a constant reminder that the recovery is long indeed. It also is a great reminder of the need for me to keep things simple. Meaning that I have to be very calculative about my activity. I just can't run to Wall-mart for a quick errand if I know that I have something later in the day. When the boys are not here I have to rest or I can't handle the activity later. Because the boys are more active and outside more that is about all I can handle. Quite honestly this hard! I have come to the conclusion that even if I feel fine at the time it doesn't mean I can do it. I still have to limit my activity because of the accumulative affect is not good.
It was so good to be a church on Sunday for Mother's day and one of the worship songs we sang was a great reminder of what God has been teaching me. It said "I will remember, I will remember the gift of God's son...I will remember his faithfulness". God is constantly giving me opportunities to apply what he has taught me. From the very beginning of my illness I feel that God was asking me to make life giving choices. He wanted me to make the choice not to be fearful and anxious but to choose to turn my focus to him and to learn how to trust him. Sometimes I have to admit it meant a moment by moment decision. The result I have to say is amazing. Taking my eyes off myself and focusing them on him has given me joy, peace, and hope that is not temporary or fading.
Very early on I used a journal to write verses that strengthened me. I also used it to put quotes from books I loved and from authors that I considered heroes of the faith. I didn't realize what a treasure this book would become. There was always a quote or verse or something that would point me back to God. I feel like it has helped me apply and helped sustain me through this time. I continue to read parts of it every day and I am continually adding new insights, verses, or quotes. I hope to share some of them in this blog in the near future.
Time to close. My son is calling.
Thank you for your continued prayers.
Rhonda

Flare Up

This week we've had a reminder that Rhonda is still going through a recovery that has ups and downs. After getting out a bit more last week, Rhonda has experienced a flare up. Her headaches have come back and her legs are bothering her more. It probably doesn't help that we're in the midst of a busy, stressful times (I'm going to Eastern Europe this Sunday and the kids have quite a few activities). Fortunately, my parents will be here this Friday to help. Overall, we continue to realize that the healing battle is fare from over. Thanks for your prayers.

Steady gains

Wow, it's hard to believe it's been almost two weeks since I last blogged. You can take it as a sign that we're steadily moving back into life. Rhonda continues to make steady strides in her recovery. She even shared in Sunday School and MOPS this past week all that God has taught her during her illness. Hopefully, she'll be up for blogging some of her thoughts.

She still has to take breaks, but she's able to do more. She's driving regularly, taking trips to the store (although I'm still on grocery duty), doing laundry, preparing some of our weekly meals, and taking care of the kids. We still greatly appreciate a meal or two during the week and some help with cleaning that allows Rhonda to gradually ease back into life. Everyone's spirits are up.

You can pray for a couple things. I'm going to be taking my final planned research trip to Europe during the first part of May. My parents will be down to help Rhonda with the boys. In addition, summer will place some new demands upon Rhonda, so we pray that it will not become an increased time of stress. Again, thanks for your prayers.

Some more firsts

I realize it's been a while since we last blogged. I guess you could say it's a sign that our emotional stress is lessening, and we're picking back up with some of the business of life. We continue to enjoy numerous firsts. Rhonda attended a Baylor baseball game this weekend as well as Sunday School and part of a worship service. We also saw Horton Hears a Who in the theatres (we'd recommend it). It was our first ever movie together as a family. She also had lunch with Bennett at school, took the boys to the dentist office and Bennett to a doctors appointment. As you can tell the added fun and driving helps lift everyone's spirits.
The fact that her eye problems and headache problems are diminishing helps a bunch. Rhonda still pays for the increased activity (especially with pain in her legs), but she is able to receive relief with rest and Extra Strength Tylenol. Overall, we thank the Lord for the progress we've seen. We're certainly not back to normal, but it's nice to taste moments of fun and normalacy.

Perservering

Perry says it is my turn to write and in that I find myself not knowing how and what to say. The last few weeks I have started to reenter life and with that have come lots of emotions. I have been overwhelmed, teary, joyful and even speechless in wondering how to to talk to people. Many have said "You look so good" and somehow the only thing I can muster is " I am glad the outside looks good". How do I respond to "How are you?" In the midst of all this, I am so thankful for my progress and especially for the ability to do things more as a family. That is such a blessing!

