An American Jewett Thanksgiving

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We spent our first Thanksgiving together, telling our kids how we do Jewett Thanksgiving. No one goes to school. No one goes to work. Housework minimal. Cartoons plentiful. Parade mandatory. (Addie kept yelling at the screen for them to throw her candy!) We play games as a family. We eat steak, not turkey, because no one REALLY likes turkey anyway. We wear stretchy pants because we eat all day.

Most of all, we are thankful that we are all together for Thanksgiving this year. We have food, we have shelter, we have God’s love, we have each other. Everything else is just bonus.

When we’ve asked our kids about Christmas — in French and in English — they seem to have no idea what we’re talking about. Santa Clause? No idea. They do know about baby Jesus but have no concept of traditions of the holiday otherwise. So we took them to one of our favorite Christmas destinations: Opryland Hotel. We arrived around 4:00 and it was empty. By the time we left, it was super crowded. But the kids had a great time (between pouting episodes). We played, ate ice cream, and looked at thousands of lights. It’s great to see them experience all the joy and wonder of holidays for the first time!

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The Congo . . . And Now

Yesterday marked 3 months that we have been home from the Congo with Addie Rose and Palmer. I know I have been neglectful in posting pictures  . . . until now. I had to do some editing to protect the identities of children still in the Congo.

Most of the pictures since we have been home have been taken on Ken’s phone and posted on Twitter and Facebook.

But for what it’s worth, here are pictures from the Congo, and now. We hope that you can see the light in our kids eyes that has brightened as they have spent time in a family, and had the weight of the lies they were told to tell lifted off their shoulders. You’ll also notice several pictures of the kids of the family that we travelled with, both then and now. They have also undergone the remarkable transformation that occurs in a child who comes to know the love of a family.

Today, I’m thankful that the hardest days are over (hopefully), and that our kids are increasingly feeling the love that surrounds them by their family, their heavenly Father, and their church family. There is certainly more than enough love to go around.

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December 1st

Our kids have now been officially reaged to 6 and 8, although their birth certificates will still be wrong. They will be changing grades and Addie changing schools, on Monday, November 26th. Are they ready? No. There is just too much to learn for kids who don’t speak English. And in the last week, Addie has: pushed another child down, hit a child, peed on her mattress purposely, had a wrestling match at school, ran out of the classroom multiple times, run around the room during lunch time, and stolen toys from her school.  Clearly she is acting out — over fear of her new school, or because she is testing boundaries, or because she is simply feeling like being a wild child. Not good news when she is getting ready to move to a more structured classroom. But ready or not, here they come!

Our department at work is going through reaccreditation next week. The importance of this process cannot be overestimated, nor can the amount of work. And with my boss’s sudden unexpected retirement, I have had to return to work full-time plus. There is just too much to do. Having Thanksgiving off is doubtful.

I cannot get over my pneumonia, which is no huge surprise, given the above. I have now had a productive cough and intermittent fever for 7 weeks.

The good news is that by December 1st, we will be past all of this. If I can just make it to December 1st.

Well, That Was Awkward

Today was the dreaded parent-teacher conference at Palmer’s school. I wasn’t dreading it because he’s been doing so poorly. I was dreading it because I would have to tell her what is really going on with our son.

I went in early to see if I could catch the Principal or Guidance Counselor, but since neither were available, I went and sat outside the classroom, twenty minutes early. Within just a few minutes, the teacher came out, saw me sitting there and asked if we could start early.

Um, yes. I think that would be a good idea.

Once I was signed in, she began to gush about Palmer.

“Palmer is doing AWESOME!” she exclaimed. She started to continue on, but I needed to get it off my chest.

“Um, that’s because he’s not five,” I explained. He’s actually eight.

Stunned silence.

I know the feeling.

I explained that our kids had been told to lie and why and that we had only confirmed it two weeks ago, but that we were getting a letter from Vanderbilt Childrens’ Hospital today that reflected what we believe to be a more accurate representation of their real ages.

“If all goes according to what the pediatrician wants, we will be moving Palmer to first grade shortly. We still have a few hoops to jump through.”

“Oh, I’m going to miss him. He’s been such a good student and a hard worker.”

