Wednesday, December 31, 2008

New Year's Eve

Qavah is having her evening bath. The house is quiet after a long day. She had so much energy today that rather than walking she jumped and hopped everywhere. I was imagining adults losing extra holiday pounds by doing the same. Wouldn't that be fun for a change?

Kathryn and I are packing and getting ready to drive into the Washington, DC area for a wedding this weekend, so naturally we are excited as well. I have had a sense that I am on the verge of an adventure this year, as though my name has been called to win a prize. So, on the eve of this new year, I want to thank the Lord in advance for the adventures He has in store for me. I wish the same for you. Happy New Year!

Monday, December 29, 2008

Eighteen Eggs

Last week I accidentally left a carton of eighteen eggs in the trunk. About five days after buying them, I needed them for a recipe and wondered where they were. They never made their way into the kitchen and I found them in the trunk. Not wanting to take a chance on poisoning anyone, I put them in the refrigerator and told the family that they could chuck them into the woods when they had a chance. The last two pictures on the last post show Paul and Todd with a catapult about to chuck them into the woods. All the guys took turns splatting them on the trees. When some of them hit their mark they really exploded in a gooey mess and we all cheered. It may not seem like a big deal but it was actually a lot of fun.

Today is our thirty-fifth anniversary and I must say it is nice to be married to someone who took my mistake and made it so much fun for everyone including me. That's grace. That is probably the secret to many happy marriages.

Saturday, December 27, 2008

Family Gathering

Yesterday the family started arriving and by dinner time there were eighteen of us here to enjoy time around the table. The Talbott family sang after dinner. It was beautiful. Their harmonizing was sweet and melodious as they sang of the Savior's birth. John and Jacqui from Charlottesville brought the traditional homemade goodies, and their smiling kids. Cousins played computer games, laughed and joked, and just generally had a good time together. Sandra and Joshua joined us because Dan and Julie were out of town town spending Christmas in eighty-degree Florida! We laughed, played games, played the harp, and ate too many sweet things. After dinner the girls all walked to Paul Burton's apartment to watch "Miss Potter" on the big screen while the men stayed at the house to talk about guy stuff.

In the news last week I saw several articles about surviving family gatherings at the holidays. It was interesting to read about all the ways to avoid conflict with relatives and how to get through the day without any harm coming to anyone. I thought about that last night while our family was gathered here. Not because there were any volatile moments but because of the harmony. I'm grateful for it. The uniting factor for our family is the shared faith that we have in God and the belief that He is ever present in every conversation. Yes, there really are people who live like that! We've shared many events over the years as we raised our children. Nearly everyone here had been on a missions trip at some point in their lives, and there was a shared interest in the things happening in the lives of other family members. Many families do not have those things in common. And the icing on the cake was having Kathryn and Qavah feeling well enough to be a part of it all.

This anniversary marks our thirty-five years together. It sounds like a long time but it seems like only yesterday we were waiting for the minister who was fifteen minutes late for our ceremony. There were no cell phones back then and we were beginning to wonder if he had forgotten us. The guests were all seated and we were ready. Then he appeared (having been delayed by a Michigan blizzard) and married us, and we all lived happily ever after with a few arguments along the way.














Thursday, December 25, 2008

Christmas Joy

Paul Burton and I went to a candle-light service at the First Presbyterian Church in downtown Roanoke last night. We got home after midnight, which was close enough to Christmas morning to wake up the girls who had been sleeping for hours. The house was cozy and quiet as Paul Burton made the tea and put some Irish shortbread on the table. The soft lights from the tree made the room twinkle. We began to open gifts and sip our tea. Before long we were watching Qavah through sleepy eyes. She had more energy than any of us and could have played with her new things all night but decided to go to bed when the rest of us headed there.

Once upstairs, Qavah climbed into the rocking chair with me and I told her the story of how we found her for the hundredth time. I told her she was a gift, like a Christmas gift, and that every day I get to play with her. When she fell asleep I put her in bed and crept into Kathryn's room. By the light of her miniature tree we whispered about the evening and the candle-light service until my eyes closed. Kathryn said I snored but I think she meant I whiffled,which sounds much more feminine. We woke up to bright sunshine and mild weather and I thought of family back in Michigan shoveling snow. The day we have planned includes a nap and plenty of rest.

Today, Lord willing, I'll sit in my fluffy chair in the library and re-read all the wonderful Christmas messages again. I'll take care of the needs of the family and probably doze off half a dozen times. Enjoying all these things is God's gift to me. The peace I have, and the faith I've been given to face the future boldly, are all the benefits that come from believing that Messiah was born, and that He came to save and restore my soul.


For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Isaiah 9:6

Tuesday, December 23, 2008

Help for Kathryn

We have had many answers to prayer. Kathryn saw the doctor yesterday and found that while her gums do need surgery after the first of the year, the source of her pain is a very large ulcer along the gum line. Her hematologist wants to draw labs tomorrow to make sure there is no infection associated with the ulcer. The dentist also took a mirror and showed me that there are several more ulcers developing behind her front teeth. He asked whether Kathryn had any trauma over the past few weeks and when I explained her reaction to the drug Boniva, he said that he thought this was all a part of it. While Boniva seemed to be helping to build her bone at first, it has done some major damage this time. It is also responsible for the pain in her jaw. I have a website address to report her reaction to Boniva that one of her other doctors sent to me, and I plan to write that out later today. Her bruising has stopped now, and I'm hoping these ulcers pass just as quickly.

We are looking forward to celebrating Christmas with extended family and hope Kathryn will be feeling better for that. Kathryn's electrolytes are off again and she hasn't been able to get up yet this morning. Paul Burton and I were just discussing the fact that the Boniva is still at work drawing too much calcium from Kathryn's bloodstream. So over the next few months we will just have to give her the right amount of calcium to keep her body better balanced. One thing this drives home to me is the awesome way in which we were created. Everyday we wake up, go to work, eat, and sleep, and most of us never have to think about keeping things in balance. The fact that God has designed us in such a way that many of our bodies function year after year without a glitch is amazing to me. We outlast our automobiles and appliances.

We appreciate your prayers so much and the encouragement you give us. We received many emails with your prayer requests and have prayed for them all. We hope that blesses you back!

Sunday, December 21, 2008

Trying to find Help

The weekend has been a bit of a challenge as Kathryn has faced some painful reminders of the complications of HPS. Last Friday her gums began to bleed. Because of her platelet dysfunction, that was hard to get under control. By Friday night the pain in her jaw prevented her from eating, and by Saturday afternoon she was pretty much miserable.

Kathryn's gums have been receeding for the past year to the point that her roots are now exposed. That was due in part to her medications and bowel absorption problems. But before grafting can be done there is the matter of infection and bleeding to address. I had called around Roanoke looking for an oral surgeon when I noticed the need for more grafts this past summer. But when I explained Kathryn's condition, it seemed the concensus was that she needed someone better qualified.

Yesterday we finally contacted an oral surgeon that had worked on her mouth before we knew Kathryn had HPS. He did return our call this afternoon. But now Kathryn is running a fever and the pain is unmanagable. That surgeon is trying to locate Kathryn's hematologist to discuss what can be done. She needs the help and as things have gotten worse for her throughout the day her adrenal system has taken a hit. I've increased her prednisone and am trying to keep her electrolytes balanced.

Kathryn and I spent several hours praying this afternoon and the focus of her prayers are not for herself. There are so many needs in the lives of our friends right now. Although it is such a blessing to ask for prayer from our blog readers, we understand that there are many others who need our faithful prayers as well. Send us your requests because Kathryn said we will be up tonight.

Thursday, December 18, 2008

Christmas Cards

Paul picks up the mail at the end of his work day and brings it to the house after parking his car for the night. It's almost dark when he arrives home but when he opens the door with a hand full of Christmas greeting cards everything seems to brighten up a bit. I particularly enjoy the cards with family pictures and news of friends I've loved for so long. After devouring the words I put the greeting cards in a basket for the rest of the holiday season. I'll reread them in the days to come, pondering the grace of God in all their lives.

