Have you read many medical journals? Have you perused through any articles in the Journal of Gastroenterology? Let me tell you, I’m not completely convinced they’re written in English. So when my big kids started asking questions about their sister’s hepatitis, I had to get creative. If you happen to be a pediatric gastroenterologist/hepatologist, just look away.
Each Wednesday we post links from the previous week that touch on special needs adoption. Our hope is that these small snapshots provide you with a glimpse of life after adopting through China’s waiting child program… both the long-term blessings and the challenges that come with parenting a child with special needs. We also hope to raise awareness about a variety of special needs.
The Certainty of “Just Knowing” — adoptive momma (Korea) and adoption researcher Dawn Davenport at Creating a Family… a reader writes in, asking what should happen if one spouse feels certain that they have “found” their child, but the other spouse feels unsure
hoping for a parasite — adoptive momma (foster to adopt and Haiti) Kristen at Rage Against the Minivan… some tests showed unusual results which lead a mom to actually hope for a parasite
What’s Bugging Me Today — adoptive momma (China) Shirlee McCoy at And Then There Were Seven… a post that touches on navigating the waters of older child adoption
A turn down memory lane – adoptive momma (China) Nicole at The Baker Sweets… a momma shares her heart while she thinks back to her son’s condition at the time of a adoption
our road to an apraxia diagnosis — adoptive momma (Russia) Bethany at Life With Bubba, Chicky and Nicka… describing their journey to an apraxia diagnosis for her biological child, beginning with some blog comments left by speech-language pathologists (SLPs)
This post was written yesterday by my friend Kristi of Fireworks and Fireflies. After reading it, I asked her to please let me share it with all of you. Kristi is currently in China with her family finishing up the adoption of this little beauty, now forever known as Darcy.
Ian and I continue to be blown away by this pint sized addition to our family. She appears so “tough” and confident at first glance.
I keep having to remind myself that she is not yet three. In fact, one of the other moms thought she was almost five. It’s because of how tall she is and how much she can do on her own.
There have been times as I’ve watched her as she brushes her teeth, washes her hair, or try to put on her own clothes and wondered what was going on in that little mind. Is it all to impress us? Does she feel like her “big girl” abilities are necessary for us to accept her?
It would be so easy to just back off and let her do it all by herself. But every now and then the tough exterior weakens a bit. She’ll stop fighting me as I step in to help her turn her shirt the right way or lift her up to the sink instead of letting her drag the stool over so that she can reach the faucet.
And then there are the moments that she’s tired when she’ll start rubbing the back of her left arm over her eyes and whimpering ever so slightly. So I’ve been scooping her into my arms and soothing her in my little bits of Mandarin. And each time she lets me cradle her for just a couple of minutes and then the smile returns and “brave girl” Darcy comes back.
Until last night. She and Caleb got into a disagreement over whose Kung Fu Panda techo music spinning top was whose (never mind that the second and third ones were laying right beside them) and Darcy slammed the pocket door separating the bedroom and living room. I gently told her no and opened the door, and then she slammed it again. So the no was a little firmer the second time. And then the wall came down.
I held my baby girl for some 30 minutes as she sobbed. While it may have started because of the scolding, the spell had nothing to do with being told no. It was more about getting used to her new life. It was heartbreaking, but it was time. And while I hate being part of the cause, I’m so relieved that she’s starting to trust me enough to let down her guard. I also have no doubt that there will be more grieving to come. Who wouldn’t be sad, angry, confused, and scared if their world suddenly drastically changed. I don’t know if I could be as brave as she is.
But one of my favorite songs by Third Day keeps running through my mind. It says, “I can’t stop the rain, but I can hold you ’til it goes away.” (It’s a beautiful song, check it out!) So I will be there from now until the rest of my life to ride out the storms with my sweet little one. Because we’re family now. And that is the miracle of this journey…
News from The Center for Adoption Policy regarding grandfathered I-600As.
Posted on March 2, 2010.
