HIV and Development

Last night, while I'm typically emailing with Betty's agency at 2 in the morning, I got an email with her measurements, which I had requested. She is 19 months old and just 28 inches tall and 22 pounds. While she is chubby for her very short height, she's a tiny thing! I looked up the growth percentage charts and she is in the 3% range, which I'm guessing is not uncommon for kiddos in an orphanage and certainly not unusual for HIV positive babes. I wonder if there is a different growth chart for Ugandans? (They are shorter on the whole, I noticed....)

`

Anyway, I'm reading a new book called "Red Letters -- Living a Faith That Bleeds." Tom Davis wrote it. There was an interesting section on HIV that I read yesterday and thought I would share:

`

"The following are blatant lies about HIV: You can contract HIV by sitting on a toilet seat. You can get HIV from a water fountain or from someone else's saliva. (You'd have to drink a five-gallon bucket's worth of spit to stand a chance. Any takers?) Only homosexuals or drug users get AIDS. You can tell by looking at people if they're infected by HIV. Debunking lies is easy. The truth, on the other hand, is not. Yes, the majority of people with HIV got it through sexual contact or because of drug use. But does that make them less worthy of compassion? It seems as if we have taken a hands-off approach to this disease because people classify it, at best, as a dirty disease and, at worst, as a curse from God. But how might Jesus have responded to AIDS?

`

Obviously, AIDS is a new disease, not something Jesus would have encountered when He walked this earth. He did, however, encounter leprosy, which was considered a dirty disease at the time. Sure, there are some differences, but let's not get tripped up by that. Take a moment to look at leprosy. It doesn't require a time machine to see what it's like -- leprosy is still with us today . . .

`

[When encountering leprosy] Jesus didn't walk on the other side of the road. He didn't scrunch up his face in disgust or withhold his hand. He reached out with love and compassion."

`

Aren't we called to do the same?

Betty and the Doctor

Last week, Betty's doctors wrote me somewhat of a nasty email informing me that they would "absolutely not" provide me with her medical records to "decide" whether to adopt her. I can be sensitive and the truth is, it hurt my feelings a bit. But that's okay. I graciously responded that I intended no harm to Betty -- in fact, I care about her quite a lot. My intention in seeing the records was to understand the full scope of her issues. Not to be unfair to her.

`

In any event, my Ugandan attorney had suggested from the beginning that I hire a doctor to evaluate Betty, so that's what I did. On Monday, Betty met with "my" pediatrician. The doctor reported that Betty is in good health and is developing normally. Praise God! She has dermatitis (which she had when I was there) and because of this visit, she is getting medicine! Yippee!! She also has an upper respiratory infection, which made me think: hey, that's going around over there too?

`

All of that to say, things look good with Betty. Next up, chat with infectious disease doctor and meeting with my sister. :) Almost there! (Decision time, that is....)

`

"Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you."

1 Peter 5: 6-7

My Little Man

Here’s a quick update on Seth and his “stuff.” But first, here is a quick overview of his health background. Seth has hypo-plastic optic nerves. Basically, that means his optic nerves are dull and grey, kind of dead like. They are not bright pink like yours or mine. That means, he does not see well. Poorly, in fact. He is severely near-sighted. It is not an eye thing, it is a brain thing. He also has nystagmus, which means his eyes are in a constant state of moving, although that has improved, a astigmatism in his left eye, and pretty bad crossing, pre-surgery last fall. Because of the hypo-nerves, there are often other brain issues that join in. Like septo-optic dysplasia. With SOD, you can see pituitary issues and other developmental delays. So……

Seth had an MRI last summer. Looks mostly good. We saw a Neurologist a few times until he said we are done unless or until Seth has a seizure (another thing with SOD). Seth gets four therapies a week for his developmental delays. And, we see an Endocrinologist to monitor his hormone levels – which are regulated by the pituitary gland. At our last endocrine appointment, one of Seth’s levels was a little high, and he’s huge, by the way, so the doctor was a bit concerned that his Human Growth Hormone might be going crazy. Oy. I never push back on Seth’s doctors. But when the nurse called this time about another blood test, I was not happy. I pushed back big time. She explained it to me and eventually I told her it would have to wait until after I went to Uganda.