The basket of cards is left out on a table so that when the grown kids are home they can look through the basket as well. They'll pull one out and say something like, "Wow! I remember when they visited ten years ago and..." They also have fond memories of growing up and enjoying our friends. I do treasure the time I get to have with friends, even when it is sitting with my feet up in a comfy chair and reading their newsy letters about the events of their lives this past year.

My grandmother and her friends used to save all their Christmas cards, punch small holes along the edges, and then stitch them together with yarn to make a Christmas basket. I remember sitting with one of those baskets on my lap examining all the different Christmas cards. When I was little I thought the most beautiful cards were the ones with sparkles glittering in the light. But of course the most beautiful cards are the ones signed, "Love..."

Saturday, December 13, 2008

Stink Bugs

With the girls both feeling well today, I thought it was time to decorate for Christmas. We unwrapped the Christmas tree today that was stored away in the barn. It had an offensive odor that I couldn't quite place. Then as the limbs of the tree were straightened out I noticed there were stink bugs hiding on the trunk of the tree. We got wet paper towels and got them off and I wondered if other neighbors have had as much of an invasion of stink bugs this year as we have had. I do have to say that I was a little intrigued by their choice of hiding places because our tree looks very real. The trunk is made from a real tree and holes were drilled into the bark to insert the branches. After the tree was sprayed with room freshener and decorated it looked wonderful. And no one would know our Christmas tree had stink bugs, unless they read this blog!

As we were hauling out the Christmas items this year I thought, "Do we really need to do all these things?" As I placed the greenery, lights, and gingerbread house, in their "spot" I didn't have the enthusiasm as in years past. But when everything was in place Qavah stepped into the room and said, "Oh, Mommy it is so beautiful!" She was so excited and expressive in her praise that I thought, "Enthusiasm or not, I have a new little reason to keep doing this year after year." Stink bugs or not, I'll be keeping the tree.

"Do not store up for yourselves treasure on earth where moth and dust (or stink bugs) doth corrupt, but rather store up for yourselves treasure in heaven..." Matt 6:19

Thursday, December 11, 2008

Moving Forward

As Kathryn explained on her blog tonight, her challenges with the Boniva (bone building drug) will probably mean she won't be taking it again. She is stronger than she was a year ago and I think she will continue to improve with calcium supplements and exercise. I came home and found a message in my email from one of Kathryn's doctors. He had read the blog and did some checking on the side effects of Boniva and sure enough other cases like Kathryn's have been reported. Although many of the drugs Kathryn is on have side effects, they are allowing her to live a good life. There are so many unknowns with HPS but maybe by reporting these simple findings and adverse drug reactions we can help someone else.

Wednesday, December 10, 2008

Troubled Waters

Kathryn told us during dinner last night that there was a high pitched ringing in her ears and that her heart was racing. I immediately blamed it on the sodium in her dinner and thought she would be fine if she consumed water to flush it out of her system. But by nine o'clock she was much worse and unable to communicate. Her muscles were locked and she had difficulty breathing. I prayed for wisdom and sat down to think. It suddenly occurred to me that Kathryn had just had her third treatment of Boniva two days before. That drug pulls calcium from the bloodstream and helps to rebuild bone. I think her bloodstream was not able to supply the right balance for the Boniva so I reached for calcium and vitamin D and gave her magnesium to loosen her muscles. While attempting to correct her electrolytes she began to feel a crushing pain in her joints and I gave her extra prednisone. As all these things began to work in her system I had a feeling that God was guiding my thoughts and helping me. An hour later Kathryn was able to sit up and talk to me but her electrolytes have been off all day today. In spite of that she went to work and took extra medication with her. Tonight she went right to bed but I am noticing her body is now covered in bruises. They are everywhere. I am hoping the hematologist can see her tomorrow because she is feeling exhausted. Her last blood draw was yesterday and it showed very low iron levels as well as low white and red blood cells.

Although the waters seemed troubled during the night, there have been periods of sunshine today. I was able to enjoy playing with Qavah and Annelise early this morning. Qavah also had her transfusion at the hospital today and is feeling much better. She is hanging on to the three pounds she gained this month and the nurses cheered for her. I was so proud of her for holding her little arm out and accepting another transfusion even though she just had one two weeks ago. She's very brave.

I am looking at my normal Christmas "to do" list and have resigned myself to the fact that I'm going to have to let a lot of holiday traditions go this year. But I do so without guilt, knowing we will not put aside the most important thing; the worship of the newborn King, Who grew up sinless, was put to death, raised to life, and now intercedes for me, guiding my mind and hands as I care for my girls. He is worthy to be praised.

Sunday, December 07, 2008

Sunshine and Fine Days

After a couple of gloomy cold days, the sunshine broke through the clouds this morning and the day became a glorious winter Sunday. Paul Burton sang Handel's Messiah again this year at the Jefferson Center. He just arrived home in his tuxedo and looked very festive and happy as he told us that the performance went well. Roanoke offers several family Christmas favorites with the production of Scrooge, The Nutcracker, and Holiday Pops. Colin and Jennifer were able to stroll downtown Friday evening to enjoy the lights and "Dickens of a Christmas" which is a yearly tradition held in downtown Roanoke. The shop windows were decorated for Christmas and there was caroling and horse drawn carriage rides.

Before major holidays I like to totally clean my house. For me, having a clean house is part of the fun of celebrating. When junk mail is gone, and floors are clean enough for babies to crawl on, it's like a fresh air blew through the house. Paul was in Texas on business last week and with Christmas coming I decided to use that time to rent a carpet cleaner. I cleaned eight rooms and the staircase in two days. Kathryn worked right along with me and I was amazed by her strength. She has been gaining strength over the past two months and together we laughed and joked about it being like "old times." It has been awhile since she was able to help out with that kind of housework. Tonight all the furniture is back in place and it's beginning to look a lot like Christmas.

We are so rich in blessings. Qavah is legally ours, her health has improved greatly, and Kathryn is able to do so many things that she has not been able to do in two years. There is only one explanation for this, and the reason we celebrate Christmas; Emmanuel, (God with us).

Tuesday, December 02, 2008

Qavah's Medical World

My neighbor Kim brought six cases of Pedia-Sure over for Qavah tonight. She had extras. Qavah drinks them like milk shakes and it adds seven hundred calories to her diet per day. She has gained three pounds since November 12th and has managed to keep them all! I can hardly wait until the GI doctor sees her next week. She looks so much better than the last time he saw her. If you've had a child who was not thriving and suddenly things get turned around, you know what I mean when I say every ounce is worthy of a "hallelujah!" shout. I am also fortunate that Qavah takes her bitter pancreas medication faithfully without a fuss. She got it out of the refrigerator tonight and shook it herself. She said, "Time for my nasty medicine!" It is another gift to us that she takes all of these things in stride. Children adjust to things so quickly.

Another thing I find endearing is that once Qavah gets to know some of our guests, she will check their arm veins to find the best ones for drawing labs. This is all so much a part of her world she thinks nothing about rolling up a sleeve to check for a plump vein. In spite of the fact that her first five years have been wrapped up in the medical world, we are praying that she will one day be free to live her life without transfusions. She's old enough now to remember these tough times, and wise enough to know that when a cure comes, it will change her life. "Bring it on, Lord!"

Monday, December 01, 2008

St. Andrews


We were all able to attend Lessons and Carols at St. Andrews church last evening. We sat on the second row together and I felt such a great rush of gratitude for the good health we were all enjoying. The fact that we could all be there listening to such an accomplished choir in the beauty of St. Andrews sanctuary, was a miracle to me. Every day is a gift.

Yesterday was a wintry day here in Virginia. The wind and rain held steady most of the day and it was the kind of cold rain you can feel in your bones. Seated in the warmth of the sanctuary of St. Andrews, surrounded by people who had come to enjoy the celebration of the birth of Christ, we felt the warmth of His presence. For his December first meditation, Charles Spurgeon wrote, "How we prize the fire just now! how pleasant is its cheerful glow! Let us in the same manner prize our Lord, who is the constant source of warmth and comfort in every time of trouble. Let us draw nigh to Him, and in Him find joy and peace in believing."

