Saturday, September 29, 2012

Emotional wreck.

I am an emotional wreck these days. Having given birth 5 times, I remember what it feels like towards the end of pregnancy. When you think you can't get any bigger (you can), and you cry over everything, and you just want to meet that little person. Believe it or not, adoption has many of the same emotions and feelings. Waiting, lack of control, impatience to meet that little face. I'm feeling like I'm about 7 months along with twins about now. I cry over all sorts of things. I am so anxious for Georgia and Calvin to be home. I want to know them. Learn their personalities, and see them grow into our family. See them happy. See all my children in one room! However, adoption is different because I don't know what is happening with them. I don't know how they are doing. If they have someone who is loving on them. If they have enough to eat. If they are warm. If they cry does someone rock them and comfort them? It is a hard place for a Mama, this not knowing. And it reminded me of this video. I’ve seen this video several times and every time it levels me. I think about how we will do whatever it takes to get to Georgia and Calvin. But then, then I think about all the other children who don't have someone desperate to get to them. And how precious they are to our Father. It renews my resolve to advocate for the orphan. If every Christian were gripped with this truth – that we are the hands and feet of Christ and that we have a responsibility to the weak, the hungry, the orphaned children of God upon this earth. . . I daresay there would be fewer starving little bellies, fewer babies dying of preventable diseases, fewer children growing up alone and abandoned. If we, (the Church) you know, you and me, owned this message as our OWN rather than waiting for someone else to act, what would that look like? Maybe we’d see more of God’s people adopting, visiting orphans, supporting ministries that feed and care for these little ones, spending time on our knees asking God what more HE wants us to do. Indifference is SIN. We should be taking this personally.

Friday, September 21, 2012

We're rich.

True Religion from Christian Alliance for Orphans on Vimeo.

I watched this today. Normally, if you asked me if we were rich, I'd say yes! But not with material goods. We are rich because we know God, and he has lovingly accepted us in his family. Because we have a very good marriage. We have children. Family. Friends. Health. Rich indeed. But wealthy, no. We live comfortably, but we have to budget. We have to make hard choices. We can't just buy things at a whim. Sometimes, we can't buy something period. We can't  travel all over. We don't eat out a lot. We shop at the Goodwill. And our life is good, very good. I know that there is great poverty in the many parts of the world. When we adopted Vivian, we explained to our guide, that we didn't want to just see touristy Ch*na.  He took us to a minority village just outside of the city. It was beautiful country, but like something out a movie. People plowing fields with water buffalo. Washing clothes in a dirty creek. A market with meat just lying out in the open air, no refrigeration bugs flying around. Yet, it wasn't a movie. It was real, and heartbreaking. These people welcomed us though, and were so kind. This wasn't unusual,and it wasn't an extremely rural, isolated village. It was 30 minutes outside a city of 8 + million people. Even in the cities, what is considered fairly middle class, is we would think unbearable. Some of those images are burned in my mind. And yet. I am one of the wealthiest in the world. I'm sitting in a well insulated home, with air conditioning, with food, a clean, comfortable bed and access to great healthcare. I am not unaware that there is a distinct possibility that my three adopted children's first families might have desperately wanted to keep them, but had no means to obtain the heath care that they needed. That they probably made a incredibly unselfish decision to give them up in order to give them a chance. I can't even begin to imagine having to make that kind of choice. It makes me weep.

Comfort. I like to be comfortable. The list of what I "need", it makes me ashamed after I watch this video. I can be doing more. We should be doing more, and really thinking about the gifts God has given to us and how are we using them. I posted this on facebook the other day, but it is so true.

Thursday, September 20, 2012

Life lately.

I haven't had time to write anything profound this week :) It has been pretty steady busy. We are in the full swing of school again. For being homeschoolers, I sure wish we could stay home a little more. Last Thursday we had Vivian's transfusion. Ironic that the day after I post about thalassemia, we have issues. We started out well, but then had some confusion with the new staff about Vivian's labs, and then the blood bank made a big mistake and didn't deliver her direct donor unit to the hospital to be readied for her until after 1pm. Which means it wouldn't be ready until after 3pm.  And since it takes at least 3 hours to give her the blood, it meant there wasn't enough time for before the office closed to start the transfusion. She usually gets her transfusions in the doctor's office across from the hospital. They tried to arrange for us to go over to the hospital as an outpatient, but the hospital was packed and didn't have any available outpatient beds. So we ended up having to spend the night and do the transfusion the next morning! I almost always take extra clothes and things in case something should happen, but this time, I had overslept and didn't take all that stuff with us. John-Michael had gone with us, and so we made our way down to Target, where we found a few things on the clearance rack. I got a shirt for $2.50! Then, we headed over to the Ronald McDonald house for the night. We have stayed here a few times over the years with our children, and they are so kind and helpful. A nice family had come in and cooked dinner for all the families staying there. We had a great salad, and lasagna! We went up to the game room, where John-Michael decided that having to stay over wasn't so bad. Thankfully, everything went smoothly the next morning and we headed home just after lunchtime.