The first week I was back, I thought of it, but I wasn’t interested in forcing Seth to a doctor too soon after I got home. Week two, well, I just didn’t want to. So, on week three, I asked Eveline to stop by Children’s Memorial to give some blood and get it done. Thursday, the doctor’s office called and said all of his blood is NORMAL, NORMAL, NORMAL!!! I knew it. Thank you, Jesus! It’s a blast to watch God heal Seth, one blood test, word spoken, and friend at a time. AMEN.

Perspective

One of the biggest things (or maybe "greatest things" is a better phrase) that happened to me in Uganda is I got a little perspective. Okay, a lot. Pre-Uganda, I had started the process of looking for a house for my family in a nearby suburb with great schools. It wouldn't mean a very far move for us; almost right across the street. But we are still in Chicago at this point and our neighborhood school is okay but not great. With Seth's potential learning issues (potential, right God?) I'd like to be in a place where we can use the resources of great public schools. So, assuming we don't move to Uganda, we will be moving sometime in the next three years.

`

Before my trip, I was looking for houses that are about the price range of my current house, which is a lot under any calculus (this IS Chicago). Now that I'm back, I am still thinking about Seth and school and free school, but let's just say my price range has dropped, oh, $200,000 or so. I learned in Uganda that I have a lot I don't need. We are blessed to have toilets and kitchens inside and a roof! I don't need the nicest kitchen or the biggest rooms or the largest house. I just don't.

`

Let me be clear, though. I want those things. I drive through Oak Park and the big, old houses on huge lots are gorgeous and they call to me. I'd love to have that home and entertain people and be oh so comfortable. But we just don't need it. I'd like to have a little more space (for kiddos) and a yard, but other than that, we just don't need all of "it."

`

So, I'm off. Looking for a house with good bones that we can call our home. A house that will allow us to continue to love on this World, even when my job changes someday. A house that will speak lessons to my kids about what we value and how we sacrifice for it. It won't be easy for me. I promise you. I want the mansion. :) But like Linn and Dwight (http://aplacecalledsimplicity.blogspot.com) I want to live without a mortgage so I can do more. Lord, help us get there!

Lunch with my dad

Yesterday, my dad came downtown on the train to have lunch with me. I'll be honest and tell you that I had some fears about what I must have done wrong to deserve this visit. It's kind of a family joke that when dad asks you to lunch or dinner..... watch out! As it turns out, we had a very nice lunch talking about a whole host of things, not the least of which are my next adoption and Betty.

`

Dad asked me some hard questions about Betty, but nothing I haven't already asked myself in this process. For example, if you want to adopt again, why intentionally sign up for a special needs child? I think it is an imminently fair question and here is my answer. I have always known that I would adopt. Since I was a young girl, knowing and understanding the stories of my brothers, I have wanted to adopt. I never thought I would do it alone, as a single person, until the process of adopting Seth began. Back in 2007, I was very specific that I wanted a normal, healthy child because I am a single mom. God gave me Seth. What I have learned through Seth is that I have the capacity to deal with special needs and that maybe I'm gifted in that area. I look at it this way: There is a universe of people who want to have children. It's large. Most people do. Some small percentage of those people are open to adoption and do adopt. Of those limited numbers of people who adopt, there is an even smaller sub-set who will consider adopting a child with special needs. I think, as it turns out, that I'm in that group of people. By the way, if you had told me that five years ago, I would have laughed you out of town. Soooo not me! God can do strange things like that....

`

See, the HIV thing doesn't intimidate me any more. Yes, I want to see Betty's medical records and I want to sit with an infectious disease doctor and understand all that we are facing. But I've moved past the HIV in my decision to a place of wondering how Seth will react and whether Betty and I will bond and what her personality is really like. (Hard to tell in 3 hours of being together). That's all about an adoption of a child that's not a newborn. I got used to the Seth situation -- bringing him home from the hospital spoiled me! We've been together from the beginning. And the beginning with Betty will look different. I'm trying to wrap my brain around that!

`

Despite my questions that remain, God has been swinging wide the doors for me to run through thus far. I believe that when we pray for clarity, we had better keep track of the answers that come! So here's my list, so far. From meeting Betty in Uganda to today. . . .

`

May 19 Met Betty

May 20 Spent two hours with Betty

May 22 Ugandan attorney says Betty's adoption can be fast

May 24 Home to Chicago

May 25 Pediatrician tells me that HIV is "just another chronic disease"

May 25 Email Betty's orphanage

May 28 Orphanage responds to my email (yahoo!)