Thursday, November 27, 2008

Kids of all Ages

The "family" dinner routine has changed for us. Most of the time Paul Burton prepares something for himself at odd hours of the day since he works twelve hour shifts. Although he lives on our property we don't see him very much during the work week. Today he worked at the hospital all day and took sweet potatoes and cranberries with him for the OR staff Thanksgiving lunch. He has called home three times today just to find out what we were up to. It was a slow day at the hospital. There were very few surgeries and only a couple of emergencies, so his day was rather uneventful.

Kathryn's Methotrexate treatment was today, so she didn't have an appetite. She took it easy and worked on laundry. Paul and I had various projects to finish. That left Qavah to fly around the house wearing her princess costume waving her magic wand. After her transfusion yesterday she had more energy than the rest of us put together.

When we do get to sit down together for a meal it is a lot of fun to listen to the table conversation now that we've thrown a five year old into the mix. Recently we ate at the Chinese restaurant and at the end of the meal the waitress brought the traditional fortune cookie. Qavah loves to break her own cookie and then we read her fortune aloud for her. That gives her a thrill. Then Paul Burton read his and the conversation went like this:

Paul Burton: (reading his fortune) "You will receive words of wisdom from a child." Then he asked, "Qavah, do you have any sage advice for me?"

Qavah: "What?"

Paul Burton: "I asked if you had any sage advice for me."

Qavah: (With a very serious look) "No I don't, I keep all my toys upstairs."

One thing is true about kids of any age; they provide us with entertainment.

Monday, November 24, 2008

Thanksgiving

The pastor spoke of gratitude yesterday. We watched a video at the close of the service which made me grateful that I am able to embrace and live in the love God has for me. The Pastor said, "If the Fourth of July is Independence Day, Thanksgiving is Dependence Day." It is a day set aside to reflect on the fact we are dependent on Him and He has been faithful to supply all of our needs. God bless your Thanksgiving!


Wednesday, November 19, 2008

Horton Hears a Who?

Qavah has danced and played today
A perfect day in every way.
The sky was blue
The colors true
And we had so much work to do!

The kitchen is clean,
Dinner is done,
I'm going to Wal-Mart with Kathryn for fun,
Qavah and I have been reading Seuss
Horton the Who and Seuss on the Loose.

Of sing-song rhyming I need a break,
Everything I do can be rhymed of late!

Tuesday, November 18, 2008

Accomplishments

Thank you for your encouraging comments on the previous post. Sandy's prayer is a good one for all of us and I must say her prayer for me was answered in a big way. A strong dose of courage in the morning accomplished many things!

After waiting around yesterday for all the return phone calls, by the end of the day I heard back from everyone I left messages with but for two doctors. Insurance matters were settled, appointments were made, tests were ordered, and my car even got to the shop for a transmission overhaul. Things got done!

"Prayer changes things" is not just a trite expression. I wonder how many things that happened yesterday were the result of answered prayer from years past, also. Yesterday's successes may have been set in motion many years ago when I fell asleep at night to the sound of my grandmother praying over me. I'm so grateful that He inclines His ear to us in every circumstance. He heard my cry for courage and answered.

Sunday, November 16, 2008

Breakfast with Kim

Late Friday night an email came in from my neighbor, Kim. I've mentioned her before as the proud mother of fourteen children. After emailing a couple of times back and forth we decided to meet for breakfast early Saturday morning at the nearby Denny's. We left our phones on at the restaurant because Kim has to keep tabs on the night shift nurse leaving the house and the day shift nurse coming to help her care for her special needs children. I left my phone on so Paul could call me with questions about Qavah's morning medications. With one ear to our phones we relaxed into a conversation that lifted my spirit so high I decided to blog about it. Kim gave me a pep talk.

I explained to Kim that no sooner did we arrive home from the best medical appointment we have ever had for Qavah, when a series of discouraging events started pounding in like murky ocean waves. What had promised to be a simple series of testing became complicated by a disagreement between Qavah's doctors, and questions about moving forward with treatment. As I was telling this to Kim and looking to Monday morning when I am "going to the mat" for Qavah, I found myself exhausted and faint-hearted. Kim talked about her experiences and by God's grace I was poised for a learning experience. As she described the resistance she has had with the medical field at times over the care of her children she said, " Dawn, courage will keep you from being swallowed up by fear." I thought that was so profound that I wrote it on the back of my shopping receipt. She suggested that I not only pray for wisdom, but for courage. It was such a simple concept that my courage rose as we finished our third cup of coffee.

Remembering to have courage at the right time is the key. In one of the books from the Narnia series written by C.S. Lewis, Aslan gave the children three things to remember at the beginning of their journey. He told them they must repeat those things everyday or they would forget their objectives. I arrogantly thought, "just for fun I am going to memorize these myself." It wasn't long before I was caught up in the adventure of the story and in a riveting moment one of the children asked, "Oh, what was it Aslan told us to remember at times like these?" I set the book down and try as I might, I found I had forgotten them also. Isn't that like life? I was so caught up in the challenge of Qavah's health care and my own fears that I forgot that the power I need for this task is already within me.

On Monday morning I'm trading my fear for courage. It may rear its ugly head a time or two but through Christ, "Who did not give me a spirit of fear but of love, power, and a sound mind," I will proceed. As perfect love casts out all fear, my love for Qavah will keep me fighting this fight. I choose to yield to courage. I just sent myself an email that I will open first thing tomorrow. It says, "Dawn, you can do all things through Christ Who strengthens you." And the heading of my email reads, "Courage!"

Thursday, November 13, 2008

Encouraged

We are grateful for your prayers. God has been faithful. We visited Wake Forest Baptist University Hospital yesterday with Qavah. The doctor we met with is a specialist in rare blood disorders and was very interested in Qavah. Her story touched Dr. Sabio's heart in a big way. We talked with him for about half an hour in the morning. Then he invited us to come back after lunch and spent most of the afternoon with us. Please join us in a prayer of gratitude for two doctors actually; Drs. McMullen and Sabio.

As a result of the meeting, we have several things to take care of in the form of lab testing. Some of Qavah's blood work will be sent to the University of Toronto. There will be more genetic testing also. That can be done by shipping her blood so we will have no need to travel. Doctor Sabio told us that in the event the testing still does not produce a diagnosis, he will not just "sit on his hands." By expressing that, we knew that he was willing to try drug therapies in an effort to control this disease. And he told us he would. Some of it will be research since this condition is so rare. But we have believed all along that God can and will work through a medication to bring healing to Qavah as He has done so with Kathryn.

My mind plays a scene almost every day. I picture Qavah starting a drug therapy and I take her for routine monthly labs. Then I come home and wait by the phone. The phone rings and on the other end I hear Qavah's hematologist exclaim, "The blood test is normal; no need for a transfusion this month!" What else is there left for me to do at that point than to fall on my knees and worship? That's my dream and it is very real to me.

Tuesday, November 11, 2008

Preparing for the Trip

I am packing today for our trip. The family pet goes to the groomer in a few hours for her overnight stay and beauty treatment. Paul is going with us so I'm picking him up from work this afternoon and we'll head to North Carolina together. Qavah is looking forward to the trip because she likes to travel. I picked out some DVD's at the library yesterday that will entertain her while we travel. The weather is clear and sunny; just right for a travel day.

Your prayers go with us and bless us. I'll write about the visit when I return.

Sunday, November 09, 2008

An "Ear-Full" From Kathryn

Yesterday, my internet was down, so that is why I didn't post. I've had a busy and fun weekend. Today, we had my Grandparents, Whitney, Colin, Jennifer, and Uncle Rick (from Portland, Oregon) here for an afternoon of music, soup, and talking together. The weather was crisp again, a typical November day.

I enjoyed watching Qavah, Annelise, and Nehemiah partaking in the family festivities in their own way. Qavah and Annelise danced to the lively music, while Nehemiah laid contently on Great-Grandma's lap, showing his approval with serious stares and joyful babbling. Tonight, I plan to hit the pillow with a smile on my face.

Thank you Lord for the ability to hear the sounds of music that filled our home today. I praise You as the Creator for the talents You have given the Campbell family. May future generations use their gifts to Your honor and glory. Amen.





Saturday, November 08, 2008

Sunday Is Coming!