March 2, 2010. Limitations on Grandfathered I-600As. CIS has posted on its website a Q and A detailing the rules pertaining to grandfathered I-600As. This is relevant for families who were in the adoption process prior to April 1, 2008 and wish to use the orphan processing program for Hague Convention countries. We urge all ASPs and families to read this document to see which changes they can make to their I-600As in Hague countries and still retain grandfathered status. In particular we would like to point out that potential adoptive parents can change the country that they sought to adopt from but they may not use the new I-600 to bring home more children than the number approved by the original I-600A unless they are bringing biological siblings home. Therefore if a family with a grandfathered I-600A was approved for one child and now they wish to bring home a second child simultaneously, the family must file an I-800/A for the second child.
Read more HERE.
by Sue, mom to Jadyn from China with a SN of TGA, PS and VSD (major heart condition)
Our SN check list included mild and/or a correctable heart condition. 35 months after our log-in-date we received a phone call from our agency about a little girl who had recently turned 2 and had a VSD. They wanted to know if we would be interested in reviewing her file? By all means… YES we would. Less than five minutes later we were looking at pictures of an adorable little girl standing in a metal crib. I could just picture myself being her mommy.
We began to pour over her Chinese file, I read words I had no idea what they meant, she had more than a VSD, this I knew. My husband got on the phone and called two different pediatric cardiologists. We felt blessed that both offices agreed to review her medical file that day. We immediately e-mailed both offices her medical file, on a Friday afternoon!
Not one, but both doctors called us back that day. The first doctor explained her condition to us, and my husband was set, this was our daughter. I was more hesitant; I wanted to hear from the second doctor. Her condition was serious, I could not imagine falling in love with this baby and having her life cut short because of her heart condition.
The second doctor mimicked the exact same diagnosis and what was needed to repair her heart. Both Doctors told us that she would need open heart surgery, but that she would live an active, normal life. We accepted the referral of our daughter that evening, whom we have named Jadyn Qi.
My husband and I both would stay up late on the internet reading about her condition, this went on for weeks. We became somewhat of experts. I knew medical words and names of procedures, I had never heard of in my life time.
Jadyn has Transposition of the Great Arteries (TGA), Pulmonary Stenosis, and a very large VSD. The last two conditions actually saved her life, as TGA alone is fatal.
Nine weeks after accepting her referral, Jadyn was in our arms.
After many tests and a echo of her heart it was found that her VSD could not be closed due to the size, it was too large to patch. Her doctors decided that she would have the Glenn & Fontan procedure. Home from China only 2 weeks, Jadyn had open heart surgery.
Our girl is a trooper. Just six weeks after surgery, her cardiologists told me “I’ll see her in six months.” Six months? Are you kidding me? Jadyn is on a half a baby aspirin per day, no other medications or restrictions. Once she reaches 35 pounds she will have her final heart procedure, called Fontan.
She has been home now for six months and has blossomed more than we could have ever imagined. Jadyn has gained seven pounds and grown over 2”. She has learned to run, to climb stairs, She is fully potty trained, can count to 20 and knows well over 100 English words.
Jadyn gets winded when she runs or plays hard, this will be corrected with her next surgery. Before her Glenn procedure her oxygen saturation level was in the 70’s and even lower when she would cry, it is currently in the mid 80’s. She is projected to be within normal range of mid to high 90’s after her next surgery.
We love this little girl so much.
You can read about our journey to Jadyn here.
Please feel free to email me with any questions you may have regarding our experience adopting a special heart baby.
We are excited to share that Carrie will be joining us as a guest poster here at No Hands But Ours. Carrie works in China at New Day Foster Home and chronicles her life in China on her blog Signs of Hope.
A Greater Tragedy
She was talking about AIDS orphans. Maybe that’s what caught my attention. I don’t really remember. And though I don’t usually watch celebrity interviews, I was sitting in a hotel room by myself, with nothing else to do. And so I listened as Angelina Jolie talked about the photograph she was holding.
A little boy with his head happily cocked to the side. You could clearly see mischief in his eyes. She’d met him on a visit to an AIDS orphanage in Africa. He was maybe 7 or 8 years old. And she’d snapped the photo as she toured the place. A few months later, fate brought her back to the same orphanage’s dusty gates. She remembered the impish boy and asked about him, hoping to see him again.