June 1 Orphanage agrees to provide Betty's medical records

June 1 Set up time to meet with Adoption Link re home study

June 1 Email attorney who responded immediately with checklist for adoption

June 2 Visit to neurologist to have nerve/muscle test. Clear results!

June 2 Med student at appointment calls HIV "chronic disease"

June 7 Email Lisa (mom of HIV child)

June 7 Lisa responds immediately with a very encouraging email!

June 7 Email orphanage for request of picture of Betty

June 8 Received photos of Betty (YIPPEE!!)

June 8 Update of Home Study

June 8 Learn that Infectious Disease doctor will start adoption clinic 10 minutes from our home

June 8 Spoke to Beth (doctor) re HIV and very encouraged. She notes that HIV is a "chronic disease." Catching a theme here?

June 9 Spoke to Linn, who also encouraged me!

June 9-10 Emailed over and over with the orphanage in the wee hours of the night. :-)

`

Lord, I am so thankful for your goodness and mercy. Please continue to lead and guide me through this decision. And, Lord, protect Betty. Keep her healthy and safe. In Jesus' precious name. Amen.

And then there was the freak out

I knew it would come. I knew that I was a little bit in la-la land. And this morning, it hit. The freak out. I figured if I was going to write about God’s victories on this blog, I had better write about the challenges I face as well.

I slept good last night – long and without waking up. But when I did wake up, I was agitated. Too many thoughts rummaging around my head and causing doubt, fear and panic. I wonder what in the world I’m thinking with Betty. What if we don’t bond? What if she gets AIDS? What if I can’t afford her medicine during her life? What if she dies? What if Seth doesn’t like her? What if my relationship with Seth changes? What if, what if, what if, what if…..

Then there was the sadness, again. Why am I still single? Wouldn’t this all be easier with a hubby for me and a daddy for my kiddos? What in the world is God thinking? And why not me? So many others, but why not me? I’m tired of this issue. Really tired. Tired of thinking about it, worrying about it, and being saddened by it. And yet, I’d love to bat these issues around with my husband, like so many of my friends get to. I’d love to hear his thoughts, concerns, and worries. His faith and love and support. All of it. I’m ready to not make decisions like whether to adopt Betty by myself. Past ready.

So, the wrestling and waiting and the questioning, confirming, accepting and moving has arrived. I have a few months to make sure I’m sure about this decision and any other adoption related decisions I have to make. I’m just going to pray the decision is clear as the day is long. Bring it, Lord. Your holy clarity. Come Holy Spirit, come.

The Journey to Betty

I have never been a journal writer. I’ve oft started and failed to write on a daily basis. After a hard season last summer, I started to write on my blogs – first Seth’s blog (on rare occasions) and then in December, here. Since returning from Uganda, it has been fun for me to look back and notice how God is really working on me, in some significant areas! I can see His footprints throughout my thoughts and feelings and challenges. (Maybe there's something to this journaling thing....) I have seen, as I look back, how God is refining me through my trials, something I haven’t ever really had the chance to experience so outright in my life, before now.

`
Last August, when I was grieving a broken relationship, I was forced to remember God’s faithfulness, through Seth. I wrote, of my fears about Seth, the following:

`
“At some point, I collapsed and could finally hear God. . . . As if He spoke directly into my soul, God reminded me that whatever issues Seth may have (insert list of "horribles") God will be with us. If we have to have tests and surgeries, God will be there. If we have times of struggle, God will be there too. When I feel like I can't do it as a single mom, God will step in. "I will never leave you nor forsake you," He said.”

`
And shortly after that realization, I was reminded that God has a Plan, for all us – even our children, and that His plan will be okay. I know that sounds funny, but truly, it will be okay! I wrote this:

`
“During the home study process, I was very open to whatever child God would have for me. Or so I thought. I'd take any race. Any age. Boy or girl. Any exposure to drugs and maybe even alcohol. But I was very specific that I could not handle and did not want a special needs child. I am single after all, I rationalized to my social worker, and if God has called me to adopt, surely He doesn't want it to be THAT hard for me. Hmmm. Interesting statements I made. See, God gave me a special needs baby despite my view of my own limitations. God gave me Seth with all of his glorious and, at times, painful issues. And I adore him. And I wouldn't change one thing about him. Not one. That's the definition of unconditional love. Sure, Seth's life is going to be a little more challenging than some other kids. . . . . But God is with him. God is with us. He's using Seth's "stuff" for our good and I pray every day that Seth would put his lessons through these trials to Kingdom use one day. God putting Seth in my life (a special needs child and the one thing I thought I couldn't handle) taught me that God knows and understands what we need better than we can ever know. God knows our deepest needs, our deepest desires, and the sum total of what we can handle. God knows.”