We woke up this morning with our "to do" lists at hand. Everybody has their busy work and agenda for the day. Today is the day the men are around to help with the bigger tasks. There is a laundry pile, and sink full of dishes. We are all working toward getting things done with one eye on tomorrow. Oh blessed day of rest. For all of you out there with a list of your own today; God bless the work of your hands. Sabbath rest is within sight. It is a gift to all of us from our God Who knows our human frailties and need for rest.

"How precious to me are your thoughts, O God! How vast is the sum of them!" -Psalm 139:17

Thursday, November 06, 2008

Happy Birthday, Paul

We celebrated Paul's birthday tonight. He had a good meal, good cake, and a good time bouncing children on his knee. Aging has its advantages and one of them is the "seniors" discount. Yes!

Wednesday, November 05, 2008

Daily Plans

This morning the telephone woke me up early. A voice on the other end of the line began asking me all of the typical questions on a patient "intake" form and soon I was giving Qavah's insurance numbers and detailed information to another hospital. Hope is rising in my heart and I am very excited about the trip Qavah and I will take next week. She knows something is up, and is begining to talk about it. Until then we have videos to take back to the library, grocery shopping, and Daddy's birthday celebration tomorrow night. While I am carrying on with normal daily tasks, my heart is in constant prayer that the Lord will bring healing to Qavah.

A medical update might help those who follow this blog. Qavah has had a malabsorption problem and insufficient pancreas function since we got her. She had a feeding tube until the age of three and a half, when she pulled it out herself. Rather than surgically replacing it, her doctor at that time decided to see if she could eat on her own. She has been eating on her own for a year and a half now but is not growing very well. Her recent labs showed vitamin deficiencies and very low red and white cell counts. Both her hematologist and GI doctors have strongly suggested putting in a new port and feeding tube. So this is a critical time for Qavah. We are asking God to guide and direct the doctors who have not tried any drug therapies for this problem that has plagued Qavah since birth. We believe God is going to use a certain drug to bring about a significant change in Qavah's condition and have been fasting and praying for a particular drug that may help. Our faith is being tested, and at times when Qavah's doctors call with discouraging test result, we have to hold on by faith.

In the meantime, Qavah was put on a drug, Ursodial, for her pancreas problems and after five days we are seeing her appetite pick up. She has been drinking Ensure and is feeling stronger. Now we need to pray that God will move on her behalf to bring this Red Cell Aplasia under control. That is what I hope will happen as a result of our trip next week. We are asking for a miracle.

Monday, November 03, 2008

Peaceful Day

It was a quiet day for us. The afternoon was spent in the rocking chair where Qavah and I listened to music for almost two hours. She was completely content to be on my lap wrapped in her blanket having her hands massaged with an antibiotic gel. The doctor who saw her hands on Friday did a double take. Her hands looked as though the skin had been burned off and they were cracked and peeling. At first he just stared. Then he started talking rapid-fire about zinc deficiency and how he had seen it once before. After four days of taking zinc, Qavah's hands are rapidly healing. They have new skin forming that is as soft as baby skin. It is thrilling to watch how fast healing is taking place.

I'm very thankful that Qavah likes to be held and rocked. Although I did spot a few dust balls today, I have reached the age that I can say, "nothing in my day is more important than rocking Qavah," and mean it!

Saturday, November 01, 2008

A Change We Can Count On

The girls have had some health challenges this week and continue to rely on medicine, God, and answered prayer. God has been faithful to supply their needs. Kathryn had a very bad night this past Wednesday. She began to bleed internally again and I spent most of the night trying to keep her electrolytes balanced. A quick Remicade treatment brought Kathryn's symptoms under control by Thursday afternoon, and she was back to work on Friday. Qavah has skin peeling off her little hands right down through several layers. They are sore and we are trying everything to help them heal. However, at her doctor's appointment this week I was told that her white cell count was not high enough to fight infection. With her hands cracked and open I am having to be extra diligent to keep them clean and covered with antibiotics.

Every day I live with two girls who struggle. Some days Qavah is so weak she doesn't have the strength to carry her own body up and down the stairs. In spite of everything, our girls continue to teach us about joy in the face of adversity. Kathryn and Qavah both have a way of enjoying the simple pleasures of this life far beyond many able-bodied people. During the night of her pain, Kathryn and I spent hours praying for this country and the election. By God's grace she is able to see beyond herself, even when her body is screaming for attention. The girls have learned to live the good days with a joyful heart. We learn from them what it means "to serve the Lord with gladness."

I've put off writing about the presidential election knowing that this site is dedicated to those who follow it for information concerning Qavah and Kathryn. But my heart tells me that it is time. We have all heard major criticism about our country on all fronts. We have heard about the health care crisis, Iraq crisis, economic crisis, and every other crisis. I find it interesting that many people in this country look to one man to solve the world's problems. They look to one man to blame for it all and think that all we need is for someone else to step up front and center who proclaims he can fix it all. They want someone who looks "presidential." They want him to fix all the "crises" and make us all happier to be Americans.

For two years we have been a family in crisis. For those who have followed the blog, I know you will agree that we have had some major challenges. If we had relied only on our own wisdom, medicine, or human doctors, our hearts would have been drowning with a feeling of helplessness. But through prayer and Bible study we were able to go to God with every challenge, cry out to Him, and then step back and watch Him work. Our family crisis is no different than our national crisis. Therefore, I'm not looking for a man to step into the picture to fix anything. I am looking for the mighty power of God. He changes the seasons, He changes lives; why would He not be interested in changing the broken things in our society?

In this election Sarah Palin has been the most vocal about her faith. She has said herself, "The outcome of this election is in God's hands." I believe she has a healthy world view that acknowledges the broken things in our society but has not made grand sweeping statements about how everything will be fixed and everything will be better if she wins. I am voting McCain/Palin not because I think they can fix everything, but because they both have held to their belief that life is precious and must be protected right down to the tiniest human being. They may not fix the culture, the economy, or the problems in the Middle East, but they have both shown by their actions and their voting record that human rights belong to the smallest and most helpless members of our society.

But the real change is the one that is to come. The change we are all looking for is the one we will have one day if we have placed our faith and trust in the work of Christ on Calvary. His death for our sin made it possible for us to enter into the Kingdom we all long for. The Kingdom to come will be that place where justice prevails. It will be a place of peace and safety that eludes us here on earth. In Heaven I will see my girls run and jump in freedom with their new bodies. I will see "crisis" give way to eternal joys and peace. If our election could change just one thing, I would hope it would change the way we think about God. He is what we are looking for. "Blessed is the nation whose God is the Lord."

Monday, October 27, 2008

Transfusion Time

Qavah woke up Sunday morning and crawled up on my lap. I rocked her wrapped in her blanket and she said, "I want to go get some blood from Dr. Meck." I am amazed by the way she is beginning to understand her own body. Today her labs showed a need for a transfusion so she was given her Red Cross arm band and a ten o'clock appointment to get a transfusion in the morning. Her CBC was 6.5 today.

We have had a sudden opportunity to take Qavah to a hematologist in another state. The appointment was made through a friend of mine, and it all transpired in such a remarkable way that we are all in awe. She will see one of the best hematologists in the world next month. I can only shake my head with wonder and thank God that He hears and answers prayer. I am not going to give names and location just yet, but our every need has been met before we even set out on our journey. This upcoming appointment is a gift from the Lord. There is no other way to explain how things fell into place. Our prayer is that God will inspire him to do something for Qavah.

Sunday, October 26, 2008

The Genius of God

Kathryn and I have had an interesting weekend. I took her to her Alumni weekend at Mary Baldwin College. The event featured Dr. Francis Collins, famous for his scientific discoveries and mapping DNA. We had already met him two years ago in Washington DC, but this weekend we were able to talk awhile with him. Paul Burton also took his viola to a musical gathering at The Oaks, where the Collins family treasures fill an 1840's southern mansion. Paul Burton was able to play along with the Collins brothers while Kathryn wandered around the mansion taking pictures.

The Collins' home schooled their children including their son Francis, and taught them music and drama. Their contribution to Mary Baldwin College is significant. Saturday afternoon we listened to a lecture on how science is "proving" the theory of evolution. Scientists say they now know that the DNA of chimpanzees is so closely related to human DNA, that there was once a connection until a mutated gene caused the evolution of man. There were many affirmative responses in the audience. It sounds reasonable. But Kathryn and I grinned, knowing our God works outside the realm of reason and science, and He has no theories. He created DNA, and He knows not only what it is and how it works, but why it is the way it is.