Here we are in our beautiful room at the Ronald McDonald house.

The awesome game room. We had several great games of air hockey :)

John-Michael carrying Vivian back the next morning to the Doctor's office. She was feeling pretty tired and weak.

Finally, we have the blood running!

This weekend a church friend blessed us by giving us a bunk bed frame. We needed a second set for the boy's room so we were so happy to receive them! This prompted a deep cleaning of the boys room, which is how most of Saturday was spent. Late that afternoon, we went a local festival at the park. It was sponsored by a local church and we had a wonderful time. They had free slushies, and fried dough! The kids loved it.

Gideon with a little leftover powdered sugar from his fried dough.

Abram is such a little ham! He may have had too much sugar, lol.
We spent some time earlier this week at the bookstore. Always a favorite. Vivan pulled these out of her purse!

Olivia won this t-shirt at bingo with the cows the other day. It was great fun, and Gideon just loves that cow.
 It's been rainy a lot lately. This is the sky yesterday afternoon. It looked ominous, but wasn't bad at all.
V ivian and Gideon started Cubbies at Awana this year, and they are really loving it. They are getting so big!

 Today Vivian had another Dr. appointment near the zoo, so first we all went to the appointment. This is Abram on his play phone while we wait. Never a dull moment :)
 Hamilton at the zoo this afternoon. We really didn't get any pictures of the animals. It was drizzly so I didn't want to take my camera out much. It was a great afternoon though. Not crowded, not too hot, and we saw a lot of the animals.
So that's a little of what we've been up to around here.

Wednesday, September 12, 2012

Life with Thalassemia

I've been thinking for awhile, that I should do a post about thalassemia. Actually, I have these ideas all the time, and I  think, "Oh! I should post about that!" but then, I get distracted or busy or both and I forget.

When we started out on our adoption journey the first time, we knew we were called to adopt a special needs child. And we were pretty open to a lot of needs. I wondered if maybe we'd adopt a hearing impaired child. After all, we had lots of experience with speech delays, and Olivia and I had taken two years of sign language already. Or maybe a child with a limb difference. The children with obvious physical differences often wait so long.  But, that isn't what God had planned for us. First, he put a little girl in our path with Thalassemia, and so we started researching, and reading and learning and praying. And we thought that she was the one for our family. She wasn't though, and she was adopted by a wonderful family before we were paper work ready. That sweet little girl set us on our path though. We had learned what thalassemia is, and the lack of treatment options in Ch*na. We learned the heartbreaking statistics that in Guangxi province, where Vivian is from, and thalassemia is pretty common, 80% of children with thalassemia die before the age of 5, and 100% by age 12. We also learned that there were few families willing to adopt these children because it is a chronic medical condition. Meaning it is life long. We started looking for children with thalassemia specifically. And that's how we came to be Vivian's parents. When you fill out the medical checklist for your agency of what needs you are open is long. From really minor things, like eczema or birthmarks, to severe issues, serious heart defects, spina bifida, and all kind of things in between. I hadn't really heard of thalassemia. Maybe in passing in nursing school, but it is pretty rare in this country. It is sometimes called Mediterranean anemia because it is most common around that part of the world. Greek,Italian, Indian, Asian descendents. Here people have the benefit of genetic testing, they often know if they carry the genetic trait to pass it on. Generally, there are three levels of severity in thalassemia. Trait, Intermediate, and Major. This is a great link if you want to understand a bit more about the types and variations of thalassemia.

E Beta Thalassemia. Hemoglobin E is one of the most common abnormal hemoglobins. It is usually found in people of Southeast Asian ancestry, such as Cambodians, Vietnamese and Thai. When combined with beta thalassemia, hemoglobin E produces E beta thalassemia, a moderately severe anemia which is similar in symptoms to beta thalassemia intermedia.

Vivian's is specifically E Beta Thalassemia. We didn't know for sure that was the case before she came home. We only had a few pages of a medical file and one set of labs, with no gene test. Based on those labs though, we were told by a doctor specializing in thalassemia , that he believed it was E Beta. In her short medical file, it also said she wasn't needing transfusions. We hoped that would be the case, as sometimes intermediate cases will only need blood every few months, or maybe only when they get sick. We were also prepared for her to present like a beta major case, needing blood every 3-4 weeks.  And it turns out that, she is E Beta, but she is more on the severe side and needs blood every 3 weeks.