The part that is hard is that I find myself mentally ready to move on but my body is not ready. Last week I made the decision to go to Cody's Easter party at school. He was so excited! I felt like I could handle it. In combination with usual things at home my body did not like the increase in activity. The last four days I have spent a lot more time in bed and had a lot more pain and weakness in my legs. Unfortunately this means I am not sleeping that great either. I am constantly praying for wisdom to know how much I can do because my body doesn't always give me enough warning. It is during these times when I get my little journal out and I read all the quotes I wrote down from books and scriptures that God has given me. Then I pray and I pray for perserverance.

"Perserverance is how we cling within the grasp of God. It is waiting, it is staying and standing even without visible results... The Light offers constant pep talks that help us to persevere.
Hope causes you to have courage to claim God's promises and the bravery to believe revelation even when reason abandons you" Jennifer Rothschild

I am so thankful for heroes of the faith. I am so thankful for all of you who continue to pray and bless our family with meals and cards and gifts. I am thankful for the good that God has brought from this and all the things that he has taught me and my family. I pray that I will remain faithful and will apply all that he has taught me.

Celebration week

When going to church today, Bennett asked with excitement, "Mommy's coming too?!" It expressed the hesitant sort of excitement we've felt during our whole celebration week. Rhonda continues to do some seven month firsts (a visit to Sunday school, a trip to take a gift to a neighbor, a drive to a restaurant, etc.). In fact, her first trip in seven months to Dollar General for one item took so long (45 minutes--it's 3 minutes from our house), I almost went to look for her. She said she just go carried away with being in a store again (and bought a few other things).

She still has to watch herself. Her Monday taking care of the boys for 5 hours took it out of her. She then had to spend the next day spending significant time in bed to recover. At those times, I feel the old fear and frustration returning. Fortunately, this was the only significant set-back during the week. I can certainly feel the weight of the last seven months starting to lift a bit with her progress. Even doing the laundry and grocery shopping doesn't feel so draining.

The kids are also excited about the changes. Rhonda lifted Cody out of our bathtub to our bedroom and he exclaimed, "Mommy, you can carry me again!"

One of the best parts of celebration week actually occurred the Friday night before it started. Bennett told us that he "wanted to ask Jesus into his heart." Cody has always been the one of the two to vocalize deeper theological questions (this week it was--"Why did God make mean, meat-eating dinasaurs?"). Bennett, however, has really started to show some wonderful understanding of deeper spiritual issues--it is the real reason we named this week as celebration week.

To end our celebration week (spring break), we brought out our goblets and toasted with Dr. Pepper and 7Up. Cody showed the most originality with toasts to his "sweet mommy" and Daddy "for bringing Burger King." Aside--Thanks so much for the multiple suprise gifts from distant friends and relatives for meals. They've come at a great time and have really allowed us to celebrate Rhonda's progress and enjoy a less stressful spring break.

As always, thanks so much for your prayers and support. Going back out into "normal life" again produces a different sort of emotional rollar coaster. Rhonda said that she has some of the same feelings that she had when she returned from her various mission trips to Russia. It's almost like she's going through "reentry" of a different sort. We would appreciate your prayers for us during this time of hope and transition.

Steps forward

We've enjoyed what feels like some steps forward this week (instead of the inches). Rhonda is now driving and taking some short trips on her own. In addition, we went out to eat as a family again and went to church together for the first time in six months. She's also able to read a bit more. Overall, knowing that her nerves are healthy has really helped Rhonda feel like she can be more aggressive with her activity. Still, she still needs times of rest after extensive activity. We're also doing our best to avoid stress.

It also feels weird to have some of the stress from the last six months start to lift (it also helps that the boys are healthy). We've declared spring break as "celebration week." We feel like we have plenty to celebrate. Even the kids are asking some great spiritual questions. Rhonda and I talked last night about how it almost seems like the past six months have been a time of spiritual growth in their lives. Again, thanks to everyone for all your support and prayers this past week. Your loving witness has also made a difference in their lives as well.

A very good doctor's visit

Today, we had a very good visit with a neurologist with Scott and White who specializes in nerve testing. He confirmed two things. He confirmed Rhonda's initial diagnosis of Guillian Barre and the fact that she does not have the chronic version (CIDP). The nerve conduction tests showed that she does not have permament nerve damage. In addition, he helped cleared up some of our questions or reminded us of things we needed to remember. For example, the question in my last blog was why Rhonda still had GB symptoms if the neurological tests indicated no nerve damage. He noted that GB patients will still have the symptoms of GB even if nerve conduction tests show there is no damage. After all, she is likely still fighting the triggering agents (which can be either virus or bacteria) that cause one's immune systems to attack and demylenate the nerves.