While listening to the presentation I recalled the later chapters in Job where God spoke to prideful Job and said, "Were you there when I formed the earth, Job? Were you there when I set boundaries for the waters of the oceans?" After a confrontation with God, and experiencing His great power and wisdom, Job humbled himself before the Lord and repented of his pride.

Kathryn and I don't consider ourselves very learned. Neither of us understand math except to balance our check books. But we do have faith. We came home and read Genesis 1:7 which states," The Lord God formed the man from the dust of the earth and breathed into his nostrils the breath of life, and the man became a living being." Won't it be fun to get to Heaven and find out the "rest of the story" from the One Who made us? And when He is telling it, I'm sure Kathryn will not be wandering around the mansion taking pictures.

Monday, October 20, 2008

HGTV

I admit to being influenced by television. I have seen those shows on HGTV that "make-over" an entire apartment in two days. I've observed their formula for getting things done. Sorting, organizing, and changing the decor, achieves the desired results. We are doing that with the apartment on our property and it will soon be transformed. I guess I like make-overs because I feel like they are a reflection of real life.

How many times have we approached a problem differently than we would have ten years ago? How many times have we been surprised by how we handle a situation with more patience and thoughtfulness as we have gotten older? An Unseen Hand has been carving away immaturity with so much tenderness and mercy that the transformation might be missed. Then life's pressures tests us, and we discover we have changed. That has occured in my life through the transforming power of the Holy Spirit, and the wisdom that comes from knowing God. Like the apartment, I'm being transformed.

Many of the things we have done in the apartment reflect a transformation in Paul Burton as well. When he first moved into the apartment he was just beginning college, and his apartment was a hang-out for playing video games, and hosting youth group activities. Back then it didn't matter to him if a broomstick was used as a sword and went through the ceiling. The holes have been patched and painted. This afternoon, I went through the little cedar chest in the apartment and sorted all the favorite stuffed animals that have been kept all of these years. I found Pound Puppies, Lamb Chop, and The Cat in the Hat. The memories swooped in like a flock of Chickadees. They were cheerful, light, and fleeting, as I sorted quickly in order to stay on task. The stuffed animals belonged to children who dragged them around the house long ago, and those days are gone. I put away a few stuffed toys for the next generation. Qavah snatched up Curious George, and the rest are headed to the Goodwill Thrift Store. Paul Burton is parting with his 30-shot Nerf machine gun, and has made room for his expresso maker instead.

Through the transforming power of God, when we are called upon to change, grow, and mature, the end result is like that of the apartment; less clutter, more clarity, and a fresh way of looking at things.

Friday, October 17, 2008

Thank You For Those Prayers!

I watch Kathryn leave for work in the morning and I can hardly believe my eyes. She looks beautiful and is getting stronger all the time. I credit that to faith and answered prayers. I have longed for these days. Almost every evening Kathryn gets home with exciting news about her day, and is able to eat what I fix for dinner. Even on the days she takes Methotrexate, she is able to work through the nausea. Your faith, your prayers, and our Great God brought us to this place.

I am trying so hard not to be overwhelmed with frustration over Qavah's condition lately. We have seen how God worked in medical challenges with Kathryn, and it should keep me in perfect peace! Yet I find myself searching the internet looking for research, testing, diagnosis, and therapies, that could possibly shed some light on Qavah's medical problems. She has been out of breath and has had very low energy the past two days yet she is still two weeks away from her next transfusion. I am asking, seeking, and knocking on doors. I'm like the woman in the Bible looking for her lost coin. We finally received a report by mail today detailing what the specialist at UVA had to say. In that meeting we agreed that she needs a bone marrow biopsy and genetic testing again, since it has been almost five years since that was done and her condition has remained unchanged. But these rare diseases are challenging for doctors because they don't know how to begin treating the symptoms. I hope I am praying big enough when I ask God to pour out His wisdom on Qavah's doctors. I have a feeling we have not yet met the doctor that will be the instrument of blessing to Qavah. But my eyes are searching the horizon for the one the Lord will supply.

Tuesday, October 14, 2008

Normal and Loving It

Before I left the house for my power walk last night, I laid out my long dress and jewelry because upon my return I had just enough time to get ready for my date. Last night was opening night for the new season with the Roanoke Symphony. I quickly dressed, noticed Paul dressed in a dashing suit and tie, and we swiftly headed out of the house blowing kisses to the girls. I turned around and looked at Kathryn and joyfully shouted, "NORMAL!" She grinned at me and said, "Don't hurry home, everything will be fine." It has been a long time since we have been able to enjoy an evening out like that. We smiled and held hands. The music was beautiful and flowed through the auditorium like a balmy breeze. I love these normal times. I am enjoying them fully. We stopped on the way home to shop in our symphony clothes and that was fun as well. I found a little bouquet of flowers for Kathryn's room to thank her for babysitting, and all too soon the evening was over. I woke up this morning feeling so blessed. These are the times of refreshing!

Sunday, October 12, 2008

The Weekend

The girls have had a very good weekend so far. It is amazing to see Kathryn doing things she used to do and enjoying herself. On Friday she went shopping with a friend and to a movie. Tonight she went to the Civic Center to hear a concert with Colin and Jennifer. And tomorrow she is planning to go to her Sunday Bible study. It is miraculous to us. Just to see her having so many good days in a row is rare, and so wonderful.

While Kathryn is on her feet and having fun, Paul and I are trying to get some projects finished before winter. The garage hasn't been cleaned in two years, and we have had to let a lot of household things go in order to take care of the girls and their needs. Now that we have this window of opportunity we hardly know where to start, but it is giving us a great appreciation for the good days of health we used to take for granted.

We're looking forward to a restful Sabbath Day. The weather here in Virginia is perfect in the daytime and the temperature at night could not be better for a deep restful sleep without the sound of the air conditioner or furnace turning on. I love the One Who gives me these simple pleasures. Enjoy your day.

Thursday, October 09, 2008

Do Other People Dream Like This?

I was washing dishes after dinner tonight thinking about the invitation that arrived in today's mail. The paper was thick and beautiful with the state seal of Louisiana stamped in gold. The invitation is to our family, to attend the tenth annual Adoption Reception Celebration at the Governor's Mansion. I thought about what it would be like to tell Bobby Jindal what a great job he is doing with the state of Louisiana, and how thankful we are to the state workers who connected us to Qavah. While I dream that the event would be wonderful to attend, the reality is that a two-day drive with the girls' unpredictable health wouldn't be wise.

Continuing my thoughts on invitations, I accepted an invitation years ago to consider asking Christ to be my Savior. By faith, I took it. I asked Jesus to be my Savior, and repented of the sins I knowingly committed that kept me from having a relationship with God. Certainly having accepted the invitation to spend eternity in Heaven will always be the highlight of my life. As grand as it may be, an invitation to the Governor's Mansion just isn't the same. In Heaven, as I talk to Jesus and see Him face to face, I can ask, "Wasn't that amazing when Qavah, who had never met us before, wrapped her arms around our neck and said, "Come on Daddy and Mommy, let's go home!" I can imagine Him beaming with joy for all of us. I can talk to Him about the day we first held all of our children and I'll want to tell Him how much fun it was to watch their personalities emerge. He is the only One Who can say, "Yes! I was there for every change!" He can agree with me that dimpled fingers of toddlers are replaced by knuckles so quietly that one day we look at our children and wonder when the dimples disappeared!

The dishes are done now, my daydreaming is over, and after this post I'll turn out the light in the kitchen. I wonder if other women think these thoughts while doing dishes. It certainly adds interest to an otherwise routine job.

Tuesday, October 07, 2008

Changing Seasons

Having once lived in Michigan, the thing I like most about Virginia is the long season of warm weather. The warmth starts thawing our bones in late March. Then it isn't until mid-October that a chill returns in the evening air. The wind tonight smells like the crisp northern air of Michigan that I remember so well from high school football games. It's baked apple season, and time to pull out the sweaters. As the seasons change, I know we are going to have many opportunities to see God's goodness on cold winter days. But I'm holding out for a few more warm days to walk barefoot in the grass.


