Diagnosed… And then Rediagnosed… And Then…

In 2010 we saw an adorable picture of a little girl with a sucker in her mouth! She immediately caught my attention. Her eyes looked straight into mine and they were calling out for a Mommy and a Daddy. I read her short bio and the word cancer was in there. I immediately said to myself, “Nope, can’t do that…” and then I wondered who would be the family that would step forward? I prayed that someone would bring this beautiful child home.

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Fast forward 6 months, we were in process for our Luke but we had an unsettled feeling. There was another child waiting BUT who was it? We looked and looked but our child was nowhere to be found. We waited and prayed and then there she was… little Arizona with the sucker in her mouth. We prayed about it and that evening when hubby came home he uttered the exact same words that God had placed in my heart that day. “She needs to come home!”

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We knew very little about Abby’s situation other than she needed blood transfusions every 6 weeks and that she was diagnosed with MDS, which is a preleukemia diagnosis. I asked her orphanage to transfuse her right before gotcha day so she would feel as good as possible- they obliged! They were so happy she had a family and would have a chance at life. As the three weeks in China went by Abby slowly faded. Her coloring changed to a pale yellowish, her lips were no longer pink, she was tired and a bit ornery. I could tell she was not feeling well.

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When we got home we went straight to the Pediatric Hematologist. Her hemoglobin was about 6 and she was wiped out. She was afraid and had no idea what they were going to do to her. She cried and moaned in fear. It was a very sad and hopeless cry… She did not care what the translator was saying- she had her memories of what it was like in the hospital in China – all alone for many days (5-7 days), getting a transfusion… That is how they did her transfusions in China. Nobody stayed with her, she was an orphan and they could not spare the staff or the money to have someone be there for her, she was all alone and scared.

Our Hematologists quickly transfused her (it’s about a 4-5 hour process) and once again the color returned to her cheeks and she had a smile on her face. She was surprised that I stayed there and didn’t leave her side. She was surprised that she got a toy and that we colored, painted, played with toys, looked at books and watched TV. She was thrilled when we left together and when we went home together!

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Once Abby was home we found out she needed to be transfused every 3-4 weeks.

Abby has been home now for 2.5 years. Throughout this time she has had her diagnosis changed 6 times.

1. It started out as MDS (Myelodysplastic Anemia) in China.

2. It was confirmed as Myelodysplastic Anemia at our local University and Congenital Sideroblastic anemia was added.

We immediately had an appointment to discuss a bone marrow transplant for Abby. It was planned to be done as soon as we got the excess iron out of her body.

This is called Chelation and it is necessary because whenever someone is given another persons blood their body is unable to breakdown and excrete (pee out) the other donors iron so it is stored in the body. No big deal if you have one or two transfusions BUT those having regular transfusions have an extremely large amount of extra iron that is store in their body. This excess iron can be stored in the liver, pancreas, heart, brain or other major organs. Abby’s was stored mainly in her liver and pancreas (if you have to pick these are the best 2 places to have it stored).

We had a plan and we were good to go! I prayed about the BMT (bone marrow transplant) and how our large family would cope with it. It is not a procedure to take lightly. It can be life saving as a last effort to help a patient/child but the statistics are not as favorable as we would have liked. With prayer and counsel we decided we would only do it as a last effort to save Abby.

Our Hematologist studied at Boston Children’s and wanted to send Abby’s blood there for testing so we agreed.

3. They determined she did not have MDS and that her diagnosis was Congenital Sideroblastic Anemia.

WOW! We were shocked and thrilled! Praise God! This was such great news!! There was a weight lifted off our shoulders! The BMT was looking less and less necessary!

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It was also determined that Abby’s chelation process was going very well and the excess iron levels were decreasing at a good rate! Abby wore a backpack containing medicine in it. She had an IV in her port. For 48 hours every 2 weeks she did this. After 6 months she no longer had to wear the backpack and have with the IV. Now she drinks orange juice with exjade in it, every morning. She is a trooper and doesn’t complain.

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Six months passed and it was time for another round of testing.

4. Once again our local University said she had MDS. Our hearts sunk and I began to feel fearful. I lost sight of God’s comfort and HIS capable guidance and I found myself teary and weakened.

Then, a sample was then sent on to Boston Children’s again.

5. Once again came back to us with the diagnosis of Congenital Sideroblastic Anemia and said that it was NOT MDS. We celebrated and exhaled!

Soon after that we had a proposition. Boston Children’s hospital was conducting a study and asked if they include Abby’s blood sample. We agreed!

Months passed and we forgot about it.

At one point we said to our Dr. “Medicine seems to change so often. We are going to wait to see what other research is out there and then make decisions on how to best treat Abby’s condition.” She looked at me and said- “Sadly, this is so rare there is no other research. There may not be another person that has what Abby has and if there is we may never find them.”

Gulp, that put it all into perspective.

