Summer Bloom

With the arrival of Autumn, I have been sorting through Qavah's clothing and pulling out the sizes she has outgrown. To my amazement, her feet have grown two shoe sizes this summer and the winter pants left from last year are too short to be worn this season. Annelise now shows up at our house wearing Qavah's smaller sized clothes. It is remarkable how much children grow in the summertime. With rest, good food, exercise, and sunshine, they stand taller in the fall and look older somehow. The joy in all of that growth comes from recognizing that cells are dividing as they should, and that bones are growing normally. While I might be tempted to feel sad about Qavah growing up so fast, I am actually quite thankful for her development.

We have had so many good days all together that my heart is full of thanksgiving. I haven't known a time in my life like this before. But as I woke Qavah this morning, I asked her how we could celebrate today. She said, "We could shop at Wal-Mart and get French fries!" So that is what we did. And we were still celebrating tonight as we tucked Qavah in for the night in her new size 5 pajamas from Wal-Mart. God is good.

A Date

This past weekend was packed full of work, errands, babysitting, etc. Paul passed me in the kitchen on his way upstairs and I asked for a kiss. "Something is missing in our relationship," I pouted." "Yeah, like romance?" he asked. Bingo. This week we are planning a date.

Paperwork

While Qavah received her transfusion yesterday, I sat beside her filling out paperwork for the NIH. The questions were probing and most of them could not be answered. I breezed through ten pages because I have no birth-family history on Qavah. Someday, birth parents may be required to fill out forms that give an adoptive family some medical history. That would certainly help if the child begins to show signs of an inherited illness. We are focused on that dilemma only because we are now in a position to answer questions that could help lead scientists to a cure for Qavah.

Yesterday unfolded just as I had imagined. We all arrived home to a wonderful hot meal and during our table conversation I heard good words. "Qavah was brave." "I finished my homework." "I met an interesting person at work today." Good food, laughter, and encouraging words, all made for a lovely dinner. That was topped off with dessert later with Colin and Jennifer. (Happy Birthday, Jennifer!).

This afternoon I am ready to mail off the packet to NIH. Our two years of research has opened doors to the NIH and to Johns Hopkins. We have filled out stacks of paperwork, located all hospital records, and have prepared Qavah emotionally for the research. Now we wait. And now we trust that the One Who knows the number of hairs on her head is at work.

I agree with Job 42:1 "I know that you can do all things; no plan of yours can be thwarted."

Meat Loaf

Our family is having a busy day today. Although it is early in the day, I have given some thought to dinner. Qavah and I will be at the hospital for her transfusion this afternoon. Paul Burton will be studying at home but will be able to pick Kathryn up from work. My husband will come home after work as hungry as a bear. We'll all arrive home about the same time and everyone will be thinking about a meal. I've settled on serving meatloaf for dinner.

Once the meat, oats, ground carrot, and onion were mixed together with egg and milk, I started thinking about how it feels to arrive home to the fragrance of a hot meal. It warms the heart. I may be as Old-Fashioned as the oats I put into my meat loaf, but I love having my family walk into the house after a long day, sniff the air, and say, "It sure smells good in here."

It's more than the meatloaf, buttered red potatoes, and green beans that I look forward to enjoying. It's the conversation around the dinner table as we catch up on the day. Our meal starts with a prayer asking God to bless the food and thanking Him for His goodness. It continues with enjoying the food, exchange of the days' news, and appreciation of each other. There are many good reasons why families can not sit down to the dinner table together these days, but it sure adds some healing goodness to the end of the day.

It's early and I don't yet know what challenges or delights this day will bring, but Lord willing, it will come to a close with meatloaf and smiles all around.

His Story

While gathering together all the necessary documents to send to Johns Hopkins, I read the very first medical report written about Qavah. I read it greedily; scouring the pages for detail. She had a history before she became "ours." The physician noted, "baby born with no cry." That statement followed a long list of serious health problems, some of which she still exhibits six years later. In reading the history my heart responded with tender emotion to the beginning of God's story about Qavah.

Our common bond in this life is not just that we are all human, but that His Story is being written and we are all a part of it. His Story isn't complete without the chapter He is writing about you. And as you flip back through the pages to the beginning of your life, I hope you see His Story as a great love story. I hope you'll find, that He thought you worthy then, and has not stopped thinking about you since.

Yesterday, while out shopping, Kathryn and I met three women who knew about us through reading our blogs. They introduced themselves and shared their interesting histories. They were in the midst of working through a variety of challenges themselves. Those women inspired us and we prayed for them when we got home. Life is a series of joys and challenges, and in them God is revealing Himself and writing His Story. Kathryn and I commented to the women that it will take eternity to hear all of the redemption stories He has written. I have chosen to believe that the Author of The Book Of Life has published a work of fact not fiction. The end of His Story is a victorious one, where death is defeated and the battles won. That's an ending that makes the whole book worth reading.