“Who?” the staff asked, overwhelmed by trying to care for so many children.
“This one,” she said, pulling the photo out of her pocket.
The staff thought for a bit and then someone remembered.
“Oh, he died a while back.”
She asked to go to his gravesite and was taken to a large graveyard with many unmarked graves. No one knew which one was his.
No one remembered.
Angelina Jolie’s eyes glistened with tears as she gripped the photograph and whispered, “This is the only proof that he ever existed.”
This week, I’ve been thinking a lot about our loss of Tristan. A beautiful toddler who lived at our foster home for over a year, he died quite suddenly and unexpectedly of heart failure on February 18, 2010.
We get asked a lot how we can bear to keep going. Sometimes we ask ourselves the same question. We see a lot of sorrow and suffering; a lot of sick children, and many who pass away. We see a lot of pain and brokenness. Sometimes it seems more normal to have a baby with a birth defect then to have a healthy child. Our “best case scenarios” end with a child leaving us with their new adoptive parents. The worst ends with a flat-lined heart monitor. In either case, we love them for a while and then they go.
Self-protection and preservation is a normal human response. If something hurts when you touch it, you don’t touch it again. If something hurts when you love it, you don’t want to love it again.
But we can’t stop.
Because there’s a tragedy greater than Tristan’s death.
There’s the tragedy of a little African orphan in an unmarked grave with a single photograph being the only proof he ever existed. There’s the tragedy of thousands of orphans like him, living lives in cold and sterile rooms – staring at ceilings and finding comfort in themselves. There’s the tragedy of children who die alone.
It may hurt us to love them, but true love is a sacrifice. And it’s a tragedy for us to lose them. But it’s a greater tragedy for them to never know love.
You can read more about Carrie’s work in China on her blog here.
by Karin, mom to Chloe from China with a SN of a limb difference
Years ago, God very clearly led us to start down the adoption road for a little girl in China with a special need that was not considered ‘adoptable’. At the time, CCAA had never allowed a child with this SN to be adopted. We had just returned home with our second daughter from China, and having four kids was sending us over the edge (haha). I had no desire for any more kids!!
There was no SN list back then and rarely were any pre-id adoptions allowed. However, we knew we were to try. We had a contact in China — at the orphanage where ‘our little girl’, Chun, was living. She was trying to help from the China end. Over the next two years, God led us down many paths — up high mountains, low valleys. There were moments of extreme awe and happiness as a roadblock was removed, only to be replaced with a long dark valley as another loomed in its place. We sought the Lord at every turn and were told to continue on.
We finished our dossier, only to find out that because of the quota placed on agencies that year, our agency no longer had a slot available. (A mix-up — but nothing could be done.) So we had a dossier with no way to get it to China. And the clock was ticking on our paperwork, as you know.
For eight months it sat. In the meantime, CCAA started it’s first SN list. Finally our agency found another agency with available slots and we were able to send our dossier through that agency. But let me tell you… it was a long eight months!!
Our new agency had a director who was — well, less than honest. He kept telling me that our case was going to be presented to CCAA in person… that the person (QS), doing so was on his way to China at that very moment. I would wait on pins and needles for QS to return…. send emails… get no response… finally call and call and call. My insistence for an answer would finally grant me an opportunity to talk with the director — only to be given the cryptic response… “No news this month.”
This went on for months. We could do nothing but wait and pray. All of our friends were praying with us for little Chun and that CCAA would relent and allow her to be adopted. Her paperwork was at CCAA.
During that time a personal friend of mine started some charity work in China. She miraculously — amazingly — was using QS to facilitate the beginnings of her work there. QS was part of a teeny, tiny, never heard of agency… the same agency that we were using!!! She asked QS about our case and he had never heard of us! (So much for him presenting our case numerous times to CCAA like the director had said…. grrrrr…..)
QS eventually presented our situation to CCAA and we were matched with Chun… I cannot begin to tell you the euphoria we felt when we were contacted with the news that we had been matched!! We were beside ourselves!! We were told that our file still had to be given approval by the director there, but that things looked pretty good.