We knew who was in control of all of this- our God. Our adoption of Abby. Her health journey- it was all HIS story, not ours. Whatever decision we may think we had were for HIM to decide. We were comforted knowing HIS hands were all over this…

And then we got the phone call and heard what diagnosis #6 was…

6. Jean, this is Abby’s doctor, “We have some interesting news from Boston.” I have goosebumps and tears as I type!

Abby has Beta Thalassemia. She has a rare form of it that presents itself a little differently than the typical Beta Thal. But they were able to find a mutation on the globin gene and she went on…

In this same study the Dr found one other little girl with this mutation so he decided to check the rest of the samples and see if any of them also had this mutation. Abby’s was the only other one that had it.

About now you are wondering “Hmm, is this good news or bad news?

This is GOOD news!

Abby does not have MDS!

She does not need a BMT.

She is not preleukemic!

We are now able to follow the Thalassemia protocal. We have some answers and direction on how to care for her!

Abby is doing wonderfully now! She is healthy and happy! We are so thankful she is home!

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Children with Thalassemia and other blood disorders need to come home. There is a shortage of blood in China and the orphans are the last to get it… Look at the difference in Abby! Look how much she has changed and how healthy she is now! We have seen a miracle unfold right in front of our eyes! Please consider adopting the children with Thalassemia and other blood conditions. They need to come home in order to live…

 

 

Cora’s story

Twenty-three years ago she made her mother-in-law angry. Cora had just given birth to her first child, a daughter, and the news did not bring any celebration into the household.

Her husband’s mother was angry; the older woman fumed and refused to hold her new granddaughter. As the weeks past she finally agreed to hold her daughter-in-law’s child, but even then she refused to be content.

Cora’s husband was the only son, the youngest child with four older sisters. He was the family’s only hope. They were farmers, always had been, and a son was so important.

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When Cora learned that her baby was a girl she grieved as well, but also rejoiced at the life she had given birth to. Her darling daughter was a precious gift… but she felt guilty.

If only she had been able to give her relatives a son.

They were not well-off at all. In fact, they were poor. Times were very hard and they couldn’t afford to have another child just yet. And what if they did and she gave birth to another girl? What would they do then?

Four years later, the day after celebrating her daughter’s fourth birthday, Cora and her husband left town. They bought vegetables and grain from the local village and went to sell it in the next town over. At least, that’s what they told everybody. In reality, Cora was beginning to show signs of being pregnant again and they couldn’t risk her being seen in the village. Second pregnancies were not allowed.

Pedaling the three-wheeled cart, Cora’s husband took his wife and the new life growing inside of her out of town. They had to leave their beautiful little girl with her grandmother. The sweet birthday girl didn’t know why her parents were leaving and grieved deeply while they were gone. There were no phones, no internet or skype; there was no way to stay in touch during the next 7 months.

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Then the time came for Cora to give birth. It was a boy. Her husband raced home to his mother to tell her the news. When she found out that she was the proud grandmother of a healthy little boy, she couldn’t keep back the tears. Cora came home soon, and over the next few years their family scraped together the money to purchase their son a Hukuo (close to a SSN, required for children to attend school etc.).

Life is easier now, Cora said. They aren’t struggling like they used to be and her motherin-law and daughter have a special bond. She doesn’t know what they would have done if the second pregnancy had been another girl.

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I don’t think she wants to think about it.

For the past thirteen years Cora has worked as a nanny, caring for children whose parents made the hard choice, because of circumstances we can never fully understand, to give them up. All of the children that she has looked after have had some sort of special need.

She is one of the most dedicated, loving and caring nannies that I have ever seen. She is gentle, patient and tender. She sings and prays for the children. I remember one week when we had a little baby girl who was really struggling – fighting for her life, really – and was always fussy. I was often singing and praying out loud for her, as I cradled this baby girl in my arms. And Cora was, too.

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I know that, as adoptive or pre-adoptive parents, many of you wonder who is a part of your children’s life. Who is loving on them? Is anyone? Do the caregivers actually care?

I hope that this story shines a tiny gleam of light onto the unknown world of caregivers in China.



Somewhere to Run

In my adoptions circles, there is a little bit of a running joke about all the things that start going wrong once a paper chase and the commitment to adopt a child (or children) begins. Somewhere along the journey to China, an adoptive parent can guarantee that an appliance…or three…will break, the car will need repairs, a member of the family will get sick, a storm will hit, their basement will flood, someone will say something discouraging, and on goes the list. In those early stages of the adoption, we call it as we see it. This is spiritual warfare and we have an enemy prowling around seeking to devour adoptions before they even get off the ground.

Unfortunately, the spiritual warfare doesn’t end once the adoption is finalized. It lurks in the background seeking opportunities to hurt our testimony and discredit God’s faithfulness. In fact, adoptive families are one of the most under attack groups of people I’ve ever come across. In talking with adoptive parents, I hear so many of them saying the same thing to me over and over again. The same things I’ve said to myself at various points in the journey. I feel so alone. I feel like I’m failing. The people I counted on for support aren’t supporting me. My social worker didn’t tell me this part would be so hard. The stress is getting to my marriage. Our extended family doesn’t understand what we’re going through. But oftentimes we aren’t as quick to see the see the spiritual warfare on this side of our Travel Approval.