Additional blood tests we received back this week have also helped reinforce this point. Although blood tests cannot be used to diagnose GB, they do detect the antibodies to the microorganisms that trigger GB. Although we (or maybe I) intially thought the triggering agent may have come from the bacteria associated with food poisening (campylobacter jejuni), blood tests have shown that Rhonda has exceptionally high levels (more than 15 times normal) of antibodies associated with the Epstein-Barr virus (the virus that causes mono but is also a triggering agent for GB).

The doctor today also reminded us that GB recovery takes a long time (often 6 months to 3 years) and that we should continue to remain patient. Her body is likely still fighting the triggering agent and her immune system is still healing. We're only at the 6 month mark. He also said something that I had read in neurology journal survey studies of GB patients, but it was good to hear again. In a significant minority of GB patients, there will be some symptoms from GB that one must continue to battle for some time (and for some--through life), but this does not mean a person has CIDP (the chronic form of GB).

Overall, we drove home feeling like we had some clear answers and direction regarding the treatement of her GB symptoms. Of course, we still have some questions about her eye and headache problems, although the doctor did offer two thoughts about her headaces. He has seen cases of GB that do have these type of headache problems. In addition, he also notes that IVG treatments can also add to headache problems. Rhonda will see an eye doctor again on Monday to explore the eye issues further. As always, thanks for your prayers through this while time. We continue to pray for complete healing and recovery.

Actually, I have also neglected some good news. Rhonda has been walking more this past week, and she has started driving for short trips again. We're thankful that she's showing some progress (especially with regard to her legs and her strength).

A family day out

Wow, I didn't realize it had been ten days since I last blogged. It's been a mixture of business, tiredness, and sometimes not knowing what to say (and not feeling like saying much). The past ten days have been quite an emotional rollar coaster ride. Two weeks ago, we had started to come to grips with a diagnosis of CIDP. Then, the visit to the doctor at Scott and White leads us down another path--the rejection of the CIDP diagnosis and more tests to gauge the extent of any nerve damage (this coming Friday). As you can imagine, we've felt a variety of emotions and thoughts (anger, frustration, feeling like we should have obtained a second opinion much earlier).

The rejection of the CIDP diagnosis is clearly good news. Nonetheless, no longer having a clear diagnosis makes us start to rethink everything we've been thinking and doing. If Rhonda's nerves are healing what is the source of the symptoms? Instead of making sure Rhonda rested to make sure her nerves healed and she does not have a relapse, do we need to really push more? The tests on Friday and some additional blood work may give us some answers but they may not. It has been especially hard on Rhonda as she has sorted through these issues. Please pray especially for our outlook in the midst of this uncertainty.

In our lives, we've started being a bit more active. Last weekend, we had our first family day out in quite some time as Rhonda joined us for ice cream. This weekend we enjoyed a great day at a friend's cabin near Belton. Rhonda was able to walk around by a creek a little and she feels like her legs are progressing (although the headaches remain). Even in the midst of these emotional ups and downs, I've especially felt our spirits lighten at times. We remain wary but hopeful and ever eager to find and rest in the truth.

doctors visit

We had our visit with the neurologist at Scott and White today. Based on his initial assessment, he does not believe Rhonda has CIDP (the chronic form of Guillain-Barre). However, he wants Rhonda to have some more tests that will help to measure nerve damage/demylenation. We'll be visiting the specialist who will conduct those tests the last day of February. While we welcome this possibility, we still need to wait for the tests. In addition, even if CIDP is eliminated as a diagnosis (which may or may not happen), it does not help explain Rhonda's current symptoms. In that regard, the visit merely raised some more questions. Again, we await the next doctor visit.

Hope

It’s felt less stressful the past few days. The kids are not sick, Rhonda has not had any relapses., and we don't live in Calgary where it's minus 10. My baseline for the good life is a bit less these days.

Of course, even these circumstances can change. Rhonda and I had a good talk this weekend about what gives us hope. It can’t be health, the next doctor’s appointment or even the next round of IVG treatments. God and the hope of ultimate glory with him remain the ultimate source of what sustains us.

When I started this blog almost six months ago, I thought it would be a helpful way to communicate Rhonda’s progress. What I thought would be a blog of progress has turned into a blog of continuing struggle. Bennett now even talks about time and events recalling, "yes, that happened when mommy could run and wasn't so weak." Time for our family now seems to be marked now by pre CIDP and post CIDP.