`
Then, in December, I decided to launch my second adoption journey. Despite having learned these lessons about God and how He is using Seth for our good and His kingdom, I found myself praying for a “normal” child, without special needs of any kind. Perhaps unsurprisingly, as I look back, God put the adoption on hold.

`

On January 11, God called me to pray for Seth, in his room. You may remember this post for while I prayed, God reminded me that "Seth is enough."

(http://conceivedinprayer.blogspot.com/2010/01/promptings.html )

At the time, I believed God was telling me Seth is enough, as my only child, and I was sad. It later became clear to me, however, that God had a different plan.

`
As I continued to petition God about my life and my second child and this adoption, God and I had many good conversations. Here’s what I learned in those conversations:

`
“As I talked to God about my hopes for more children and His promises to give me the desires of my heart and his command to care for orphans, interestingly, what I did not hear was the "no" I've been hearing. Instead God and I ended up talking about Seth's special needs and the potential special needs of a second child. More specifically, God pointed out to me in a clear way that I'm really afraid of having another child who has needs equal to or even greater than Seth.”

`
I also said (and this is the amazing part):

`
“See, when Noreen called about that first baby, it was pretty easy for me to look at that baby (figuratively) and say NO. But that baby, like all other orphans, needs a home too. Who is going to be the mother to the drug addicted? Who will parent the disabled? Who will love the baby with AIDS? Maybe, just maybe, God needs to work on my heart a little more before He allows me to proceed into this second adoption.”

`
And, last but not least, God explained his “Seth is enough” comment. Seth, with all of his issues, is enough -- A beautiful child of my heart who I adore and would never want to change. My next child, no matter what his or her issues are, will be enough! My realization led to this:

`
“God and I are in this parenting thing together and whatever issues come up, we can handle them. If God gives me another special needs child, OKAY. If God gives me a VERY special needs child? OKAY! See maybe God isn't saying no to this adoption after all, but is working on me and my heart to understand that Seth is enough, with his issues, and the next baby will also be enough no matter what comes.”

`
That was January 27. But that wasn’t the end. I couldn’t pull my adoption “off the shelf” throughout the spring. I just didn’t feel like God had given me the go ahead. The answer was still, “wait.” And a lot of that had to do with my health. Do I think God allowed me to feel crummy so I wouldn’t go forward with an adoption before I met Betty? I don’t know, but maybe. In my flesh, I wanted to proceed in February and probably would have my second wee one by now. But that’s not how it happened. Instead, I was on hold until my trip to Uganda, and now I see all kinds of green lights from God – every shade of the rainbow! I just need to catch up and make sure my heart is right! I don’t want to enter into this flippantly or without caution or on a whim. I intend to worship God with my heart, soul, and mind. And then, I will run. :-)

`

One more thing. You may remember that I was on a search for the verse of the journey when this blog began. I couldn't find one I loved, so we used Seth's: "Rejoice in hope, be patient in tribulation, and constant in prayer." Still love that verse. (Rom. 12:12) Well, this morning, through an amazing Word at our church, I have the new verse -- a good word whether Seth and I go forward alone or if Betty (or some other second child) joins us: "Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you." 1 Peter 5: 6-7.

Where we are

It is hard to believe I've been back for ten days already. I still feel a little bit like a stranger in a foreign land, but that feeling is subsiding. (Not thrilled about that...)

Seth and I have been praying for Betty. It is very cute to hear Seth say, "Betty." He has no idea he's talking about a munchkin half-way around the world and just one short year younger than he is! (Probably a good thing for now -- ha).

Here's the Betty update: I am in touch with her orphanage. They are being completely cooperative and are compiling her medical records for my review. I hope to have those next week and sit with an infectious disease doctor soon. I am also in touch with my Ugandan attorney who gave me a list of things I need to complete the adoption. If you saw my post entitled, "Ugandan Adoptions" you may wonder how this would work. Since Betty is positive, we would petition the Ugandan court for adoption rather than guardianship and, based on past experience, given Betty's health stuff, they will grant the adoption request. With an adoption order in hand, there is no issue getting a visa from the US embassy as Betty would be ours.