Sunday, October 05, 2008

The Lessons of Job

We attended church with Colin and Jennifer this morning. The morning message came from the very last verses of Job. The Pastor had been preaching from the book of Job for awhile, and today was the conclusion of that study. Of interest to me was how the Lord used those last few verses to speak to Job's friends; the friends who came to give Job their interpretation of what God was doing in his life. After Job suffered with every heartache known to man including the loss of his family, fortune, and a head-to-toe case of boils, the Lord took the last few moments of the whole story to speak to Job's friends.

So often the things we suffer are not exclusively to teach us. The lessons are often used to teach others observing our lives. The Lord concluded His message to Job's friends by basically telling them that while they found fault with Job and tried to reason with him with their limited wisdom, it was Job who understood that He was God. He reminded them that He alone had the answers to the tough questions. He praised Job for trusting Him during the darkest days. Job humbled himself before God almighty and said, "I have heard about you with my ear, but now mine eye hath seen thee." Job 42:4

I'm sure many who suffer from rare diseases and those with no cure can relate to Job's suffering. We just read the news that another young woman has died from the complications of HPS. She had just turned twenty-six the day before she died. My heart goes out to all of those who are waiting and hoping for a cure as they see their friends' lives come to an abrupt end at such a young age. Before Kathryn's diagnosis we did not even know this syndrome existed. It not only exists but it is ruthless. We would be untruthful if we did not admit that along with that news we quietly wonder how much more time we will have together here on this earth. I asked God to comfort those in the HPS community who mourn another death. I've asked Him to draw near to those with this diagnosis as they wonder how many days, weeks, or years, they have left. There are no easy answers like the one's Job's friends offered, and for which they were rebuked and told to repent. May God's love be very real to those who mourn tonight.

Friday, October 03, 2008

Considering the Facts

We are considering the facts as they appear for Qavah. Her health care providers have been pushing a diagnosis of Diamond Blankfan Anemia. However not all of her lab results are consistent with that diagnosis. Where we are having a challenge is finding a group of doctors willing to look at her symptoms for more clues. We don't believe the diagnosis of Diamond Blackfan Anemia is correct.

We are in the very same place we were with Kathryn eighteen months ago. If lab results don't support a theory, medicines that could bring healing are withheld. We ask that those of you who want to make this a matter of prayer would pray for a doctor who will consider all we have learned about Qavah and use a drug to suppress her immune system. This is not something that is unheard of by any means. It could very well stop the destruction of her red cells. We just haven't found the right doctor willing to travel this road with us. Kathryn's care changed dramatically with the use of Methotrexate. But we saw eight doctors and tried everything else before someone was willing to try that drug.

Wednesday morning Qavah came downstairs from her bedroom after a good night's sleep. She laid down on the kitchen floor near where I was working and couldn't get up. She looked like a little colt struggling to get her feet under her. I picked her up, dressed her, and took her for labs. I discovered that after just four weeks her CPC was 6. We stayed at the hospital for an immediate transfusion and she is doing better, but her last three transfusions have been necessary at four weeks. That's a lot of transfusions and we are asking everyone to pray that this cycle will be broken somehow. We know God has a plan for Qavah. She asks Paul to pray for her before she goes to sleep at night and lately she has been asking, "Can you pray that Jesus will make me better?" Her faith is being exercised even at her young age and limited knowledge of what He really can do. Watching Kathryn come back to life my prayer is, "Would you do it again for Qavah, Lord?"

Tuesday, September 30, 2008

Rainbows in the Sky

We drove home a bit discouraged from our appointment in Charlottesville. I thought I was prepared to accept that the doctor there might not be much help. He suggested a couple of things that might help Qavah in the long run, but nothing that might arrest this disease. Paul and I were in a reflective mood on the drive home as we mulled over the hour-long visit with the doctor.

Qavah had a blast today. She had a little picnic box of goodies to eat in the car. She also had our complete attention, watched movies to and from Charlottesville on her little DVD player, and for an added bonus, she was able to see Grandma and Granddaddy on the way home. She hardly noticed that we were making the trip for health reasons. Her heart was joyful all day.

As we were nearing home this evening, we had just gotten off the interstate, and painted in the late afternoon sky were two huge and distinct rainbows side by side. We have been teaching Qavah about God's promises and even bought her a little rainbow light for her bedroom, but today she saw the marvelous handiwork of God. They were the real deal. She was in awe. Qavah has learned that when there is a rainbow God takes notice and remembers His promises. He has made some promises to His children, and today He reminded me with a double rainbow that she is in the palm of His hand. "Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:16

Monday, September 29, 2008

Qavah's Turn

Kathryn, after two years, has finally reached a place with the right medications that she is now experiencing relief from many of the problems she was faced with at the time of the HPS diagnosis. It was a long and very hard road. Many times she had to wait for doctors to observe her condition for weeks and months before they were willing to prescribe things that finally worked for her. That is the nature of medical treatments for rare diseases.

Tomorrow we will be taking Qavah to the hospital in Charlottesville knowing that we may have to come home without many answers, but it is still worth pushing and trying every door. We believe one will open when the time is right. I would like to think that day has arrived. I've explained the visit with the doctor tomorrow and that she will most likely have to give them some of her blood to examine. Although she heard that part and considered it, she has talked of nothing else but taking a trip to Charlottesville with Mommy AND Daddy! I'm glad she sees this as a big treat. Cheerfulness seems to be the theme of her life.

Sunday, September 28, 2008

Sunday Sermons

This morning Kathryn went to hear a missionary from India speak on the subject of teaching new believers how to grow in their knowledge of the Bible and to help them get involved in a local church. We went to a different church and the sermon we heard emphasized the need to be engaged in the world enough to share the Gospel message, because it brings hope and eternal salvation to those who believe. Paul Burton went to a church service in Blacksburg and told us that the Sunday School discussion was about methods of evangelism. I thought it interesting that three different churches; three different denominations, had a similar message today. Perhaps it is one that Christian circles need to hear. It was a reminder that there are still many who don't have peace of mind concerning life after death.

The sermon we heard today was also a good reminder that frightened, lost, and angry people are watching Christians with the question, "Is Christianity anything I should care about pursuing?" The pastor began with the story of a police officer coming upon the scene of an accident. A woman had failed to stop at a red light because she was on her cell phone and applying her lipstick. She hadn't noticed the light changed to red and rammed the car in front of her. The officer observed her obscene finger gestures through the sunroof and heard her swearing when he arrived. He asked her to step out of the car, handcuffed her, and put her in the squad car. Later at the jailhouse she was released with an apology. "I'm very sorry," he said, "But when I saw and heard your rantings and observed all the Christian stickers on the bumper, I assumed you had stolen that car."

Father, when Monday morning begins, and Christians face a new week of challenges, help us all to remember that You are the Sovereign Lord and that others are watching to see how Your children behave under pressure. Grant us grace to respond with patience. Amen

Tuesday, September 23, 2008

From the Kitchen

I took Qavah to her GI doctor again today. She has not gained weight over the past few months and his report today was not very positive. I am not looking to the doctors for the help she needs. Her disease is so rare there are no known cases. Most of her doctors don't know what to do. Our hope is in the Lord who made her. He knows when the time is right to move on her behalf. We believe she is going to improve somehow. We have seen miracles in Kathryn's life and I am expecting one for Qavah.

Fernando and Rosa were not kidding when they arrived and said, "We will cook for you." This evening we sat down to a wonderful meal made of beef and several vegetables cooked in a savory sauce. They said it was a typical Spanish dinner for the winter because it is a wholesome and comforting meal. I would say it resembled an American stew. Tomorrow they are making a special chicken dish and found all the ingredients at the new Kroger nearby. They have made two trips to the grocery store because Rosa loves it. I'm not sure whether they have taken their pictures in Kroger, but they have found it a wonderful American experience.

Kathryn is doing very well this week. She is enjoying her job and it has been a source of joy for her. It is also fun to come home and find Fernando and Rosa here making dinner. Our hearts are at peace and I am grateful to find so much joy in the "normal" things.