When facing the possibility of a chronic condition that may change your life for the next 40 years you really do find out where your hope lies. It can’t be in what one will give to God. We thought we’d spend our lives serving God overseas and health issues struck that dream/hope down. Rhonda enjoys above all to give to others, but she is now limited in her ability to practice what she enjoys above all. I have a heart for researching what God is doing overseas, but now my travel will probably be limited. Hopes and dreams in this life, even good ones, can come crashing down. As Paul says in I Cor. 15:18, “If only for this life we have hope in Christ we are to be pitied more than all men.”

Of course, we also don’t abandon prayers for God’s kingdom to come and be manifest here on earth—the hope for healing certainly reminds us of the hope for God’s kingdom.

Wednesday we have an appointment with a neurologist at Scott and White. We do pray that the doctor might be able to shed some additional wisdom on Rhonda’s condition. While things have stabilized a bit, Rhonda is not moving forward in some areas. Her headaches and eyes remain a problem (she went to bed early with a bad headache tonight, because she did too much reading today). Her leg strength does seem better, but it remains limited. We pray, wait and hope.

healthier kids

I had to laugh on Tuesday morning. It took two friends to help us take care of our sick family. One came to stay with Bennett while I took Cody to the doctor. Another came to take Rhonda to the doctor. Fortunately, things are a bit better. On Wednesday we got both kids back to school, so it feels like we're back to three out of four being healthy.

On Tuesday, the nurse practioner suggested that Rhonda try a new medicine that may help her with some of her nerve pain and headaches and perhaps evern her eyes. Since Rhonda does not always react well to medicines, please pray that it would work well and that she will have no adverse reactions. Rhonda will also continue to receive the IVG treatments once a month (sooner if needed). In March we have an appointment scheduled with a doctor at Scott and White to see if he has any other suggestions.

In the meantime, we continue to pray and hope for progress. Thanks for everyone's support. In fact, throughout this whole time we've continually had folks ask how they can help. Right now, the best way to help would be to contact Brandi Ross who is coordinating meals: tross14@hot.rr.com If that doesn’t appeal to some folks, gift cards to local restaurants are another option.

As for our other needs, the Lord has graciously provided. It’s been really good for Rhonda to have support from a college student on Tuesdays and Thursdays. She is a tremendous help with the kids and housework.

no dull weekend nights

Now, that my thumb has healed I often have the feeling that I'm the one healthy one in the family. Today, we're home from church after dealing with a fever and and ear ache during the night. Actually, the last two nights have been eventful. Saturday night Bennett woke up having trouble breathing. It's really the first asthma attack he's had for a long time. Fortunately, Rhonda is still well enough to help do some nursing (asthma medication is also a wonderful thing). The attack seems to have been helped by a virus that also has produced a fever for the last couple nights. Last night at 4am, we had both kids up with Bennett complaining about a fever and Cody complaining about an ear ache. Thank God for motrin. This morning the kids are happy, listening to some kids praise songs (thanks for the praise CD from our choir ministry--the kids love it), and playing.

Fortunately, in the midst of all the sickness Rhonda has been doing a little bit better. Her GB symptoms and headaches are much more under control. Although the IVG treatments clearly helped these symptoms, her eye problems remain unchanged. Even helping Bennett with some reading homework strains her eyes. We have an appointment this Tuesday with a nurse practioner where we hope to revisit what we need to do regarding her eyes. We've already been to the eye doctor and he claimed that he did not see any nerve damage.

Again, thanks to everyone for your prayers and help. It's been incredible. We must admit that it's sometimes hard to receive (especially for my wife who has the gift of giving and serving). The Lord is sure teaching us some wonderful lessons about gratitude.

I'm sad for you mommy

"Mommy, do people die from Guillian Barre?" Bennett asked this question tonight. Bennett is not a child who feels the environment around him. In fact, his constant silliness and joy in the midst of our difficulties has been a wonderful gift from God throughout this time. Still, as his question revealed, he's starting to understand everything a bit more. He went on to comment, "Mommy, are you sad you have Guillian Barre? I'm sad for you mommy."

Cody feels it all more--probably because his weekly schedule is much more chaotic than Bennett's. Throughout this whole time, he has struggled with mommy's sickness. Still, he also makes us smile. He now likes to be called Dr. Cody as he pretends that he is taking care of mommy.