“The good news is that even though you’re losing our son, you’re gaining our daughter!”

“Wonderful!” she exclaimed.

And then I had to explain that though she is six, she has an unspecified developmental delay that we are still investigating with chromosomal studies and other assessments. I relayed that while she will be a very delightful and happy student, she will not have the academic prowess that our older child has. We may be setting her up for failure, but we do have to give her a chance to be in a challenging academic environment. After all, she may surprise us and her delay may be more limited to just her motor skills.

We bounced ideas back and forth for the next hour. Palmer has completed nearly all the goals for Kindergarten after only being in school for a month. Though he’ll have a tough time in first grade, to be sure, he will still be in an English learner’s classroom. With his academic ability and interest, we both have high hopes for him.

We also hope that once Addie is placed with five and six-year olds, she’ll start behaving more like a five or six-year-old rather than the three-year olds she has been in class with. As much as we have loved the preschool where she has been and would recommend it to anyone without hesitation, she needs to be in an age-appropriate classroom.

After the hour-long conversation, I went to hunt down the Guidance Counselor and/or Principal. The Principal wasn’t available, but I talked with the Guidance Counselor for twenty minutes about both of our kids. She knows Palmer, but Addie is new to her. She agreed that moving Palmer to the first grade would be a good step, even though a big one, to get him closer to his age group, but she couldn’t give us permission. It has to come from the Principal. There was even some talk of moving him to the second grade, but the Guidance Counselor and his teacher and I all agreed that for a child that speaks almost no English but is already enjoying academic success, it may be too much. I’ll have to call and schedule an appointment with the Principal.

In the midst of my conversation with the Guidance Counselor, she stopped me and said, “How are you doing? This is a lot!” I told her the truth — that beyond just the issues with our kids, my boss was diagnosed with a brain tumor a week ago, suddenly retired, and we have our four-year accreditation in 3 weeks. I have pretty much returned to work full-time, even though I’m still carting Addie to the doctor every other day. I just have to work into late into the evenings.

I am tired.

Back to reality.

On arriving home, I called the Lead Coordinator at the English Learners Office to update him and he confirmed that indeed there was precedence for allowing medical documentation to trump birth certificates (since we can’t legally change our kids’ certificates because of anti-terrorism laws). He also has already contacted the student services offices about testing a non-English speaking child for special needs. One step closer.

Our final step will be getting the Principal’s permission, but it looks like Palmer will be headed to first grade, and Addie to Kindergarten shortly. Very shortly.

I received the letters from our adoption physician officially declaring our childrens’ new ages. It’s now done. The lie has been abolished and we live in a new reality.

And THEN, I went to work.

315.9 Developmental Delay NOS

Addie Rose and I went back to Vanderbilt today for the third time in seven days. We met with the adoption physician to finalize plans for reassigning ages and determining a plan to diagnose not only Addie’s bone marrow issues, and confirm her normal echocardiogram, but the reason for her developmental delay. I’m always thankful when physicians respect my opinion as a medical provider, and as we bantered back and forth different ideas, she was both receptive and insightful.

At one point, we were discussing the order in which to do tests: Which ones should we allow to come back before ordering more? What will insurance cover? We really can’t just do a smattering of tests, and expect insurance to pay. We have to take a thoughtful approach. We’re going to start with the diagnosis of general developmental delay and the proceed to more specific diagnoses as we can.

And there it was, the diagnosis: 315.9 “Developmental Delay Not Otherwise Specified”

It’s official. There’s something wrong. With MY daughter. Not just any patient, not just a favorite patient, but MY daughter. The numbers on the lab sheet did not lie. It’s no longer just speculation. It’s truth.

After an hour-long appointment with the adoption physician, we marched through the usual procession of departments. Sixth floor for Addie to have 10 tubes of blood drawn. Lab tests repeated. New lab tests ordered, including chromosomal studies. Then downstairs to radiology. Eleven x-rays: skull, arms, forearms, thighs, legs, abdomen and pelvis. We’re holding off on the bone marrow biopsy, for now.