"In the beginning God created the heavens and the earth." His Story is written in the Holy Bible and continues with you and me. And the very last verse is spoken as a blessing over all of our lives, "The Grace of our Lord Jesus Christ be with you all. Amen."

Genesis 1:1 ... Revelation 22:21

Something to Do

When God gives me something to do, I feel His pleasure when I get started. We have been given a great opportunity to help Qavah through Johns Hopkins Kimmel Cancer Center. They sent me a "to do" list. I am to provide them with all the background information to help the doctors get a better idea of Qavah's condition before they see her. I used some of my time yesterday having my car inspected and oil changed in preparation for the driving ahead of me. I spent some time this morning collecting hospital records and preparing to send the packet of information out by the end of this week. And in the "doing" of these simple tasks I have this marvelous hope that God has given me that Qavah is going to be healed.

She on the other hand has no concerns about these tasks that must be done. She just goes along keeping me company. She played with the toys at the car dealership like it was a special treat while my car was being serviced. At home she had a little bowl of popcorn and watched a movie while I sorted through her medical records and made some calls. At bedtime I have been telling her a story about a little cell named "Killer" (PacMan) that goes about devouring little dots (or red blood cells) and he must be stopped. To anyone on the outside it may look like we are just moving through the hours in our day. But in my heart I know I am following the path God laid out for me and I'm learning to never, never, never, give up.

As I go about accomplishing these tasks, I am imagining Him doing all the necessary things behind the scenes, undetected by me, to show me His glory and grace. Never far from my thoughts is the moment when we are told that a treatment plan is working. I pray for that day with all my heart.

Belonging

I woke up yesterday morning and opened my eyes to see Qavah standing beside my bed staring at me. I had to get more sleep. I asked if she could come up on my bed and sit for awhile so that I could get a little more sleep. She climbed up on the bed, put her head down beside me, and started playing with my hair. I fell asleep with her holding my hand and woke up an hour later with Qavah still staring at me. I said, "Qavah, you were as quiet as a little mouse." She replied, "And you snored like Daddy."

What a funny little picture; my little daughter lying there as quiet as a mouse, while I sawed some serious logs. I asked her later what she was thinking about all that time. She told me she was thinking about wanting to look like me. I knew what she meant. She's beginning to notice that the color of our skin is different. But when we got dressed we both wore brown slacks with red blouses. That thrilled her. Kathryn saw us dressed alike and reminded me that she went through that stage of wanting to wear matching clothes as well. Now that she is an adult I asked her why she had wanted to dress just like me. She said, "It's more than the clothes. It's going places and having other people see that we belonged together." And in her answer was the importance of giving orphaned and abandoned children a family. It gives them a place to belong.

Surprise Answer

Last night I was lying beside Kathryn praying. I asked God several times throughout the night for some sort of sign that would help us know what was going on with her. Paul Burton checked Kathryn in the middle of the night and suggested the swelling in her arm and face was her body's way of fighting an infection of some kind. He thought her doctor should start checking for a sinus infection or something along those lines. So that was what I had planned to do this morning. It is nice to have a nurse living close by!

By morning I had to help Kathryn brush her teeth and when she opened her mouth I saw the problem. It was thrush. It was there as plain as can be. I looked up the symptoms of thrush and they matched what I was seeing. After a trip to the hospital for labs and a couple of prescriptions later, she now has what she needs to address this problem. Thrush is a common side effect of methotrexate and a compromised immune system. Her labs today still showed elevated liver enzymes but the numbers were coming down from where they were two weeks ago. I think the Great Physician was smiling when I started brushing Kathryn's teeth this morning. I did ask Him for a sign. If she had been able to brush her own teeth, would I have seen it?

Call unto me and I will answer thee, and show thee great and mighty things, which thou knowest not.
Jeremiah 33:3

Thursday Night

Kathryn is not doing well tonight. Paul got her hot tub filled and we have soaked her hoping to relieve some swelling in her body. A co-worker noticed today that one side of her face was swelling. Now her right arm is swelling. She said she feels poisoned and is bringing up bile. Her last liver function test showed elevated levels and we were to have her rechecked next Monday. But I will take her to the hospital tomorrow for those labs to see if her blood work will reveal anything. She suspects her pancreas is involved somehow and therefore she is limiting her diet to soft foods and liquids. Her pain is manageable without pain medications and we pray it will stay that way.

I had a call from Qavah's geneticist today that was very encouraging. Qavah will most likely get an appointment to see a top hematologist at Johns Hopkins. He has made the study of bone marrow failure the focus of his career and we are very fortunate to have his interest. The geneticist took my phone number and email address and told me that I will be hearing from Johns Hopkins shortly. Every time the phone rang today I felt hope rising. One of those calls will be the one I'm waiting for.