Adoption is a miracle. The transformation of a child who fears their adoption parents on “Gotcha Day” into a child who runs laughing into their parent’s arms is a beautiful sight to behold. The difficult attachment journey…whether it’s a child who isn’t attaching or a child who is anxiously attached…is a journey worth making. Watching two children bearing completely different genetic codes become as “real” as siblings can be is breathtaking. But adoption is also hard. When a child from a “hard place” joins their new family, they bring their trauma with them. Anytime a new child joins a family there are adjustments required, but even more so when a child joins a family through adoption. That’s just the way it is. It’s normal and to be expected. But it does put a strain on the family, oftentimes creating a very challenging season. A season that makes adoptive families feel alone. Unsupported. Like failures. Overwhelmed. Misunderstood. And unable to reach out for help for fear of being judged. Because not everyone can understand that the greatest joy of your life can also be your biggest stressor. The natural response during those seasons is to pull away from anything that isn’t necessary for survival…all the while not realizing that we need so much more than that stack of books our social worker let us borrow.

It never ceases to amaze me how an adoptive family…mine included…can be in the throes of spiritual warfare without even realizing the enemy has attacked. Especially in the first months (years???) home with a child. While this season is full of new joys, obstacles overcome, and milestones achieved it is also a season in which the adoptive family is very vulnerable…spiritually, emotionally, and physically. So many other things scream for the family’s attention that the most important thing quietly slips away.

If yours is a family that was called by God to adopt, and that has a very God-centered testimony leading up to your adoption you need God more than ever once you’re home. My theme verse for our first adoption was “The one who calls you is faithful, and he will do it. –1 Thessalonians 5:24”. I clung to that verse every single day of every single wait. And it’s true. God WILL do it. He’ll get you to your child. And once home, he’ll get you through the sleepless nights. The doctor’s visits. The bad news. The hurtful comments from people who are supposed to love you. The stir-crazy boredom induced by “cocooning” your new child. The questions that you don’t have answers for. The lie that you’re just not quite cut out for this calling. But the place he’s found is the place that adoptive parents so often forget to visit in our need to survive…the foot of the cross. And when we’re in those hard seasons that’s where we need to run. To the one who called us. To the one that chose our child(ren) for us. To the one that is grafting our family tree according to his own unique plan. He is faithful and he will meet our needs right where we are. No one else may understand what we’re feeling or experiencing, but our creator knows us better than we know ourselves. When we need somewhere safe to run, his arms are open and waiting.



walk, don’t run.

I’ve never been a runner. Heck, the nickname given to me in high school was “Clyde.” As in Clydesdale. Yeah, the horse. The one who trots along through life. But while I may not have been a runner, I walked fast! And with purpose. Even now, I somehow manage to leave my poor husband in the dust. At the mall, I realize he’s several steps behind me. My children consistently ask me to slow down when holding my hand. Because I’m my mother’s daughter and well, she walks with purpose too. Quickly.

So in the physical sense, I’m kinda power walking through my day. Multitasking. Spinning plates, juggling balls. But in a spiritual sense, I’m a runner. A serious runner. God gives me a task or a conviction or a plan and y’all, I’m all over it. Like they taught me during our three years in Texas, I’m “on it, blue bonnet.”

And you wanna know something? I don’t believe God calls us to run all the time. Run away from temptation? YES. Run to Him? Always.

But in the everyday, mundane? Friends, it’s a walk.

Have you ever contemplated how many Scriptures encourage us to walk? Verse after verse. Passage after passage. Walk.

This year in particular, has been a struggle between walking and running for me. Which is so funny since we aren’t adopting right now and I, like some of you, am guilty of trying to run like mad through an adoption!

Our first son, adopted at age 3, struggles with comprehensive speech delays as well as some learning delays. I’ve posted about him a few times before in regards to these things. But as I was recently sitting in the dentist’s waiting area {four children = cleanings X four twice a year…ugh!}, I read this article. And it reminded me again just how much these babies endure because they are born too early.

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Three of our children were preemies. Joel was the most significant at 28-29 weeks. He experienced several surgeries as an infant due to a perforated bowel {very common in preemies} as well as Reactive Airway Disorder because of immature lungs. He was on a vent for several months which seems to have given him some level of sensory issues too. And while I’m amazed at the level of care he was able to receive in the country of his birth, it’s clear that these things, coupled with being institutionalized until he was three years old, have conspired to set him up for some hard days as far as learning and schooling goes.

And in like fashion, I wanna RUN. If he’s only reading at an F level, I want to blaze through and get him to an H. “Forget G! We can skip it! Let’s just read H books and see how you do!”

But many times with our babies, who’ve come to us with delays, it’s a walk, not a run.

And then there’s our Gabe, {AKA, the Little Prince, my Gabey Baby}, whose urological/genital defects were so extensive that he will endure the 6th surgery on his nether regions alone over a two year period this October. MY plan was to shore this up in two surgeries. Which is laughable to consider now. And the fact that Gabe’s hypothermia at abandonment has contributed to terribly poor skin and healing quality, doesn’t at all help my need to RUN. It has caused the opposite to happen.

