through the eyes of a 6-year-old

Last night we finally broke down and turned on the heat for the first time this fall. We've been stalling as long as possible to avoid filling the oil tank. This morning Joshua went to get his shoes from the shoe basket by the door and said, "Mommy, this white thing making it hot" [referring to the radiator]. I couldn't help but laugh as I wondered how it must feel to discover indoor heat for the first time in your life, especially when you're as mechanically minded as Joshua.

nephrology news

Let me start by saying: 3 posts in one day?! I amaze even myself. Of course, I've accomplished absolutely nothing else today, but that's not the point. As long as my kids are dressed, well fed, having a fun afternoon, and unaware that their mother is a slug, I will glory in my blogging accomplishment (although it would be nice if someone would tell me what we're having for dinner).

The nephrologist called today and pretty much told me exactly what we expected to hear. Patience doesn't have any signs of kidney disease. Joshua does. Although as an added bonus to keep her from feeling left out, Patience does have a small kidney stone. Evidently it's consistent with malnutrition in her past. The doctor will take care of it, but he said there's no rush.

At this point, the calcification in Joshua's kidneys increases Dr. Tuchman's belief that we're dealing with ARPKD. The disease can also cause serious liver problems, but we're thankful that both boys show no signs of liver damage yet. I'll have to take Joshua for bloodwork later this week. If the blood shows normal kidney function, we won't have to go back to CHOP until January. If the results aren't good, we'll be headed back right away. The good news is that the longer they go without impaired kidney function and signs of liver damage, the better. Kids with severe ARPKD can show signs even before birth. The fact that Joshua is already 6 is a positive sign for him. There's never a guarantee that they won't eventually need a transplant, but each year that we can go without deterioration is exciting.

Because we had prepared ourselves for possible bad news, we're not totally overwhelmed by all this; however, you can never be completely prepared to learn that your child has a potentially life threatening disease. I'm feeling exhausted, and it's not just from a lack of sleep. Peter was already feeling stressed because he has a ton to do before he leaves town for a long weekend. We'd appreciate your prayers for all of us: for the kids' health, for us as we process the news and still try to do what needs to be done, and for Joshua as we give him the short story about why he needs to start carrying a water bottle to school.

stories of love and hope

One of the great blessings of the adoption journey is the stories you hear along the way. You tune into stories that reflect your own journey, and you are overwhelmed by the amazing love you encounter in the lives of others. Last night we had the privilege of going out on our monthly date. (Thanks, Mom and Bob!) Based on an email sent to a group of orphan advocates, we went to the movies to see Bella. It is an incredibly deep film based on actual events that makes you stop and think about what is really important in life... about family and priorities and true joy and acting with dignity and how beauty can come from deep pain. We were both completely taken in. The abrupt ending threw me (Becky) for a loop, and I spent the next few hours trying to decide if I still liked the movie. By 11pm I concluded that the story was so good that I was just disappointed that I didn't get to hear more of it. We went to see Bella because of its connection to adoption, but it turned out to be a story about so much more. I didn't even realize it was a true story until I looked it up this morning to put a link in this post. Now I'm completely overwhelmed and ready to watch it again. You should definitely see it. If it's not showing near you, come see it in King of Prussia. I'll cook you dinner, send you off with discount movie coupons, and give you a cozy bed to sleep in if you need it.

Because my chilly toes have encouraged me to stay on the couch under a quilt this morning, I had the opportunity to be blessed by another story of hope, love, and faith while I was catching up on my adoption blog reading. If you have a few extra minutes, read this post from a mommy who just brought her kids home from Liberia... in a very different way than she expected. My heart is so encouraged, and I'm feeling so thankful for the journey we've traveled the past 2 years that I just had to share because many of you were a huge part of our story. Now I'll excuse myself and go smother my kids with kisses before I make lunch.

insatiable appetite

It's no secret that Garty loves to eat, but recently his favorite game is pretending to eat food. Seeing a kid so young pretend is really cute. Right now he's having a blast "eating" Duplo blocks (when he takes a break from chasing Patience in circles through the living and dining rooms). It appears that his tumble on the stairs didn't do any serious damage. This morning all the bumps on his head are completely gone. What a relief!

waiting for news

Joshua and Patience had their abdominal ultrasounds early Friday morning, but we still don't know what the conclusion is. The tech originally said that the doctor would look at them and tell us what he saw right after she finished. Afterward the story changed. She said he decided he needed to look at them more thoroughly and compare them to Garty's ultrasounds in order to complete a report. We're assuming this response means that he saw something abnormal, but we don't know what. They told us to put a call in to our specialist so he could get back to us in the afternoon, but we never heard from him. So now we wait until Monday to hear something.

