Monday, June 30, 2008

Music and Marching

Last night Paul and I took Qavah to the largest church in Roanoke. First Baptist Church downtown has a musical celebration every year called Celebrate America. The music was very good and we had the best time watching Qavah. One song was choreographed using hand-held American flags. She watched with intense interest. Today when we went to the store, Qavah enthusiastically pointed to the display of hand-held flags and told me she needed two of them. I knew what she had in mind! I got them for her and for the rest of the day she has been marching all over the house and yard waving her flags. It has been fun to see her getting into the spirit of the July fourth celebration with her flag waving.

I enjoyed taking several breaks today to watch Qavah. I even found some marching music and played it for her so she could march to a rhythm. As I was watching Qavah I was thinking of how merciful God is to continue to give me sprinkles of joy when I need it.

Sunday, June 29, 2008

Perfect Picnic

Today was a delight. There were sixty people throughout our home and land. Especially delightful for me was seeing the children running down to the creek and playing on the swings. I always know I've done a good job if the little children groan when their parents tell them it is time to leave. It was reported to me by my friend who stood guard by the swing set that Qavah behaved like a little princess. She shared her swing set with grace. I was so proud of her for doing that. The cloud cover looked threatening but it helped keep the weather cooler and the rain stayed away until after everyone left.

Kathryn was not able to get out of bed to join us for the picnic. It is not clear to me why her electrolytes are so out of whack. One of her doctors sent me some material on adrenal insufficiency and that could be what this is. Although the endocrinologist has a very busy office, Kathryn hopes to get an appointment this week. His tests would likely show something. This set back is particularly hard because she hoped the seven healthy days in Arizona were the beginning of a new trend. As our family and most of her friends have had to move on with our plans, I see her frustration when she is left behind feeling so miserable. Once again we have to trust that God has a plan and a purpose for this relapse.

Saturday, June 28, 2008

A Picnic Rain or Shine

Although Kathryn hasn't been very well today, she seems to be slowly improving. There isn't much we can do for her and she feels best when sleeping. The rest of us are getting ready for a church picnic here at the house tomorrow. The lawn is mowed. The main dish, pork barbecue, is ready. The creek is ready for little feet. The tables are set up on the porches. Am I worried about the sixty percent chance of rain and storms tomorrow? There was a time that I would have worried about it, but a change of perspective has freed me from worry over things I can't do anything about. I think our picnic will be a lot of fun. The picnic is really for a young family leaving for Turkey to serve the Lord there and share His truth with those who are longing for peace. As they face many more dangers than a thunderstorm, we are glad to have them here tomorrow along with some church friends. We used to do this kind of thing several times a year. It seems right to be back hosting an event that will bless our church. They have certainly been a blessing to us.

Thursday, June 26, 2008

A Brief Update on Kathryn

Today Kathryn was not as nauseated, but her electrolytes are still off. Her hematologist said that Stimate can do that but she has no choice in the matter. She has to use it. Another friend with a platelet disorder suggested a different drug that her doctor has used for her bleeding episodes so we are looking into that. Her bedsheets had little dots of blood all over them this morning so her body is going through some strange transition. I even wondered if our plane flight could have brought this on. Who knows what her cells do with variable cabin pressure and oxygen? Most of us never notice changes like that. But during our flight, Kathryn did complain about her ears and felt pretty exhausted. It is another event to document and consider. I hope and pray things straighten out for her by the weekend.

There were some sweet surprises in this day. A box arrived from "Cousin Mike." It was pretty well filled with home-made goodies. It was like Christmas in June. Qavah and Kathryn sat at the table enjoying blueberry-filled cookies and I was glad to see both of them able to enjoy the gift. Thanks Mike, and thank you all for praying.

Tuesday, June 24, 2008

More to Learn

This past Saturday Kathryn woke up with a suspicious back ache; the kind that feels like a pressed nerve. She had bowel bleeding late Saturday and by Sunday a hole had opened up near her ankle and dripped blood. The Stimate was on hand and she used her first dose Sunday night. It helped a little bit on Monday but tonight there is more bleeding along with a terrible headache and nausea. I'm glad she has an appointment scheduled with the GI doctor and the Hematologist this week. Her labs today showed a low red and white cell count which didn't surprise me. It seems things have suddenly turned and there is no obvious reason. She is hoping it is a temporary set-back. The trip to Arizona really helped her to see that good times are still possible even if they come a few days at a time. These set-backs cause us to rethink everything she has eaten, any possible triggers, and of course we wonder if normalcy is possible. We appreciate your prayers. This is such a demanding classroom, and HPS is a hard subject.