With Gabe, we seemingly crawl.

And I see this with so many other adoptive parents {and bio ones too of course!}, who love their babies more than life and they want this stuff to be OVER. We want to be DONE. We want our children to be CHILDREN and not in the hospital or in pain or unable to do things that others can easily do.

But again y’all, it’s a walk.

He calls us to a walk. Our kids don’t need sprinters. They need walkers. Consistent, steady, faithful walkers.

Oh, sure, I’ve got my tennies tied and my hair in a ponytail. I’m ready if a run is ever the best option. But for now, I’m on a walk with Him. And that’s more than okay. Because He’s God of the walk.

“And I will walk among you and will be your God, and you shall be my people.”
Lev. 26:12

 

10 Tips for a Successful Adoption Yard Sale Fundraiser

After weeks of planning and organizing taking over a good portion of my time, we hosted our yard sale fundraiser on Saturday!  I know many, many, many adoptive families have done yard sale fundraisers with great success who can also give you awesome advice.  But for what it’s worth, here’s my 2 cents on planning and executing ours:

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1. Start early.  Tell everyone about the yard sale and start collecting donations from family and friends 1-2 months ahead of the planned date.  I made a Facebook flyer that advertised the yard sale and also asked for donations.  We received donations from many people that we don’t keep in touch with on a regular basis, and they were thrilled to support us in this tangible way!  Many people have clothes, toys, books, and household items to donate.  Some have bigger ticket items like furniture that attract attention.  Accept it all graciously, you never know what is going to sell!  More donations = more sales.  Don’t be afraid to keep taking donations, even the day of the yard sale!  Over 25 families contributed and our 2-car garage was filled.  We sold a lot of the donations.  I know space can be an issue, we are fortunate enough to have a garage where we stored and sorted everything.  I would suggest having people bring donations to you.  In trying to make things as easy as possible for our contributors, we did many pick-ups and it was very time consuming – I would do that differently in the future.  During the week prior, everyone brought donations to us and that was so incredibly helpful.

2. Ask for prayer warriors.  This was so important!  I asked people to pray for the weather starting several weeks ahead of time and the Lord listened.  We had a not-so-nice looking forecast several days before, but it completely cleared up and we had a super awesome day.  We also asked for people to pray for the event’s success, and again, God totally heard us.

3. Organize your donations.  Everyone has their own way of organizing, but I’ll share what worked well for us.  We organized items by type, and then by price (also by size for children’s clothing).  For example, all of the toys were grouped together in my garage, but were sorted by price in larger boxes.  The kids actually helped me sort the toys by price, and it was really fun to have them (and their friends) help!  Children’s clothes were also sorted by gender and size in large bins.  We hung adult clothes by gender with borrowed racks and donated hangers (Old Navy and Macy’s).  This made set up easier because we marked tables by price, starting with $1.00.  Then when all of the donations were brought out, all we needed to do was get the $1.00 toys on that table, $2.00 toys on the next table, etc.

4. Ask for help organizing and tagging.  I would have been completely overwhelmed if I had organized and tagged by myself.  Although I did organize a lot of the clothing and toys myself as we were collecting donations, the bulk of the organizing/tagging happened the week of the yard sale.  When sorting, we didn’t keep some of the donations that were very stained or in very poor shape.  We mass-tagged everything – all children’s clothes were $1.00 a piece, all books were $1.00 for hardbacks, $0.50 for softbacks, all small frames were $1.00, etc.  When sorting toys and households, we tagged by organizing in large boxes labeled with a price – that worked out extremely well.  We also priced everything aggressively to sell.  We were going more with selling quantity over getting the best price (and we didn’t want to pack everything up to bring home!).

5. Advertise everywhere.  Seriously.  We had a strong & steady stream of people coming until about 11am, and they started showing up at 6:15am!  (Advertise “no early birds” if you don’t want that to happen – lesson learned.)  We raised so much money in just a few hours partly because of the sheer volume of people coming through.  I posted a yard sale fundraiser flyer to Facebook and asked people to share it (make sure the flyer is made “public” so even people you don’t know can see it).  It was shared 67 TIMES the few days prior to the event.  That was huge and I was in awe of how supportive people (many whom we didn’t know) were!  It was a nice surprise to see many, many friends who had seen the Facebook flyer!  I advertised on Craigslist many times starting 2 weeks prior, making sure to explain that it was a 25+ family yard sale with loads of stuff. I did the same on every other yard sale website I could find when googling for them.  I did not advertise that it was a fundraiser on those venues – I was more worried about simply getting people there.  Also, our friends advertised for us on all of the local mom/totswap groups and Facebook yard sale groups for us.  Lastly, we put signs up at the big intersections with bright neon pink poster board and large black lettering.