Last night we distracted ourselves on a rainy Friday evening by having a carpet picnic and watching Jungle Book. Everything went smoothly if you ignore the fact Garty sat on his plate of pizza several times when he got excited and started bouncing around to the music. All 3 kids actually sat through the entire 78 minute movie and went to bed happily afterward.

Today Peter and the boys went to a memorial service for a friend's mom while Patience and I went to a "girl party" (a.k.a. bridal shower) for my cousin's fiancee. Everything went well until we ended the day with Garty taking a serious tumble down the stairs. We kept him up late to see if he was acting normal. He was his usual active self after all the initial crying, but we're still going to check on him frequently during the night to make sure he doesn't show any signs of a concussion. Once the initial adrenaline wore off from the scare, we were both overcome by a strange mix of nervous, fear-filled energy and sheer exhaustion. So much for our great plan to put the kids to bed early, chill on the couch with a movie, and get some good sleep. Kids really mess up our well-laid plans! If you read this message over the weekend, we'd appreciate prayers for our baby boy (who doesn't seem much like a baby anymore). We'll update you on all the kids' health as soon as we have something to share.

still out there?

Is anyone still checking our blog? We're assuming most of our readers have given up on us. Our silence has been a combination of exhaustion, stress, and frustration over the fact that it takes 10-20 minutes of kneeling on our laptop (literally) to get it to start up properly. Then if we are distracted by anything (like a child, for example) for more than 2 minutes, the computer shuts down, leaving us to start the entire process again. On the positive side, we're making some progress on the computer repair front, so we're greatly encouraged. We don't realize how much we rely on our computer until it's no longer available. In our 2 weeks of silence about our family, a lot has been happening. I'll try to sum up quickly before anyone needs my attention and close with some fun pictures from yesterday.

The day after our fun dentist visit, the kids and I (Becky) headed to CHOP to see the nephrologist. At this point, they're still make assumptions about what disease Garty has. There are some signs that his disease may be progressing. They particularly need to monitor his blood pressure because hypertension is common in these situations. Garty's is currently on the high end of normal.

The doctor checked out Joshua and Patience. He was able to feel their kidneys, but they weren't huge. Both of them will have ultrasounds this Friday to see if they have cysts as well. We'd appreciate your prayers for all 3 of our kids. The idea of having 3 kids who may eventually experience kidney failure is quite disturbing.

After standing around for a while trying to keep Garty out of trouble while all our upcoming appointments were being scheduled, it was all I could do to get our fussy baby through his bloodwork. I had no idea how utterly exhausting medical appointments could be. The lifesaver for me was that our friend Daria was on rotation at CHOP for a few weeks, so she took us to lunch in the cafeteria. After an hour or so with her and her husband, Gabes, I was ready to face the rest of the day.

The weekend of October 12th was designated "house project weekend" at our place. We had several major things that needed to be taken care of before winter. Over the course of several days, Peter installed a new front door and then (with plenty of help from Gabes) stuccoed around the outside of our mudroom to stop the leaking and subsequent rotting of our walls.

Monday the 15th, Joshua went to the ENT to see about the hole in his eardrum. The hole is small, and he is experiencing only the smallest amount of hearing loss because of it. The doctor feels that if we can keep it from becoming reinfected, it may heal by itself. We go back in January. If it isn't healing, they will have to run some tests to make sure there isn't a cyst behind his eardrum. Removing a cyst is a major procedure, but repairing the eardrum in the absence of a cyst wouldn't be a big deal.

Last weekend, I went away by myself for the entire weekend thanks to my dear sweet hubby. He secretly signed my up for a scrapbooking retreat with his own birthday money. I drove to the Poconos and had 48 hours when I didn't have to do anything except eat, sleep, and put our treasured photos in albums. As a bonus, autumn is in full swing up there, so the colors were gorgeous. It was absolutely wonderful. Peter took the kids to his Mom's house overnight on Friday and then spent Saturday afternoon and Sunday with them at home. He even made it to church and had dinner hot and ready for me when I arrived home Sunday. I am truly a blessed woman.

Joshua went on his first field trip Monday to Highland Orchards. They picked apples and tiny pumpkins, learned about apple cider, and made scarecrows. I can't imagine being in charge of a field trip for the entire kindergarten, but everyone seemed to have a great time.