So what does thalassemia look like everyday? Like normal. Minus a medication first thing each morning. Chronic transfusions lead to high iron levels, which can damage your organs. So, she takes a medication to bind the excess iron and rid the body of it. About two weeks after her last transfusion, we go in and have her blood drawn to check her hemaglobin level. Usually we will go ahead at that point and schedule her transfusion based on that number. Sometimes its in the next day or two, if she's on the low side. Sometimes, it's 4-5 days later. Transfusion day for us, is a long day. We live about 1.5 hrs from our nearest children's hospital and our pediatric hematologist, who oversees her care. If we were local, we would go the afternoon before and they would draw blood and type and cross it and have her transfusion ready the next morning. We'd go in the next morning, and they'd hook her up and it takes about 3 hrs. However, since we are too far to go in for the blood draw the day before(and it can't be done locally) we get get up at 5am, and leave by 6am, so we can be there by 8am when they open. Rush hour traffic and all! The nurse brings her back and starts her IV. Vivian is a rockstar. She knows the routine, and she just deals with it. She rarely cries. She will tell me, "Mommy, I brave." And she is. They draw the blood from the IV for the type and cross. Then, wrap it up and we leave. They usually tell us to come back after lunch, as it takes about 2-3 hrs for them to get the blood ready. We also do direct donor, meaning five of our immediate family take turns donating for her.So, she always gets our blood. I love knowing she has a part of us. When we leave, I try to make it fun. We go have breakfast. Did you know Ikea has free breakfast on the weekdays? ! We go to the park, or mall, or the local Chinatown. We end up there for lunch usually. It's the closest thing to the food I remember from Ch*na. Vivian loves the dumplings and noodles there. After lunch, we head back to the doctor's office, and they hook her up to the blood, and we watch movies, and nap, and play board games, and read books, etc... for three hours. When she is done, they remove the IV, say see you in a few weeks and we head for home. Hopefully, avoiding the five o'clock traffic. Usually, we get home after 7pm. It's a long day for sure, but a fun one. I hope it will always be like that for Vivian. A special day to be together. A positive thing.  The older kids take turns coming with us, and it is a great time for bonding. The rest of the days in between.... are normal.
 Thalassemia IS a chronic medical condition. It does have lifelong implications. It IS so manageable, for us. She has bloomed, and physically come so so far since coming home. She wasn't being transfused in Ch*na, but she needed it. She was tiny, and her spleen was so enlarged from the chronic anemia. She more than doubled her weight in less than a year. Her spleen is normal now. She is smart, and kind, loving, and funny! I can't even bear to think about what would have happened to her if she hadn't been adopted. We are so blessed to be her family. Vivian is so much more than thalassemia. She has taught me that children with special needs are not defined by them. It's just a small part of their life.

Here she is showing off her IV. You should see her drag that IV pole around,lol.

 Here we are napping together during a transfusion.
 Sleepy face, snuggling with Hamilton.
 At the park, not letting a little ole IV slow her down!
 She has her biggest brother, wrapped around her finger.
 Matching boo hands, with Olivia the Pig :)
 Comfort food, Chinese style. Notice her mad chopstick skills even with the IV in.

Tuesday, September 4, 2012

Crazy days. Homeschooling. Adoption. Fundraising. Whew.

So I just spent 30 minutes writing a lovely post about how crazy it's been. Stressful crazy, not a lot of kids live here crazy. And lost it. I'm not sure how, as this thing auto saves. Anyway,about homeschooling and portfolios and about how I'm a terrible procrastinator. How our very last document is in Houston, TX being expedited at the consulate today so we can be DTC (dossier to Ch*na) this week. Which is a big deal. That we've been inching our way to ever so slowly and painfully. About me teaching our first two weeks of Science co-op which starts, tomorrow. And about our fundraising projects. Just imagine all that above written in lovely, interesting detail, lol. The basics are, we are planning to host our bbq dinner on the 30th of this month. It will be after church. Michael makes a mean smoked pulled pork and we'll have all the fixins, potato salad, coleslaw, baked beans, brownies. It will be donation only and we hope you'll all come and bring your friends, family, neighbors, co-workers, well you get the idea ;) It will help if we have a head count to plan so either let us know if you are planning to come, or call the church office. I've been working on our cookbook of favorites all summer, and hope to have it ready in the next week or so. I'll post about that as soon as it's ready. I'm hoping though that a cookbook is something everyone enjoys, and that you'll share it with your friends, co-workers etc. It's a small thing that multiplied by many will make a huge difference in the lives of two precious children. And lastly, this is the t-shirt we are thinking of. It's simple. And I love the truth of it. It's that we are all adopted, if we are children of God. The verse on the back reads, But to all who did receive him, who believed in his name, He gave the right to become children of God. John 1:12
Earthly adoption is such a picture of what God did for us. When I think about what I would do for my children. Whatever it takes to bring them home, and I really realize the depth of God's love for me....even before I was his. Well, it takes me to my knees. Literally. So this shirt is simple, but oh so meaningful. I hope you love it too! I think it's good for men/women/children. It's chocolate brown, and we are hoping to sell it for around $20. It will be easiest if you order so we can be sure of the number of sizes to order, but we will probably have some of the basics on hand, I hope. Of course, the more we order at a time the better the price, so better fundraiser. Let us know what you think, and please know it means so very much to us. Really and truly.