As I sat in the various waiting rooms for the third time in a week at Vanderbilt, I realized that I was in the presence of an unintended society of parents. No one was there because their children were healthy. In fact, quite the opposite. The vast majority of parents in the room were there because their children were sent for serious health issues. The tension was palpable. Nerves were on edge as the contradictorily playful sounds of cartoons belied the assumption that everyone was happy-go-lucky. Only, no one really was. Every once in a while a child would pass through who was happy — playing with toys, reading books. Other children bore the signs of having more life experiences than a child their age should have — bald heads, masks over their pale sun-deprived faces. A few have profound delays — mask-like faces, strollers and wheelchairs for nearly adult-sized bodies. Occasionally, Addie would chatter joyfully, but even she knew, as was evidenced by the tenth tube of blood drawn, and the eleventh x-ray taken, that something beyond her comprehension was wrong. But soon enough, the promise of a sticker and some pop beads at home would break the anxiety, and bring her back to laughter.

My new society was a silent one. None of the parents spoke to each other. We were content sitting in our own private purgatory while we contemplated what the future might hold for those whom we love the most. The only conversation starter I could think of was, “So, what’s wrong with your kid?” Not very appropriate. But I know we were all thinking it. We were too tired, too stressed, too embarrassed, or too worried to ask. Perhaps we all knew that it would be too painful to be asked the same question in return.

I would have killed for some free wi-fi.

As I sat there with my daughter, who only 2 weeks ago was a “normal four-year-old,” I contemplated that this very well could be our new normal. Our new silent society of unintended members, which we entered with the code: 315.9 “Developmental Delay Not Otherwise Specified.”

Bone Marrow Business and Biblical Blues

I got a call from the adoption physician this morning saying she had talked briefly with hematology/oncology (blood disorders and cancers) about Addie’s enlarged bone marrow. Though she didn’t have an answer from them, they recommended calling me and getting me in for an appointment, as soon as possible. So she wanted to schedule me for this coming Monday at 9:00 a.m. to discuss, well, she wasn’t sure, but she would call me later this afternoon.

Thanks a lot. Did I mention that I have to lecture today and it’s really hard to concentrate when the doctor is telling you that the cancer department is telling her that we need to come in as soon as possible to discuss results in person?

So after class today, the adoption physician called us back and said basically, they don’t know what’s going on, and they’re not sure if there’s anything to worry about or not. Her blood cell counts are normal, or were a month ago, but they want to recheck those and do a modified skeletal survey, which basically means lots of x-rays checking to see if this is an isolated finding, or widespread throughout her body. They’re not sure exactly what they are looking for, but they are looking.

We talked for a long time about how to know when to stop testing something when we don’t know what the abnormal result means. It’s a careful balance of not wanting to let something dangerous go unchecked and overtesting a variation of normal. She made an off-handed remark about people wanting full-body CT scans, but you typically find lots of little variations of normal and you’re never quite sure what you can overlook versus what needs attention. I said, “Well, actually, after yesterday’s tests, we’ve now made our $5000 deductible, so I figure, why not?” They are doing so many x-rays, which are not going to get to the bottom of her developmental delay, that why don’t we go ahead and do an all over scan because it seems like we’re eventually going to get there anyway. In the last month, we’ve done stool studies, blood work, chest x-rays, wrist x-rays, echocardiogram, audiogram, why not just shoot for the moon and finish it off? We have two more months left in the year, why not?

So she agreed that we would be aggressive with the medical mystery of Addie Rose until December 31, when our deductible resets, and then we’ll see where we are.

Basically, Addie’s bone marrow could be a sign of something ominous, or it could be nothing.

Now, the best news in all of this. The people who have the appointment after us at the International Adoption Clinic? Our friends that we traveled to and from the Congo with!! Woohooo! We’ll get to have a little reunion!

So where are Ken and I in all of this?

We do not think it was a mistake that we adopted these kids. Adoption is about God choosing our children rather than creating our own, and God does not make mistakes. We are upset at our agency for deceiving us because we were not prepared for kids their age and their developmental ability. They aren’t who we expected, but that doesn’t mean we have a single regret or love them any less. We’re just adjusting to new expectations and plans for their future — school, therapy, church, etc. Planning for a 6 and 8-year-old is very different than planning for a 4 and 5-year-old. It’s not bad, it’s just different.