Yesterday was a special day at our house. It marked exactly 6 months since the kids arrived in the US. As an added bonus, it was early dismissal day. We headed to the zoo after school and then carved our big pumpkin last night after Daddy came home. We've had the pumpkin for several weeks, and the kids have been anxious to "put a happy face on it." Daddy did the carving while Mommy, Joshua, and Patience prepared the pumpkin seeds for roasting. Garty enjoyed sticking his head in the pumpkin but wasn't too interested in the rest of the process. Plenty of fun was had by all, and today we'll all be eating yummy pumpkin seeds with our lunch.

new and improved smiles

Bright and early this morning we dragged ourselves out of bed so Joshua and Patience could have their dental work done. They drank their "juice" (sedative) and played for a while before the dentist could work. We weren't allowed to go back with them, so we caught up on our reading. Evidently Patience was very cooperative (thanks to the juice), but Joshua had a much harder time settling down. However, once they calmed him, he was fine for the rest of the time. Things went smoothly, and they were able to finish everything. We are so thankful we don't have to go back! Unfortunately, two of Joshua's teeth were worse than expected, so they had to extract one and cap another that they planned to fill. Recovery today was pretty tough at first. The kids were very agitated and couldn't understand the numbness. Joshua was in quite a bit of pain when the novocaine wore off and made sure we felt the pain with him. Peter worked from home this afternoon so he was nearby to keep me from losing my mind. We agreed that bedtime would be as early as possible this evening, so they were all in bed 1.5 hours early. Peter somehow found the energy to leave the house and is subbing for a volleyball league tonight. I've parked myself on the couch and plan to stay here until forced to leave. It's amazing how exhausted sitting around all day can make you! Tomorrow the kids and I are off to CHOP bright and early so Garty's nephrologist can check them all out.

Ugandan reflections: part 1

When we started this blog, the intention was to keep our friends and supporters updated on our life, ministry, and prayer needs. Over time, things have shifted to "all kids all the time" because, let's face it, our kids are more interesting than we are. However, in an effort to swing the pendulum back to a more holistic view of life, I (Peter) would like to share a few things that I've been processing over the past few months.

Back in May, I went to Uganda for the Amahoro Africa conference. Amahoro is a word used across much of the continent and is roughly translated as “peace.” It is similar to the Hebrew concept of “shalom,” which conveys a peace that comes from rightness in the world – or at least a desire for it. This is the beginning of a series of posts sharing my reflections on the conference. Sorry for the length. It was quite a week.

What stands out most in my mind is the almost overwhelming need of the African continent. There are so many things that have conspired to keep it impoverished. Lack of natural resources means lack of economic opportunities which means lack of education which means lack of skills which means lack of quality job opportunities for individuals and would-be business people. Lack of basic health care means disease. Malaria runs rampant. Drought creates tenuous agricultural conditions.

This says nothing about the human element. Colonial rule sapped the limited resources and kept the continent from developing industries to compete in the global market. Government officials take advantage of their positions to help themselves instead of the people. Others wage violent conflict with the established governments because of perceived injustices or simple lust for power. Institutionalized discrimination or persecution as in the Sudan today or Rwanda in 1994 plague the continent. How does a nation find real healing and unity after those events?

Through it all, children suffer the most, forced to be soldiers or sex slaves, losing parents to violence or disease, dealing with disease themselves, and being denied even a basic education. The average life expectancy in many countries is not even 40 years, and the mass of people who cannot read or write dwarfs those who can.

For the church in Africa, other questions surface: What does African theology look like? Are they doing theology for themselves or is the West doing it for them? Where do they turn for a contextualized gospel? How much of what they practice is the non-essential trappings of Western Christianity and actually stymies the growth of legitimate expressions of African faith? Who are the role models for church leaders?

I came away with several personal challenges. I, and many concerned Christians in the US, must be more intentional and informed with my politics and influence as a voter. What does it mean to work for justice for Africa in the US? What business practices do I allow to go unchallenged or even support which do not permit a level playing field? (Check out this August 9 post about Pfizer’s activities in Nigeria.) What am I willing to give up or sacrifice in order to promote the economic health and independence of Africans? Who speaks for me as a Christian if I do not? What can I learn from Africa that will help me embrace and be reconciled to “others” in my own context? As a member of the Body of Christ, what can I do to alleviate the suffering and support the ministry of my fellow members, even though they are thousands of miles away? (In case you haven’t heard, half the world lives on less than $2 US per day, and nearly 20%- over 1 billion people- subsist on less than $1 US per day. Guess where a lot of those people live?) While these thoughts could easily become depressing and overwhelming, I believe they can also motivate me and others to action.

Stay tuned for some stories about some of the people I met and things I experienced in Uganda.