I looked back at my previous posts where I said Betty could be home in a few weeks. Hmm. True from Uganda's perspective, but not the US! I spoke to the agency who did my home study and we have to tweak it for an International adoption and then get DCFS to issue an International license (I'm apparently approved for domestic children but not International. Go figure). Then the USCIS approval. That was a little frustrating to hear but I know God wants to give me some time to have my heart and my family's hearts ready for this new challenge. So bring on the wait! Looks more like Fall now. In the meantime, I have my last meeting for the home study on Monday (no wait there!). And we can proceed in Uganda so that as soon as the US is ready, I will have the adoption order in Uganda! God is opening some doors, and fast.

On that note, as I've considered bringing home Betty, it has caused me to think about my health too and whether/how this makes sense. I'm doing immensely better and am sooo grateful for your many, many prayers. Some weirdness lingers so, on Wednesday, I called my neurologist to see if we could run one more test to put my brain at ease. Low and behold he had an opening SAME DAY. I went that afternoon, spent an hour, and BAM. I'm totally normal. Yippee! So another thing checked off my list. Praise the Lord!

There are many strange and marvelous things happening in this second adoption journey and, as soon as I think I know how it will "end" (begin) God continues to make clear that He's in control, not me. So I'm trusting that whatever He has for us is His best. Thank God for the peace I have in that!!

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, let your requests be made known to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

Supporting Adoptions

Would you consider supporting my friend Kristie's adoption from GHANA? (Who knew you could adopt from Ghana?) She has some very cool t-shirts for sale and they are only $15! With their travel date fast approaching, they could use your help. Check them out here: http://fromgodtoghana.blogspot.com/. I have a shirt and I love, love, love it!
`
Kristie's young daughter also felt the call and designed her own t-shirt to raise funds for the orphanage. How absolutely cool is that?!?!? You can see her shirt on this website: http://feedingtheorphans.blogspot.com/.
`
Don't you know a dad that needs a new shirt? :)

My little man

Seth has been in his big bed since last September. Remarkably, he goes to bed and never (ever) gets out. Even in the morning, he will wake up and talk until I go see him and we snuggle before we get up. What a sweet, easy child I have!

And then there was last night. I got home late to begin with and then had to immediately get on the phone with work. This set Seth on end as he wailed and Eveline whisked him off to a walk. When they got back and I was done, it was after 7:00. I convinced Seth to watch The Polar Express with me (his new obsession). We watched until bedtime (8:00) when I could tell he was exhausted. I put him to bed without incident and headed to the basement for more work in my office.

A couple of minutes later, I heard him coming. As I waited, Seth arrived to see me. I put him back. He came again. Back again. He came again, asking to sleep in Mama's bed. Fine. In my bed. He came again. Back again. Finally, I asked him if he wanted to watch his movie in Mama's bed, thinking how brilliant I was and how much work I had to do. That lasted five minutes. Back again. On what felt like his one millionth trip to the basement (and I realized no treadmill run would be necessary) I said, "OK. Let's watch your movie in the basement." I spread out a blanket on the floor while Seth positioned himself for viewing. I ran upstairs (again) to get the DVD player and ceremoniously set it up for Seth on the blanket. Done. I thought.

As I hurried to start working again, it nearing 8:45, I heard Seth moving again. Apparently, his movie theater five feet behind mom was not good enough and he was trying to move the blanket, DVD player and himself into my six by three foot office. Perfect. I positioned him best I could on the stamp sized space not taken up by me and my desk and, you guessed it. Five minutes later Seth was handing me the DVD player and crawling himself into my lap. Sigh. I knew it was over.

We watched the end of the movie together and I put him BACK in his bed again and closed the door, tight. He was not happy, but at long last, fell asleep. (Thank God)

Other than being a hilarious story I couldn't resist sharing, I also learned something about "Mama time." We aren't done with it yet. And maybe won't be for a while. I can't go to small group tonight and leave him again. And, Lord willing, when I head back to Uganda this year, he's going along. It's just the way it is for now. And the truth is, I love it!

Now off to start his shot regime.....