Monday, September 22, 2008

Winning Days

I went into Kathryn's room yesterday morning and her face and hands were quite swollen. She was feeling strange and had a terrible sinus headache. We talked about what might have caused the sudden change and traced her steps back to the evening before when she ate ham at a special dinner she attended. Too much table salt affects her the same way as saline in her IV. The ham sent her into an all-day sleep-in with several glasses of water between naps to flush out her system. By evening she was better. Things change quickly with her health, but now that she knows country ham is off her list she can avoid another setback by not eating it. Her list of food sensitivities has grown considerably. However, she still enjoys being at the table with everyone and I try to cook the foods she can tolerate.

Qavah and I have had a good day together. She waited at the Social Security Office with me for over an hour. We took a number when we arrived and her number was twenty-nine. She waited patiently until a woman called out her number and from the squeal that burst forth from her, one would think she was called to be a game-show contestant. She jumped up and down waving her number. I think that was the most excitement the Social Security Office had seen for awhile and it made several people laugh.

Friday, September 19, 2008

Upcoming Events

Many of our friends here in the area may remember our foreign exchange student, Fernando, from Spain. We had him for several summers which gave him a chance to further his education and improve his English skills. We chose to take in Fernando because his documents stated that he played the piano and enjoyed classical music. From that decision we have all made very happy memories with Fernando. My job was to take him shopping for gifts to take home to his Mom and sister. He hated shopping! Well, tonight I heard Fernando's voice on the phone calling from New York. He is back in America. He is now in his second year of medical school and is coming for a visit next week.

We have not seen Fernando for a few years. On this trip, he brought with him a young lady. "You will love her," he said, in a tone that really said, "I love her." She is a surgical medical student and hopes to observe an American operating room during her stay here. Fernando is pursuing a residency at Duke University Hospital next year. It seems like yesterday that he was sixteen and ready to take on the world. Now he is twenty-six and ready to take his place in the world. The time has passed so quickly.

We are hoping for a good week of health for Kathryn and Qavah during the visit with Fernando and Rosa next week. We have a good bit of catching up to do and not a lot of time. We want to show Rosa the view from the Blue Ridge Parkway, the market downtown, and all the reasons why Fernando loved coming back to the United States each year. This evening he called on his new iPhone, purchased from a store in New York; a great little souvenir! I'll post pictures of the visit next week and in them, Lord willing, we'll see Kathryn and Qavah smiling joyfully.

Table Talk

Tonight we had a lovely dinner and the whole family could be here around the table. The funny things Colin and Paul Burton would say meant more to them than the rest of us because they shared a room and an apartment until Colin got married. They were reliving some silliness from their childhood. They would say something in a funny voice and crack themselves up with laughter. Qavah giggled whenever they giggled. Annelise sat across the table from Qavah and they began to giggle together. Around the table there was freedom from our daily cares and times of good laughter. This doesn't happen very often due to our busy schedules, so it was a lot of fun to watch tonight. Kathryn ate a regular dinner with us, and appreciated everything.

After dinner, Annelise and Qavah took the toy grocery cart into the kitchen and filled it with canned goods from the pantry. Annelise is talking now and was quite clear about her desire to "go shopping." Qavah and Annelise have a great relationship and are always excited to see one another. When Jenn drove up and the van door opened, I was in the kitchen but could hear Qavah and Annelise shriek and squeal when they saw each other. I loved it.

I don't know how many ways there are to say how grateful we are for these days. To watch Kathryn working around the house for herself is a daily reminder that God is the giver and sustainer of life. One of our discussions tonight centered around the subject of grace. It touched my heart that, as Colin was sharing some thoughts with us about God's grace, seated around the table was tangible proof that God has poured out His grace on this family. I'm counting my blessings.

Father, let me take these treasured times and hold them close. They are a gift from You. Let them be to me a loving reminder of Your grace when the days grow dark and stormy. Amen.

Jenn's Birthday is September twenty-second, so tonight we had a family celebration:

Colin carved out the center of the apple, so we could place a votive candle inside of it:

Annelise and Qavah are best friends:

Wednesday, September 17, 2008

Goodness and Mercy

"Surely goodness and mercy shall follow me all the days of my life." That's a bold statement from King David when he was just a shepherd and had his whole life ahead of him. How could he know that goodness and mercy would follow him? How can anyone know that mercy will be a theme of their lives? The answer of course is simply that David knew His God.

As Kathryn works another day and Qavah enjoys her time with me, I can say with assurance that over the past year "goodness and mercy" have followed us. It is pure joy to have arrived in this place. The last two days have been restful with quietness and peace strengthening us for the days ahead. I'm so thankful for the rest that was waiting for me beside the still waters.

Monday, September 15, 2008

A Five Year Old

I've told God time and again what a good idea it was to give me another child. If it hadn't happened all His way and in His timing, I never would have thought of it myself. He made it happen in a miraculous way. Tomorrow Kathryn starts a new job. Qavah and I will spend the day together. Since getting our adoption papers, I have begun a search for a new medical team for Qavah. I am no longer a "foster parent," but a parent looking for answers and I will not stop until I get some. I have several calls in to UVA Medical Center, and expect to be taking Qavah there for extensive testing. I can't think of a better way to use my time than helping Qavah overcome some of her physical challenges.

In the meantime, I have the joy of teaching a smart little girl all about God and everything He made. One Sunday she went to children's church and came back to sit with us for the closing of the service. She was carrying what looked like two bowls stapled together. The top bowl was inverted like a lid with rainbow-colored pipe cleaners in an arch across the top of it. She sat down beside us and in a whisper said, "Mommy, I made Noah's Ark!" Sure enough, I could see how it looked like a little boat with a rainbow stretched across the top. Then she said, "God saved the animals in here, but I ate them all." Inside the bowls were crumbs that were remnants of animal cookies. As I laughed discretely through the rest of the service I thought, "See, this is why it is fun to have a five year old again."

Sunday, September 14, 2008

Oatmeal All Around

This morning after worship the five of us were hungry. As we were deciding what to do for lunch and tossed around the idea of visiting the new Mexican restaurant, or eating hamburgers, someone said, "How about one of Daddy's big pans of oatmeal with raisins and brown sugar?" That was the one suggestion that made us all respond with a resounding, "Yes!" Paul looked rather surprised that, given a choice, everyone would want his cooking above everything else mentioned. As we gathered around our own table, bowing our heads to thank God for the food, I was especially thankful that we were all able to eat, and that the simple comfort of a steaming bowl of oatmeal was enough to make everyone happy.

The girls are healthy today but tired. We are headed to our beds for naps. Could it be the touch of maple flavor Paul put into the oatmeal that has made us feel content and dreamy? Whatever it was, we are ready for an afternoon snooze. Enjoy your Sabbath rest!

Friday, September 12, 2008

More than a Piece of Paper

Today, in the eyes of the law, Qavah is really and truly ours. Our friend, and advocate for Qavah, came to visit us this afternoon carrying the document that we have been waiting for since last February. Yes, it is a piece of paper, but its meaning is a huge event for our family. Our final adoption decree was signed and delivered! Qavah stood right in front of Bill as he looked her in the eye and said, "This paper means that no one can ever take you away from your Mommy and Daddy!" Qavah had such a priceless look of delight that I wanted to capture the moment on camera.

To know that she has a place of belonging, someone here to fight for her, and someone to rock her to sleep, means so much to us. She was treasured and loved before the piece of paper arrived, but today makes everything official. I asked Qavah if we should celebrate tonight when Daddy gets home. She said, "Yes! Let's go shopping!" She made me laugh while the tears were still brimming in my eyes from the wording of the adoption document. They read, "Wherefore, it is now by this final order of adoption ADJUDGED, ORDERED, and DECREED that the named infant child is henceforth for all intents and purposes, the child of the petitioners, Paul and Dawn Campbell." The matter is settled in Heaven and on Earth. AMEN!