Rhonda continues to feel improvement with her back soreness and pain. Her GB symptoms have also subsided to pre spinal tap levels, although they continue to flare up with increased activity. Rhonda's headaches and vision problems continue, although if Rhonda stays on top of the headaches she can control the severity of them.

Both of us are now struggling with how to think about this issue. We remain hopeful, but we also start to wonder if we need to change from living like this will slowly get better over the next six months to thinking more about this issue as a chronic problem. These are not easy discussions. We often feel too tired or emotionally drained to go that direction. We pray for wisdom and grace.

Headache

The good news is that Rhonda was able to walk around a bit more today and her back pain is also diminishing a bit more. Plus, the boys had a good day with the sitter who will be coming on Tuesday and Thursday. Cody was especially chatty with her, according to Rhonda, which is a blessing since he tends to be a bit preferential in his affections and openness.

Unfortunately, Rhonda's headache was so bad tonight that she spent the whole evening in bed. For some reason her headaches are the worst during windy days. It's times like these that I feel a bit like a single parent. Fortunately, I had a good time with the boys at the library and the Lord provides strength.

Saying good-bye to parents

We said good-bye to my parents this morning. We were all a bit weepy and sad. They came at such a difficult time and really ministered to us. I'm so thankful for their godly servants heart and example.

We're trying to settle back into life, although we're again starting recovery from further back. Rhonda's back is a little better, but her other symptoms remain the same. The effects of the four IVIG treatments usually take a few days. By the way, my brother sent a web site for a British group that he found quite helpful. I think it does do a good job of explaining CIDP in plain language. It is: http://www.gbs.org.uk/info/cidp.htm

One answer to prayer is that many of the needs I wrote about last blog have been met in various ways. We have found a college student to help us on Tuesdays and Thursdays. We've also had folks give us books on tape and point us to further resources. Thanks so much for your help.

Aggressive Treatment for CIDP and the future

We had a helpful visit with the nurse practioner in the neurologist's office yesterday. We agreed that it appears quite clear from all Rhonda's symptoms that she probably has Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) which is the chronic version of Guillain-Barré. In addition, in light of her deteriorating condition recently, the nurse practioner ordered four more treatments of intravenous immune globulin (IVIG). Rhonda will have those over the next four days In addition, it is likely that she will need one each month to help control the symptoms. The prognosis for CIDP patients, similar to GB patients, varies. Of course, we're hoping and praying for a full recovery.

Currently, Rhonda continues to experience back pain from the blood patch that was needed to address the problems caused by the spinal tap. In addition, her CIDP symptoms have worsened so that she can no longer walk as much around the house. Fortunately, she does not have the balance problems that she had right out of getting out of the hospital, so she can still take care of her basic needs without a walker. She also continues to have headaches and vision problems. The vision problems are actually some of the most difficult for Rhonda since she cannot read. Even helping with the kids homework, which is a big help, becomes more difficult. Of course, we're hoping that the IVIG treatments help further her progress next week.

Unfortuantely, while I was able to leave Rhonda with one or both of the kids for short times, I currently cannot do that. By God's providence and grace, my parents have been here for the past two and a half weeks. They've been a wonderful help and support. However, they will be leaving this Monday morning.

Folks have asked how they can help. Right now, we will be looking for someone to come and stay at our house with Rhonda and Cody (and later Bennett when he gets home from school) from Tuesday 12:30 to 5:30 and Thursday 2:30 to 5:30. In addition, this Monday, we'll need someone from 2:30 to 5:00. At the other times, Cody and Bennett have school or I can write/work from home.

In addition, if anyone has books on tape that you think Rhonda might like, I'm sure Rhonda would appreciate them (she likes Christian fiction or nonfiction, but I'm sure she's open to other options).

As always, we are so thankful for the support family and friends have given us. Thanks so much for all the meals, rides, gifts, prayers, etc. I can't imagine what it would be like without you.

one day of progress but then...

It's hard to ride this emotional rollar coaster ride. Yesterday, it finally felt like we had some forward movement. Rhonda's spinal headaches had went away and the GB symptoms had seemed to subside. However, this morning Rhonda said she had a horrible night of sleep due to back pain (from the blood patch procedure) and her GB symptoms seemed worse. It seems like we get one additional symptom from a medical test fixed but then that new fix now makes the problem worse (e.g., back pain).