Wednesday, June 18, 2008

Home Again, Home Again

When the kids were little I would pull into the garage after a car trip and say, "Home again, home again, jiggety-jig." I don't know why, but we turned into our driveway last night after our vacation and I found myself saying that for the first time in years. Kathryn laughed because of the memories, and Qavah liked the sound of it. Nevertheless we are home again. The joy we have in our hearts is brimming over. We did unpack the Stimate with laughter because it never did get used. By the grace of God the "what ifs" are now the "never happened." We have had a week of the most delightful surprises and joys that cannot be captured with words. Kathryn is working on a picture presentation to give you a glimpse of our joy and an overview of the trip.

After the last post I wrote, we spent the remaining days in Arizona visiting with the Sipe family. On Sunday and Monday the girls got together and enjoyed each other. (If you are a new blog reader, Kathryn found two other girls in this country with HPS and met them for the first time in Washington DC two years ago. They were also adopted by a family in Arizona and are four years older than Kathryn.) The resemblance between the girls is remarkable. They sat together on a sofa like three peas in a pod. Between the three of them talking there was never a quiet moment. They talked non-stop using similar expressions and hand motions. They were so cute together. Just watching them was fun. When we went to get their pictures made in the Wal-Mart studio the photographer looked at Candice and Crystal and asked, "Twins?" They answered yes in unison. Then she turned to look at Kathryn and asked, "Triplets?" They all started laughing. The girls have such a unique friendship, with the knowledge that they could be sisters. They share an Indian heritage, along with the health challenges of HPS. Our time together was rewarding and Kathryn boarded the plane for home with a satisfied smile that hasn't left her.

Our trip was everything we dreamed about and more. I used to feel gratitude as an emotion on some level. I would describe it as a feeling of satisfaction, like being fed a Thanksgiving meal after being hungry. Since living through the trials we have had to face head-on, gratitude feels more like an overwhelming bubbling joy from a fountain that will never run dry. It is good to feel gratitude on a deeper level and experience the joy of being fully alive.

Crystal, Kathryn, and Candice

Saturday, June 14, 2008

Better Than We Imagined

When I was young I would dream of our family vacations and think because we were going to stay at the Flintstone's KOA that Pebbles and Bam Bam would probably be there and I fancied visiting their Bedrock home. We would travel in our family station wagon pulling a trailer and I would sit and dream about the next stop. The problem for me was that my imaginary vacation was actually better than the real thing and I often felt disappointed that the billboard hype was not reality.

However, this vacation is above and beyond anything I could have dreamed. Jim and Vicki have given us the vacation that exceeded our expectations. Their home is a haven. Kathryn took a late night swim in their beautiful pool and got chilled so Jim and Vicki led us over to their backyard fireplace. We sat around the fire telling stories and chatting. Arizona does not have pesky bugs this time of year so we were able to sit out under the stars and enjoy the night sky.

We've seen the majestic beauty of the Grand Canyon at sunset, the mountains and tall pines of Flagstaff, the red rock canyon of Sedona, and the love of our Heavenly Father every moment of every day. We are getting deep restful sleep, good nourishing food, and every need we have is being met. These are the days for which we prayed. These are the peaceful moments that we hoped would be ours one day.

A year ago this week, we were in a small hospital room waiting for Kathryn's surgery. Her bone pain was more than she could handle and we took turns staying with her because it was too hard to watch. In the confines of that hospital room, this trip to Arizona was already planned for us by a loving God Who orders our steps.

In stark contrast to Kathryn's small hospital room, we stood on the rim of the vast open space of the Grand Canyon. The enormous amount of open space gave me the feeling that I am only a very small speck on this planet; my knees were actually shaking. Since I have learned to talk to God right out loud throughout my day, I stood there overlooking the display of His splendor and asked Him, "If Your creation makes me tremble, Lord, how will I ever stand before the beauty of your Holiness?" I will need a new heart to withstand the awe.