6. Pick your location wisely and organize your yard sale efficiently.  Although it was a good amount of extra work, we hauled everything to the entrance of our neighborhood, which is on a major road.  We put the bigger items that would attract attention on the main road and it worked.  Not only did we sell almost all of those items, a lot of people stopped by simply because they drove by and saw the yard sale.  I’ve heard of other families hosting yard sales in parking lots (with permission of course!). Chose what you think would be best for where you live.  It is worth the extra effort if you don’t think hosting at your house will get a lot of traffic, trust me.  We also organized all of the items in a logical way, starting with what we thought would sell most.  Bigger items and clothes were on the road so people could see them, and then we had a long row of tables set up (borrowed from family and our church) in order of price and type of item.  We started with the toys, a $1.00 table, $2.00 table, $3.00 table, $4.00 table, and $5.00, then a few miscellaneous tables with different items, and then household items, also organized by tables/price.  We set up a bake sale and drinks at the very end, covered by tents (also borrowed from a friend).

7. Ask for help the day of the event.  A lot of help.  And take care of them while they are helping you!  We started setting up at 5am for a 7am yard sale.  That seemed to be good timing.  We had several friends with trucks and family members here at 5am to help us load and haul everything to the yard sale site, and then had other people join us later to help with taking payments.  We also had Grammy spend the night before to take care of the kids in the morning.  I pre-made breakfast sandwiches to be popped in the oven in the morning (by Grammy) to feed all of our amazing volunteers.  We also had coffee, water, and lemonade available for them (Grammy was also on coffee duty).  I purchased bright neon orange shirts ($3 each) for our volunteers who were collecting payments.  This made our “staff” easy to spot, and we gave everyone free reign to haggle with customers as they saw fit.  Some of our friends brought aprons to hold money, others (including me) just used pockets.  DH carried a backpack.

8. Take credit cards and advertise it.  You can get a square reader for free and then you pay 3% of sales.  We had $200 in credit card sales, which may have been missed had that not been available as a payment option.  And it only cost us $6.00.

9. Sell baked goods, coffee, water bottles, and lemonade.  Although selling these didn’t bring in a ton of funds, we’re guessing we probably raised about $40-$50.  It was also a great opportunity to chat and share our story with customers who didn’t find anything at the yard sale to purchase.

10. Be willing to make deals.  That is, after all, the art of yard-saling.  Part of our deal-making came from the result of tagging in volume.  For example, there were some clothing and toys that we probably could have gotten more from if they had been individually tagged, but we just didn’t have time.  And especially as the day went on, we made even more deals simply so that people would take some of the more difficult things to sell.  Having said that though, don’t allow yourself to get intimidated by professional yard-salers.  Some people can be very forceful and we definitely said no to the more ridiculous haggling (especially earlier in the morning).  All of this paid off in the end.  We sold almost all of the toys, as well as all of the furniture and bigger items that we didn’t want to bring back.

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Some of my adoptive family friends have had great success with a “donation only” yard sale and we seriously considered doing this.  But knowing our area, we ultimately decided to tag the items.  We still shared our story openly and many people felt moved to give more.  One dear, sweet woman from our old church gave me $40.00 for $12.00 worth of items, and I heard several other similar stories from our awesome volunteers who collected money too.  The yard sale was such a wonderful way to have others partner with us in many different ways. The amazing people who donated items and contributed baked goods, our prayer warriors, the precious volunteers who helped us organize, set up, and host the yard sale, and the customers who purchased donations all partnered with us! Hundreds of people worked together to help us raise $1900 ($2000 with an anonymous $100 donation) to help bring home our son.  We still have a lot of nice children’s clothing leftover also, so we are going to consign them and hopefully raise a few more hundred.

Although it was a ton of work, this yard sale was such a huge success!  Raising $2000 in just a few hours is overwhelming!  Our God is so good!  I had a secret goal to raise $1000, not really sure what to expect.  But God’s plans were so much bigger, doubling what I hoped to raise.  We considered doing another yard sale day, but ultimately decided against the extra effort and time.  I do wonder how much more money we could’ve raised if we did that though!  I know several families who have raised $4000-$6000 doing multiple-day yard sales, so if that’s an option for you, I’d highly consider it!  I have been so humbled by this experience and am eternally grateful for how He used so many family, friends, and acquaintances to come around and support our family!



Not Bad For 3 Months

It’s only been three months, but she looks like a different child. I can hardly believe how Alea has transformed in the 90 days since she joined our family.

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She has gained 4 pounds, for one. She’s developed a bit of a pot belly and pudgy little cheeks. Alea’s such a little dumpling in more ways than one now. This morning I realized she no longer fits into the 3-6 month clothing she was in the first few weeks we had her… nor does she really need the 6-9 month clothes she’s worn since coming home. No, our 19 month old is solidly in 12 month clothing… not bad for 3 months.

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She has started vocalizing more and more, and she’s demonstrating understanding. My favorite is asking her for a kiss and getting one of those open-mouth, slobbery baby kisses planted solidly on my cheek. Alea has microtia and atresia, so she doesn’t have her right ear or ear canal. In addition to her hearing loss caused by this birth defect, Alea spent the first 16 months in a non-language-rich environment. (With nearly 30 cribs in her room and only a few caregivers, there isn’t a lot of one-on-one conversation happening.) On top of all that, she’s changing languages. It makes for the perfect storm of speech delay… When she came to us, she was only grunting. Now she’s babbling, saying mama, pointing at what she wants and having “conversations” in her baby talk. Our speech therapist told us the other day that she’s made about 6 months of language progress already… not bad for 3 months.