A day in the hosptial

Today, Rhonda and I spent the holiday in the hospital. She received her blood patch for headaches caused by the leaking spinal fluid this morning and her Immunoglobulin (IGG) treatment for the Guillian Barre this afternoon. Fortunately, the patch seems to be working and Rhonda is getting some of the first extended hours of sleep she's had in a few days tonight. All the stress on her body seems to have caused the Guillian Barre symptoms to have flared up again. We're hoping the IGG helps. The staff at the hospital were great. When Rhonda left for the blood patch, one nurse popped her head in the room and told me she was praying for Rhonda. For some reason, it just caused a bust of tears that had been building up this weekend. The few quiet hours in the afternoon we both celebrated feeling the stress lighten a bit. Rhonda has voiced more, however, the weariness she feels from fighting GB. It's now been five months.

I was able to obtain the results of the MRI today. It came back normal. Tests have consistently ruled out MS.

In bed

Rhonda has remained in bed since her spinal tap on Wednesday except for trips to the bathroom and one bath. We're basically waiting to do the blood patch on Monday which should hopefully stop that spinal fluid leak that is causing the headaches. In addition, she will get an immunoglobulin treatment. We hope that will help with the GB symptoms. We have no idea when we'll hear about the results of the tests. We're also going to be looking into getting another opinion from another neurologist.

Cody is slowly doing better. We're thankful for the tubes in his ear since he's had quite a bit of drainage from one ear. The rest of our family is also on flu medicine to make sure we don't get the flu.

As always, thanks for your prayers. My parents being here has allowed us to stay sane. We both still feel the stress and find comfort in the words of Scripture to not fear, trust in the Lord and to cast our anxieities on him.

backwards

Sometimes one wonders whether some tests are worth it. The spinal tap on Wednesday has resulted in severe headaches for Rhonda (on top of the headaches she has from GB). In addition, her GB has flared up again. Usually, it only hurts in her legs when she does too much activity, but now she feels numbness and burning in her legs and arms. We're not sure why. We called to get the results which we had understood we could learn about on Friday. The doctor is out and won't be back until Jan. 28. Needless to say, we were quite frustrated.

On top of all this, Cody has come down with the flu. Only mommy could console him, so he slept in her bed one night and she hasn't gotten a lot of sleep. We don't know if Rhonda is also battling it and that is why she is feeling bad. She's taking tamaflu.

Please pray that Rhonda can make it through the weekend. She has an Immunoglobulin treatment on Monday that we hope will address her hand /eg symptoms. We're also praying that the spinal cord headaches subside so she does not need a blood patch. We also hope and pray she doesn't get the flu. Right now, it feels like a long time until Monday.

Thankfully, Cody does seem to be doing better.

More tests

Today, Rhonda completed the last of two tests (a MRI on Monday and a spinal tap today). We'll probably learn about the results on Friday. Basically, the doctor is checking to see if she has Chronic Inflammatory Demyelinating Polyneuropathy (see http://www.ninds.nih.gov/disorders/cidp/cidp.htm for a short summary). If so, the treatment options are largely the same as that for GB. For now, we wait.

Fortunately, in the midst of this hectic times, my parents have been here. It makes such a difference to have such wonderful help. Great parents are a wonderful blessing from the Lord.

Going backwards

Rhonda said tonight that she feels like she's moving backwards. Her legs are bothering her now more and her eyes and head continue to give her trouble. After five months of telling ourselves that we just need to be patient and allow for the long-term recovery, we're beginning to wonder. It looks like Rhonda will not be able to have the spinal tap and MRI until late next week. That means it will be another week and a half before the doctor is able to tell us anything. We continue to wait and pray.

A new year but more of the same tests

Today, we had two afternoon doctor visits. One was to check on Cody's ears and the other was to check on Rhonda's eyes and head which continue to bother her (she experiences eye fatigue and head pressure). Cody's ears appear to be fine, however, the neurologist has decided to order more tests for Rhonda (a spinal tap and a third MRI). According to the doctor, Guillain-Barre patients usually recover at a fairly steady pace. Rhonda's recurring symptoms may point to a chronic form of the disease (Guillain-Barre is another name for the acute autoimmune polyradiculoneuropathy. The chronic form is known as chronic inflammatory demyelinating polyneuropathy). Hopefully, the tests will help us learn more.

In the meantime, we're trying to get back into a normal routine with the boys at school. I'll also be teaching classes again this Fall. Fortuantely, Rhonda is able to watch the boys by herself now, so it makes things a bit easier. She is still not driving yet because of her eye troubles. We continue to ask for prayers for healing as well as energy.