There are aspects that make us sad, just as any biological parent would be sad if they discovered that their normal 4-year-old overnight became 3 years developmentally delayed. Do we love her any less? Of course not. But it’s still a loss for her, and for us. And it’s okay to mourn brokenness, I promise. It is not unBiblical, nor does it demonstrate a lack of faith, or a deficiency of trust in God’s plan. Similarly, I’m sad that I missed all of Palmer’s snuggle-with-his-mommy years. I get 3 fewer years to spend with him before he leaves home. I hit the teenage years really soon, and I won’t have 12 years of trust built up with him.  How would you feel if you went to sleep tonight and woke up to find that 3 years had passed while you slept? It would be okay to mourn those lost years, I promise. It is not unBiblical, nor does it demonstrate a lack of faith, or a deficiency of trust in God’s plan.

In fact, Matthew 5 in The Message says:

 You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule.

“You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you.

“You’re blessed when you’re content with just who you are—no more, no less. That’s the moment you find yourselves proud owners of everything that can’t be bought.

“You’re blessed when you’ve worked up a good appetite for God. He’s food and drink in the best meal you’ll ever eat.

“You’re blessed when you care. At the moment of being ‘care-full,’ you find yourselves cared for.

 “You’re blessed when you get your inside world—your mind and heart—put right. Then you can see God in the outside world.

“You’re blessed when you can show people how to cooperate instead of compete or fight. That’s when you discover who you really are, and your place in God’s family.

“You’re blessed when your commitment to God provokes persecution. The persecution drives you even deeper into God’s kingdom.

“Not only that—count yourselves blessed every time people put you down or throw you out or speak lies about you to discredit me. What it means is that the truth is too close for comfort and they are uncomfortable. You can be glad when that happens—give a cheer, even!—for though they don’t like it, I do! And all heaven applauds. And know that you are in good company. My prophets and witnesses have always gotten into this kind of trouble.

Those who go through difficult times are uniquely blessed in that they get to experience God in ways that they never would if life was normal. And we are. God’s grace is more than sufficient. We have not had a single regret about our kids’ adoption, nor in our God. We have not lost our hope, or our joy, or our dependence on God to accomplish whatever He deems to be the best plan for our lives.

Today’s Appointments

Our ENT audiologist appointment went well this morning. We took Addie to the place I used to work, and loved. I was able to watch Addie in the sound booth, and give pointers for dealing with her distractability. Her results came out a little inconsistent, but most resembled mild sensorineural hearing loss. The audiologist recommended I practice with Addie on what she’s supposed to do during a hearing test, and return for another test in a month.

I thought since the loss was mild, not even worth putting a hearing aid on Addie, that there was no real point in repeating the test that soon. Dr. Fortune agreed. He thinks the mild hearing loss, in light of her medical history, is expected.  He recommended following up in a year to ensure it’s not getting worse. He felt like it didn’t cause her developmental delays, but was part of the overall picture.

This afternoon was Addie’s echocardiogram at Vanderbilt. While we still don’t have final results, I watched the echo, and talked with the tech afterwards about what we saw. Of course, she’s not allowed to give me results, but she did drop some pretty good hints. She told me the cardiologist had already glanced at it as we were getting ready to leave and the indication that we were sent there for (an enlarged heart) should not concern me. I asked her if the appearance of the enlarged heart was due to poor positioning of Addie during the original x-ray, and she said that I sure sounded like I knew what I was talking about. (It was an AP x-ray, rather than a PA.) Vague, but positive.

We haven’t heard anything about the enlarged bone marrow, but knowing her heart is normal (I’m pretty sure) makes me feel much better about her bone marrow. Hopefully we’ll hear final results about the echocardiogram and from hematology/oncology about her bone marrow tomorrow and have some next steps.

We’re very thankful for the good news about Addie’s hearing, although still wondering  if there is any specific reason why she is so delayed, and if there is any part of her delay that we can fix as we look at getting her into elementary school. We’re even more thankful that we don’t have to add an enlarged heart to her list of problems.

Thank you all for your outpouring of love and prayers today. We felt them.