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She knows who we are. I’m starting to see more and more signs that she trusts us above all others… Just today in my Bible Study, I went to the restroom and left her with my friend for a couple of minutes. She cried when I walked away and as soon as I came back she eagerly came back to my lap. That’s a success in my book. She isn’t very interested in being held by people she doesn’t know, and she checks in with us when she’s playing or exploring. She seems more comfortable in our home now and she won’t go to sleep without us rocking her. She’s learning what it means to have a Mama and Baba and JieJie and not just Ayis and cribmates, and we’re learning what it means to have her in our family… Not bad for 3 months.

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She’s getting stronger. When we met her, she could hardly support her weight on her legs. She’d try to pull up on things, but she was incredibly unstable and prone to falling (literally) flat on her back, banging her head on the floor. Now, she’s almost walking… in fact, she could do it if she would just work up the courage to let go. (I think she’s smart enough to realize that if she falls while walking she gets hurt, so she’s unwilling to risk it yet.) She’s getting more curious. When we met her, she would cry if she touched grass or a plant. Now she crawls through the yard. She likes ice cream, solid foods, and our dog, all things she wasn’t interested in when we met her. She regularly empties out my cabinets and eats the dog food, not to mention crawling into or onto anything she can. She’s gone from seeming like a baby to a full-fledged toddler since we’ve come home… not bad for 3 months.

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Our adoption moved fast because Alea had lots of scary-sounding diagnoses in addition to the microtia and atresia, including a subarachnoid hemorrhage and hypoxic ischemic encephalopathy (HIE). She wasn’t an easy baby to place, so we were matched much earlier than we expected when we decided she was a good fit for our family. Those labels are terrifying, and though what we DID know about her didn’t seem to back up those diagnoses as being accurate, we certainly walked into our adoption with lots of unknowns as to how it would all play out. There are still many unknowns, as we’ve elected to put-off some evaluations to give her more time to settle into our family, but at this point all signs point to her being a perfectly healthy toddler with moderate hearing loss whose developmental delays can all be explained by institutionalization rather than underlying causes. We have no reason to think she won’t fully catch up, given the support and time she needs. And that’s not bad for 3 months.

alea1

alea6



The adoption process isn’t really the hard part

Picture it—a roomful of adoptive and preadoptive mothers. It’s a little quiet, and you’re in charge of getting some conversation going. Likely, the easiest way to start a buzz is to open up the floor to (1) odd things people have said to you about adoption or (2) the red-tape, long wait, and high costs inherent to the adoption process. Hours later, all those women will be in the same spots they were all night and their husbands will be texting them asking them if they’re ever coming home.

I know about having a hard adoption process. Ours started years before we ever signed any papers, with infertility and multiple miscarriages and heartbreaking losses of babies I’d never hold in my arms. After the healthy delivery of three babies, the process officially started, and we found ourselves working a part-time job in the field of paperwork, with money leaving our account with every paper we completed. It seems so long ago now, but the memories remain of racing to the post office before they locked their doors, fighting rush-hour traffic to make our appointments for fingerprinting in the city, and fighting with legos and puzzle pieces and the children who left them under foot before our social worker showed up in some sort of vain effort to show her that good housekeeping qualified me to be a good parent. Then, when all the chaos abruptly ended with the hand delivery of our dossier (aka. our lives and hearts in two dimensions and bundled into a file folder), we waited. And, we waited. Then, we questioned and waited and reconsidered and waited. Two years later, when we realized we’d be grandparents before we would have our Chinese daughter, we joined the special-needs program with fear and trepidation. We thought the adoption process was hard before that; then it got about 10x harder. Looking at files that represented real children, facing our own humanity and ability to parent a child with varied needs, saying yes to a child and then turning around a week or two later and saying no. It was all hard.

But, here we are, home 4 years. And, all that hard that I remember are only memories. I can talk about those memories readily in that room of adoptive moms and contribute to that buzz with the rest of them. But, when I do, I want to take the conversation a step further because adoption isn’t over when you sign that last paper or stand before a judge or set foot on American soil.

kids

I saw this image in my Facebook newsfeed one day, a quote put with a beautiful image meant to warm my heart, posted by a large nonprofit supporting adoption. I saw it. I read it. And, all I could think was this: Seriously? Everything about the adoption process is hard except loving the child?

Please tell me I’m not the only one who isn’t feeling warm fuzzies.

I know the adoption process is hard, but loving my child selflessly for the rest of my life is a whole lot harder than a few months of paperwork and a few years of waiting. She needs a lot of love, and I want to give it. I truly do. But, loving doesn’t come naturally to me; it’s hard. In fact, it’s a battle, not against an unloveable child but against my own selfishness. Add to that how children who need the most love often ask for it in the most unloving ways and I’d say that love the way I believe love is defined is all about hard.