Jim and Vicki Campbell, making our delicious breakfast:

The dreams that we dare to dream really do come true:


Having a delicious lunch in Sedona:

No vacation is complete without a shopping trip:

Thursday, June 12, 2008

Arizona Rest

Our flight and everything about our trip has been smooth and wonderful. We are staying with family here in Phoenix and their home is an absolute haven. The rest we are getting is rich and satisfying. I have pictures of Jim and Vicki's yard and pool to post after we get home. It is everything we dreamed about when we were wanting to take a vacation from our time of testing! Kathryn took her second dose of Methotrexate today and didn't feel up to doing much. So I shopped for baby food at a nearby grocery store and after finishing our Gerber dinners we sat outdoors when the sun went down. It is a quiet time for our souls; a time we have been longing for. God has certainly blessed us after many difficulties.

Paul is keeping in touch with me daily by cell phone. He put Qavah on the phone today and she told me that she spent the day with Aunt Julie. I asked her if she had a good sleep last night and she said, "Yes! Daddy rocked me in the rocking chair." Paul reported that they both fell asleep in the rocking chair last night. It seems we are all getting the rest we need.

We plan to make our trip to the Grand Canyon, Flagstaff, and Sedona over the next two days. We are taking pictures all along the way but will have to wait until we get home to post them. We thank you for your prayers for us. It is such a marvelous feeling to be taking a vacation.

Sunday, June 08, 2008

Packing for the "What Ifs"

Kathryn said yesterday that she feels like she's packing for the "what ifs." Therefore, her carry-on bag is filled with extra Prednisone, electrolytes, rib wrapping, Stimate for bleeding, wound care products, pain relief, and a first-aid kit. I thought about that several times yesterday as I saw how light and easy my packing is compared to hers. In Proverbs 31 beginning in verse ten there is a whole list of attributes that describe a virtuous woman. In verses thirteen through twenty-four she is preparing food, clothing, and shelter for her family. In verse twenty-five it states, "she laughs at the days to come." She looks ahead and determines what they may need and then takes great satisfaction in having prepared ahead of time. No wonder she can laugh at the days ahead! I can picture her like the game show contestant who is offered three hundred dollars if she happens to have a paper clip in her purse. Her face lights up, she starts squealing and jumping up and down knowing she has one, fumbles through her purse and pulls out what she is looking for; a big fat paper clip! The crowd claps and cheers with wild applause for her good fortune. (I saw that happen on television once on "Let's Make a Deal" with Monty Hall.)

While I can't imagine Kathryn breaking out into laughter if she has a bleeding episode, I can imagine her grinning and exclaiming, "I've got what I need for this!" She has planned for the "what ifs." But what I am really praying is that at the end of the trip when we are home again unpacking we can laugh and say, "we took it all but didn't need it!"

Wednesday, June 04, 2008

Keep Dreaming

The last few weeks were lit up with dreams of graduation and a wedding. Now that Kathryn has her diploma, and Heather and Andrew are married, we are turning our attention to the next dream. Kathryn has always wanted to see the Grand Canyon and next week she will have a chance to do just that. We have postponed a trip to Arizona three times because of Kathryn's health but this time we are going to hold on fast to that dream. We have a flight out of Roanoke heading to Phoenix next Tuesday and are praying fervently for good health to take this trip as scheduled. I have already been busy with laundry, packing, and cooking ahead for Daddy and Qavah. They are staying home.

This trip is like the other goals that we have set over the past two years. It is within our grasp, but we won't know until the day we leave how things will be. It is a journey of faith. We often dreamed of these goals while Kathryn was in a hospital bed. In the confinement of a small hospital room, thoughts of the open spaces of the Canyon kept us from going stir crazy. The dreaming transported us to a better place. One of my friends gave Kathryn a coffee table book of pictures of the Grand Canyon and it fueled Kathryn's dreams to be there on the south rim when the sun sets. Lord willing, seeing the Grand Canyon, and visiting with friends in Phoenix next week will be one of our dreams-come-true. But beyond that we need to keep dreaming. One day we dream of going to Israel. Kathryn and I will finish our study of the Psalms of Ascent tomorrow and now we want to see Jerusalem for ourselves. We want to walk the streets where Jesus walked with Mary and Joseph as they returned to Jerusalem every year for the celebration of the feasts. Not every dream comes true, but it is so important for us to have them.