Mom and Dad Campbell drove down from Fishersville to visit today for Mom's harp lesson. We ate dinner together while Kathryn slept upstairs. I missed her at dinner because she absolutely loves sitting around a table with family.

Tonight as we settle in, I feel the strength that God gives me when life is pressing in and there is no where else to look but up. Over the past three years I have seen God's goodness and find it easier now to trust Him for this new battle with Kathryn. Tonight when I was lowering Kathryn into her tub she said, "Mama, I want God to give you and Daddy something so special for helping me." He already has given us that in the form of hearing gratitude from someone who has every right to be mean and cranky.

The Week Begins

After a weekend of catching up on household duties, I spent the better part of today on the telephone. I arranged my talk time with Aimee (Maddie's Mommy) and Qavah's doctor around her movie watching time. I don't think "grown-up" talk about bone marrow biopsies and research is good for her. So while she watched Chitty Chitty Bang Bang for the tenth time, I was on the phone. She isn't able to express to me why she loves that movie so much, but she asked me to sing a bedtime song from that movie called Hush-a-Bye Mountain last night. I did my best with Edelweiss from the Sound of Music instead.

I've been in touch with Aimee about trying to get our little girls to Johns Hopkins at the same time, since genetically they have a common chomosome deletion. Qavah's geneticist here in Roaonke will be receiving Maddie's records hopefully by the end of the week. The geneticist will set up the appointment at Johns Hopkins. Aimee and I would be so thrilled to go to that appointment together with our girls. We are praying that it will happen all in God's perfect time. Please pray that they will be able to get an "Angel" flight from Phoenix to Roanoke or Baltimore in order to make the appointment.

Aimee and I have such a strong driving desire to get help for our girls. Our goal is to find a drug that will put this blood disorder to rest so that Maddie and Qavah will be able to live a normal life. This is a high calling for a couple of mommies. It is a good thing to have the Most High God hearing our prayers for a break through.

Working Vacation

We are celebrating Labor Day by laboring over our "to do" list. The girls are both having some very good days. Therefore, now is the time to get things done around the house. This past week I painted the walls and trim of our dining room and finished a couple more projects that have been waiting for me for three years. Yesterday we all spent the day working around the house. Paul Burton helped most of the day so we were able to accomplish quite a bit.

When we got home from church today we sat down in an improved dining room. The color is called Hydrangea Floweret; Kathryn's favorite flower. It's refreshing and we all like it. We work well together and are thankful for the joy of accomplishing tasks as a family. But greater still is the joy of holding hands around the table, acknowledging God's goodness, and thanking Him for all He has done for us. Right in the middle of a working weekend is the Sabbath Day, when we are called to rest. And that is just what we plan to do today.

Transfusion Day

We arrived at the hospital early! The best thing about early morning transfusions is watching the good programing on TV with Qavah. There are plenty of teaching programs to help us pass the time since a transfusion takes three hours. Qavah settled in with a blanket from the warming machine, a strawberry nutritional shake, and was good to go. It was nice to be in Elmo's World for an hour with my daughter. Today's show was all about pretending. What would life be like without pretending?

Why is it that pretending is one of the greatest things we remember about being a child? When I was little I watched Roy Rogers and Dale Evans on Saturday morning TV then spent the rest of the day playing cowboys and Indians with my brothers. Being good at pretending isn't just for kids. Pretending to be brave helps us to step out in faith when our hearts are about to faint. I still like to pretend, but now I consider it a serious skill and I'm glad I had Elmo to remind me of it this morning.

Sleep Study

Paul was stung by a hornet on the side of his face on Saturday. By Sunday night his eye was just about swollen shut. He was busy in the barn looking for a piece of wood and didn't notice that the hornets in the nest above his head were in an uproar because of his presence. When he went to the doctor today his blood pressure was higher than it had ever been. Paul thought it was because of the hornet venom or the fact that he had just been told he has to go to a sleep study tomorrow night.

One of the things I like about being married is having a bed buddy. Not the little rice bag things that are warmed in a microwave to keep me warm, but a real live husband. The bedtime stories, the warmth on a cold night, even the snoring, is part of our story. But the doctor told Paul that he is going to have to spend the night in a room similar to a hospital room in order to be hooked up to machines and monitors. His snoring is a sign that he is not getting good sleep, and that his oxygen levels may be low during the night. Tomorrow night my bed buddy will be taking a sleep study miles away and I will toss and turn wondering how he is doing and if I locked all the doors. I'll miss his snoring.

That's marriage. You just learn over the years how to be bookends. And the story in between those bookends can be so sweet. Sleep well, friends.