When she stumbles into my bedroom in the morning with her hair awry, rubbing the sleep from her eyes, I want to breathe her in and keep her tightly snuggled in my arms. There’s my warm fuzzies, people. But, my motherhood seems to be more in the trenches than being cuddly in the stillness of morning. Most of the time, I feel like I’ve put the black on my face and am ready for the task. But, there are times—more than I care to think about right now—when I feel just plain done and wish there were an app for that.

Parenting is hard; adoptive parenting is even harder as you simply cannot coast and get away with not being intentional and purposeful as a parent. That’s not a bad thing; intentionality and purpose are good things and can keep you moving on the right path, but the task can be harder. I’m sure I’ll still use the listen-to-this-crazy-thing-someone-said-to-me and I-cannot-believe-we-need-a-notary-for-a-notary as ice breakers. Yeah, they’ll get people talking. But, let’s not stop there, and let’s not keep silent about the trenches and lead people to think it’s all rainbows and lollipops. Let’s be honest with each other and talk about the rest of the adoption process—navigating what wise adoptive parenting looks like for our families and for our children and loving unconditionally even when we feel like we have nothing left to offer to meet what seems like never-ending needs. That’s #whatadoptionmeans for this adoptive mama, ya’ll.

#whatadoptionmeans



whatever it takes

Before there was a picture, my heart held an image of you. I penned my name on the adoption application, and your life was written into my heart. “Whatever it takes”, took on new meaning. The forms, the hoop jumping, the check writing, the calls, the fingerprints, the background check, the study of our home, and the steady push toward a hundred unknowns. A list was given of what it would take to be your family, and we checked it off.

Soon, a picture of little you appeared, and oh how I knew. I’d do whatever it took to get to you.

Whatever the obstacles. Whatever the red tape. Whatever the wait. Whatever.

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In China, “whatever it takes” was all new once again. My arms felt the weight of you with your sad eyes, raging fever, infection, no appetite, terrified sobbing, list of medical needs, bag of medical supplies, and wall around your heart. No idea what being your mommy would take, or IF I could do what it would take, I could only do whatever the moment, whatever the trip agenda, required.

Now home, we’ll trek forward with “whatever it takes”, minus the handy checklist.

I’ll simply take care of you. I’ll adjust my days, learn nursing techniques and juggle your appointments with your siblings’ schedules. I’ll creatively battle your veggie aversion and sneak probiotics into your sippy cup. Trusting new instinct, I’ll call the nurse when a low fever feels like something more.

I’ll research and fill my notebook with questions for the doctor, seek specialists, and humbly ask friends to babysit. I’ll check my watch in waiting rooms as I fill out more new patient paperwork, marking “unknown” under family history. I’ll drive to another state for an expert. I’ll add edema (swelling) and febrile (fever) to my widening dictionary of medical jargon. I’ll do pre-op, post-op and listen to discharge instructions. I’ll fill and refill those prescriptions.

I’ll wake another day and let you follow me from room to room because you feel safer with me in sight.

I’ll hold you a bit longer than my arm wants to. At the sound of your cry, I’ll stumble into your bedroom at 1AM. I’ll hold you during another church service because you panic at the sight of a childcare worker.

I’ll do a daily “lovie” wash so comfort awaits. I’ll smile at you and pull you into my lap when I’d rather have a moment to myself.

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No doubt I’ll falter. Selfishness will win daily. I’ll raise my voice and grumble. Hopefully though, my heart will refocus and submit to the gift of being your mommy.

If it is what it takes, I’ll remodel my world again around naptime and strollers, tantrums and diapers, board books and fat Crayolas.

With every new hospital ID bracelet, every IV insertion, and every scan or x-ray, tears might roll and my knees might tremble, but your little hand can rest in mine. When that operating room door closes with your daddy and I on one side and you on the other, you’ll still not be alone. I’ll stay on my knees for you, surrendering you over and over, always hopeful. And when “over it” is how you feel, I’ll feel it too.

You’ll need me medically, academically, emotionally, spiritually, physically, and behaviorally. It’s too much for busy, fragile, small faith me. My head spins trying to plan. Likely though, God will keep requiring me to release my grip. I’ll want to take control and He’ll remind me that it’s not mine to take.

My passport has a China stamp now, but I’m still searching our adoption journey suitcase for an elusive next steps checklist. Probably for the best, because if I could glimpse ahead, fear would spill in, I’d take my eyes off today and retighten my grip. So, I’ll grasp only for whatever it takes to love you best on THIS day.

At every intersection, I’ve learned that the Lord will meet us on the path, holding a lamp that usually shines ahead just enough, handing out peace that surpasses understanding and providing immeasurably more than I knew to ask for. Whatever it has taken, He has provided.

So, girl, with a heavy dose of faith in a sovereign over all things God, again, I’ll fight for you. I’ll fight with you. I’ll hope. I’ll blow bubbles for a smile. I’ll sing “Jesus Loves Me” in your ear at doctors’ offices. I’ll find a band aid. I’ll press cookie cutters into Play-Doh.

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I’ll submit to a stretching of my faith, my pride, the capacity of my heart, and the limits of my strength. It turns out that doing “whatever it takes” for you, means taking my life apart and rebuilding it, refined. Better.