Thursday, September 11, 2008

Medical updates

There have been some very positive changes in Kathryn's medical care. For one thing, she has not had an overnight stay at the hospital since last October. We credit that to a GI doctor who is relentless in his care of Kathryn. He saw her this week and changed one of her daily medications to the latest drug to hit the market for acid reflux. It is working very well. He gave her a ten day supply to try. As it turns out she is already seeing improvement. Also, her esophagus is being treated with herbal tea! After weeks of a strange tightening in her throat and esophagus, the doctor told her that he just got a new patient that had complained of the same thing. He tried everything to help her and finally asked her to drink very warm herbal tea at the onset of her problems throughout the day. Kathryn started doing that yesterday and has found relief at last.

Qavah has been low on energy after her last transfusion. She tires easily and with all the doctors' appointments we've had this week, she was worn out today. Her afternoon nap stretched into four hours. We kept activity to a minimum and watched Little House on the Prairie. She was not familiar with the series, so I enjoyed watching her reactions to Pa's fiddle, the Ingalls' cabin, and the little dresses the girl's wore at that time. She comments enthusiastically over many things so I enjoyed observing how she thinks. It was fun to watch her get all excited for the Ingalls' girls when Pa got home from hunting. That's also her favorite part of the day; daddy coming home.

Tomorrow is Kathryn's Remicade treatment. Now that her body has stabilized on Methotrexate, her GI doctor is going to try to stretch her Remicade treatments out further than six weeks. It is normally given every eight weeks. He promised her an immediate appointment for a treatment if she started having symptoms after six weeks, so she is going to try that. The care Kathryn is receiving is something we all prayed for and I can say for certain that God has given her His best. Now we are praying for a new medical team for Qavah. We appreciate your prayers and have seen many of them answered.

Tuesday, September 09, 2008

Having Qavah

"Qavah" means hope and patience. When I say it, I wonder why I haven't seen more plaques or wall-hangings using that word. It has a lovely sound. Maybe it isn't as popular as the Hebrew word, shalom, meaning peace. But every home needs shalom and qavah. At night we tuck Qavah in bed asking the Lord to bring healing to her body. Yet every four weeks we hear from the hematologist that her labs show she needs another transfusion. It would be very easy to think God is not hearing us, or that He chooses not to heal Qavah. So we think of her name, and remember that while we are not seeing progress yet, God has a plan for Qavah. And with hope and patience we wait for the healing we believe will come.

This month I'm having my new license plate made for my car. I decided to have the word "QAVAH" written on my plate to remind me everytime I spot my car in a parking lot that hope and patience is a good theme to live by while I wait.

Monday, September 08, 2008

Over the River

Yesterday we drove to Fishersville to spend some time with Mom and Dad. After waking up late we had a bacon and egg breakfast. After breakfast we all looked sleepy again and went back to bed. This was a highly unusual Sunday morning for us, but one we really needed. We couldn't get Qavah moving and decided to slow the pace for her sake. We all found it was greatly needed and were happy that Mom and Dad had coffee and cookies waiting upon our arrival.

We caught up on the family news and shared a quiet Sunday afternoon. Back when I was a kid, we used to visit my Grandma and Grandpa on Sunday afternoon. They lived about twenty minutes away, and I remember my Grandmother having a little dish of mints near her chair for visitors like me. She would tell me to take just one, but then she managed to slip me an extra one for my pocket. She had a little ceramic dog that I liked to look at when I visited. The words on the underside said, "made in Japan." It had a head attached to its body with a spring so its head bobbled up and down. I liked to jiggle the head and watch to see how long it could bobble.

I don't really know what made going to Grandma's house so special. But after lunch on Sunday when we heard our names called and the command to get into the car, we got excited. I liked grandma's pillowy hugs. I liked the way her house smelled, that her candy dish was full, and her little ceramic dog was always on the same shelf as my previous visit, as though it sat there all week waiting for my return. Years from now when we are sitting around the table recalling visits to our Grandparents', I know the girls will also remember the sweet "little things" that made them feel loved. We had a lovely afternoon.

Qavah playing with Grandmom's cat, Misty:


Granddaddy wanted another woodworking project after finishing the harp he built for Kathryn. He is now building a bouzouki:

Granddaddy and Qavah:

Friday, September 05, 2008

Melt-A-Ways

One of Mom Campbell's favorite candies is the Melt-A-Way mint. They are little round drops of mint flavored white chocolate. They come in a clear bag and the colors are a soft green, gentle pink, and yummy pastel yellow. They have white candy sprinkles on the flat side. I have found them around the holidays at Hickory Farms. They really do melt-a-way right on your tongue leaving a gentle after-taste of mint in your mouth. They are so yummy that putting a candy dish full of them next to a dieter would be plain cruel.

I got to thinking about Melt-A-Way moments today when I lowered Qavah into her hot bath with lavender oil. Her eyes grew glassy and I heard her say, "AAAHHHH!" Then I thought, "If life had more Melt-A-Way moments perhaps we would all eat less chocolate."

Wednesday, September 03, 2008

More Birthday

Today we girls woke up with the same idea. We made our way to the kitchen for coffee and leftover birthday carrot cake for breakfast! Just a few bites seemed reasonable and it was a meal that reminded us that we are still celebrating.

After a lovely breakfast we got ready to go to the hospital to have Qavah's blood tested. Just one year ago at the hospital in Louisiana she had to be placed on a papoose board and strapped down to get her blood drawn, while screaming her heart out. Today Kathryn took pictures of a composed Qavah as she was having her blood drawn. As a result of answered prayer, she has learned to trust us and take charge of her emotions. This is something she has to do every four weeks and I see God's goodness in these pictures. He gives even babies the grace to accept and find joy in difficult circumstances. Without complaint she held out her arm and had two vials drawn. She was rewarded with hugs, stickers, and her Red Cross bracelet. I am blessed to witness the daily grace.


Tuesday, September 02, 2008

Glimpses of Normalcy

As I was baking Kathryn's birthday cake today, I had another glorious glimpse of normalcy. Kathryn could smell the baking from upstairs and came down to the kitchen to investigate. Her pancreas is functioning like it should so she can smell food, savor the aroma, and eat it. Therefore, her anticipation was building this afternoon, and throughout the evening she was feeling celebratory. After blowing out the candles, she savored every bite of her birthday cake. Our hearts are feeling the importance of this season of celebrating, and tonight I had a sense that many more days like this are yet to come. I am ready for the good things to come, and thankful for them before they arrive.

There is a quaint little prayer book called The Valley of Vision that was given to Kathryn that I'd like to quote tonight. One sentence jumped out at me last week that is fitting for this season of praise. "I bless thee for tempering every distress with joy." Amen.





Friday, August 29, 2008

Peaches, Jazz, and Family

I wonder what our joy looks like to God as He observes us having fun. Does he throw his head back and roar with laughter? What must it look like when He is delighted? His word plainly tells us that He does experience delight. It is written in Zephaniah 3:17:

"The Lord your God is with you,

He is mighty to save.

He will take great delight in you,

He will quiet you with his love,

He will rejoice over you with singing.”


I'm not sure what it looks like, but I do feel His pleasure on nights like tonight. After a late dinner, Paul Burton put on some easy listening jazz music, and we all stood at the kitchen counter peeling a bushel of peaches. Qavah was dancing to the music and one of my favorite Norah Jones songs came on the radio. My husband stopped what he was doing to dance with me in the kitchen. While Kathryn and Paul Burton treated the moment with respectable giggling, Qavah laughed her head off loudly. She screeched as she jumped up and down saying, "Look Kathryn! Daddy is dancing with Mommy!" Out of nowhere I remembered that God sees, and I can actually say I could feel His pleasure. We danced, told stories about our week, peeled and sliced peaches, and put them in the freezer to be made into those wonderful mid-winter hot peach cobblers.

We've been celebrating this week. Paul and I had our first date thirty-five years ago which is pretty special to us. We've spent a couple evenings this week thinking back with nostalgia. It's funny how even with the passing years and millions of details we've handled since, our first date hasn't dimmed in our memories. On our first date we went to get a bite to eat at the only burger place in town, then gathered up our order and drove to the park to eat it. We talked about everything and laughed a lot. It may have seemed like no big deal to anyone but us. But looking back we can both say we felt God's pleasure in making that match. I'll bet there was some singing over us that evening. As we danced tonight after thirty-five years, I can imagine that His song is even sweeter.