I once met a woman named Pam through a friend of mine. Badly burned and disfigured in a kerosene fire when she was a little girl, her dreams of finding someone who would love her kept her hopes alive through many painful reconstructive surgeries. Then one day in her forties she met the man she had been dreaming of and within a very short time he asked for her hand in marriage. Although Pam is what I would consider a conventional woman, she chose to walk down the aisle to the song, Somewhere Over the Rainbow. My friend who attended the wedding said there wasn't a dry eye in the sanctuary as the words of the song rang out that brought Pam to the altar. "If happy little bluebirds fly beyond the rainbow, why, oh why, can't I?" Why not, indeed!

We all have dreams of one day doing this or that. Our day to take this trip has come. As our dreams come true, we can feel God's pleasure in them. The joy of our dreams coming to pass spills over into praise for the One Who gave us the imagination and the gorgeous places to visit. Somehow the thought of standing at the rim of the Grand Canyon with Kathryn beside me, after all she has endured, makes me want to break out into the well loved hymn, How Great Thou Art!

Oh Lord, My God, When I in awesome wonder,
Consider all the worlds thy hands have made.
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

Then sings my soul, my Savior God to thee,
How great thou art, How great thou art!

Keep dreaming!

Monday, June 02, 2008

The Wedding of Dreams

Heather and Andrew were married Saturday and Kathryn sat right in front for the best view. The wedding was one of the most beautiful we have ever seen. Heather's mom (Kathryn's Aunt Jacquelyn) arranged all the flowers, and I must say they were spectacular. The church was gorgeous. Paul Burton played various instruments as Whitney played the harp. The music reflected the tone of the day; relaxed and joyful. The reception to follow was also very elegant. Many of the family, friends, and bridesmaids, helped with the planning and food preparation. This was a family and community event with many hands to help. With the help of Jane, the wedding coordinator, it was sprinkled with southern charm. I wish we could do it all over again next weekend, but Jackie and John are happily exhausted and Heather and Andrew would probably not wish to return from their honeymoon to run through the whole thing again.

Kathryn had some difficulty with rib pain during the weekend, but it didn't stop her from enjoying herself. Qavah was healthier and had just enough energy to remain enthusiastic and cheerful. After the wedding I took them back to the hotel where Qavah slept for fifteen hours. Kathryn had her ribs re-wrapped, took a hot shower, pain medication, and fell asleep. When she would awaken we talked about the bridesmaids' luncheon and different aspects of the wedding ceremony which was rich in meaning. I was especially touched by the many people stating that they were praying we would be able to attend. All of their prayers were answered.

Last weekend reminded me again that we are not in control of our own lives. We are free to make decisions and we make our plans, but the Lord determines our steps. I wanted to be married and said, "Yes," to Paul when I was only eighteen years old, but I didn't have any control over the new family I would enter into. They were God's design and His gift to me. Surrounded by them this past weekend, I appreciated them more than ever. While we may have had minor disagreements as we raised our families, and times of struggle, we have been given the gift of unity. We share the belief that God is Sovereign and we are all born with a purpose. We value each other. We come together with our sorrows and pray for each other one day a month. Then this past weekend we were able to celebrate together in the best possible way.

I have some pictures for you to ponder. But the story behind the pictures is greater than the pictures themselves. The evidence of God's goodness in all of our lives can not be captured in one frame. Here within this family is the story of overcoming, unity, blessings of every kind, and underneath it all are the "everlasting arms," holding us together everyday. The family is a precious training ground for forgiveness, grace, mercy, and love. This is the family I was given by marriage and to which Kathryn and Qavah were given by adoption. I thank God for the picture of His redeeming love that we have been adopted into a family who has received us with open arms. Enjoy the pictures, and be sure to check out Kathryn's website where you will find details about the bridesmaids' luncheon. The memories of this past weekend are tucked in our hearts. Thank you for praying.