I’ll advocate. I’ll be your voice. I’ll love you with all that I am. I’m all in. One day at a time.

Whatever it takes.



Bamboo Project Update

Today is a very special day… in a few short hours, the first of the Bamboo Project children will be in the arms of her FOREVER family! I’ve gotten to walk along side this lovely family from Georgia from nearly the start of their journey. Let me tell you, they are MORE than in love with their little one! God has truly ordained this precious heart and her extra chromosome into this amazing family. I’m SO STINKING EXCITED for them today and all the days that lay ahead.

This story will be repeated this time next week too, as a second Bamboo family just got word they are traveling this Wednesday! (Super short notice, just like with us!) This Michigan family is an experienced adoptive home, but this is their first chromosomally enhanced child… oh, what an adventure lays before them!! This little girl is already so VERY loved and wanted.

Please be praying for these families and their new daughters as they bond, and navigate the cultural, developmental, & medical waters that are before them now. Also for the children that are waiting at home in Georgia & in Michigan; that their hearts will overflow with love for their new sister and their own transition will be seamless with their growing family.

God is so VERY good. He is setting the lonely into families just as He promised. (Psalms 68:6). Thank you to all that have been praying & supporting this incredible project! (Please continue to contend for the five handsome boys still waiting for their new Forever). Four more Bamboo families are due to travel before the end of the summer… let’s get these kids HOME!!

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what we’re reading links: 6.18.2014

From the last few weeks, some good stuff we’ve read that relates to adoption and/or parenting a special needs child.

As always, if you’ve read or written something you think would be a good addition to a future What We’re Reading post, we’d love to hear about it.

To share a blog post or news article go here.
To share your blog with our readers, as a soon-to-be traveling to China family go here.

Gia

Gia, just days after meeting her new forever family

blogs

Several bloggers tackled the topic of racism against Asian-Americans, including Dami Obaro’s piece outlining the model minority myth entitled “Why Can’t You Be More Like Them?;” Tara Vanderwoude’s piece I’m Not an Exotic Asian; and Don Lee’s account of a recent encounter with a waiter in That’s Kind of Racist, Dude.

Kasi Pruit shares her journey as she processed the Death of the Picture Perfect Family at her husband’s blog i already am.

Kelly the Overthinker shares a list of 20 key things you need to know about China travel in #ohChina.

At Two Vandalgrads and Three “G’s,” Amy describes their visit to their new daughter’s orphanage in Journey to Gia, Day Four: Brokenness Before Redemption.

Several parents received great news in recent weeks, including Jamie from Hearts Set on Pilgrimage in She Hears! And other exciting news! and Lisa of Pursuing Miracles in God’s Got It!

Margie Perscheid, adoptive mom to two adult Korean adoptees, acknowledges her non-adoptive privilege.

High school graduate Christine, adopted from China, shares her college essay about growing up Asian in a Caucasian culture and having a brother with autism.

Ellen Stumbo ponders the question “what if she lives with us forever?” in regards to her second daughter, born with Down Syndrome.

Maureen of Finding Mei Mei discusses the effects of early trauma on a child in The Past is Not in the Past.

Chris of Apricot Lane Farms proves that being born with limb difference can’t stop you from anything, even one of the most physically demanding jobs in the world – farming!

At My Life in God’s Garden, Diane moved us to tears with her recent post Suffering.

Adoptive dad Jim describes the victories that count at Lanterns, Ladybugs and a Whole Lotta Love.

inthenews

Several Chinese newspapers ran articles about their country’s adoption program in recent weeks, including Chinese parents compete with foreign applicants to adopt health babies, Adopted American Girl in Quest for Her Chinese Birth Parents and International and Domestic Adoption in China.

Researcher ChangFu Chang, creator of the documentary Long Wait for Home, shares the synopsis of his current documentary project Ricki’s Promise and its kickstarter campaign.

In Yahoo! News, ANI reports that a New discovery could soon make epilepsy history.

Chicagoan Lily Born, an eleven-year-old Chinese adoptee, invented an unbreakable, hard to spill cup for her grandfather, who suffers from Parkinson’s Disease.

Yosemite National Park shared the story of Gabriel, an eight-year-old diagnosed with Ehler Danlos Syndrome, whose Make-A-Wish request involved the park in a huge way.

The Guardian shared a book review about the new book “Leftover Women,” written by Leta Hong Fincher, which details the “toxic vitality of sexism in China today.”

Read something inspiring lately? Informative? Encouraging? Share the link HERE.

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In China now to bring home their child…

Everything Beautiful
Adding One Morh
Impossible, Difficult, Done
Our Jones Clan

Just Home from China…

Two Vandalgrads and Two “G”s
The Layers of Life
Stop for Flowers
My Life Song
Lanterns, Ladybugs and a Whole Lot of Love
One More Thing
Bringing Home Andi
Homework, Hotdogs and Valium
Love Makes a Family
The Collected Hord
Team Willie Goes To China

Getting close to travel for your little one in China? Share the link HERE.

P.S. A big thank you to Amy for sharing a photo of her lovely daughter, and another to those who helped compile this week’s post.