A month later, we were contacted again with devastating news. QS had been told that the adoption would NOT be approved. CCAA would not approve a child with her special need for international adoption.
We were told that we would be getting a referral and that it would not be Chun. Well… I knew that I served a big God who could change hearts and I didn’t want to give up on Chun. She needed a family. I had been praying for almost two years with a Mama’s heart for that little girl. I couldn’t give up on her now.
A few weeks later, our referral came. It was not for Chun.
We were devastated. I don’t know what was worse… knowing that Chun wasn’t coming home, or wondering if I had heard God wrong all those months. Could I really hear from Him? Why had He led us down this path? Had I only THOUGHT He wanted us to try to adopt her? How could we come to the end of a two-year road and not get her?
My heart was broken. What should we do about the sweet little girl we were referred? I wanted her. She was a beautiful 12 month old. She could fill the place in my heart that was so empty and grieving.
While we had waited for Chun, God had given me a name. Chloe. That name was supposed to be for a little girl who was ‘lame.’ Don’t want to make this sound too weird, but all the verses that He led me to were about ‘the lame’ so I knew she had a leg or foot problem. And one day in the fall of that year, I had been so burdened for ‘Chloe’ that I wondered if she had been born then??
The little girl we were referred was not lame. I wanted her anyway. What if CCAA got really mad at us for turning down a perfect referral? Would they just dump our dossier in the trash? We had already been waiting 2 years. Would we walk away empty-handed? How could God ask us to walk away from this precious baby girl?
Our agency was sympathetic, thankfully. Jeff and I prayed earnestly and felt that the little one we were referred was not our daughter. We had to check the box that said we were rejecting the referral. Ohhhhh…. so hard. I thought I would die. How could we reject her? With the rejection, we sent a letter saying that we thought she was beautiful and perfect but we had originally asked for a child with special needs and wondered if they would please allow us to wait for the next waiting child list to arrive at our agency so that we could chose a child from that list?
Thankfully… CCAA agreed to this weeks later.
Three weeks later, we received an email from our contact in China saying that a Christian family in China wanted to adopt Chun. Since they were Chinese, CCAA had willingly sent Chun’s paperwork back so that the domestic adoption could take place. All of our prayers for Chun to have a Christian family were miraculously answered!!! And who would have thought that God would provide such a perfect family for Chun?!?!?!
It was with great relief that we felt released from advocating for her and could move forward with an adoption of a different child.
Our agency was small, as I said. Back then, waiting child lists were fairly small. What were the chances that our agency would get a list with a ‘baby girl born in the fall, who was ‘lame’?”
A few months later, I learned that SN lists had been sent to agencies. Of course… it was a holiday. New Years. Agencies were closed. The suspense was intense.
When the offices opened, I called. Our agency had gotten a list. There were six children on it. I so clearly remember asking, “Do you have a little girl with a foot or leg problem, born in the fall on the list?”
“Just a minute. Let me check,” she said. LONG PAUSE while my heart thumped out of my chest. “Yes. We do! One little girl. She has some missing toes and a leg that is shorter than the other.”
“When was she born?” I asked.
“Nov. 30th,” she responded.
“Put her on hold for us! She is our daughter!” I said.
“Don’t you want to see her picture?”
“NO!! I know she is ours!”
And she was! She was our Chloe.
For all those months, between losing Chun and finding Chloe, I struggled so much with, “What was that all about? Why did you lead us down those paths…seeming like you were leading us to Chun, and then at the last minute, jerked the rug out from under us? How could You be so cruel?”
His answer came in many different ways — but the bottom few lines are this:
* We are very goal oriented. We think that the goal is the purpose, when actually it is sometimes the JOURNEY that is the purpose. The things we learn on the journey are the things He wants to teach us.
* We need to stay close to Him and listen carefully at all times… not assume that once on the path we know the destination. He is in the driver’s seat and if He wants to change course, we need to be paying attention or we will head off in the wrong direction. So if we start in Florida, and He takes us on all the necessary roads to Ohio so that we think that is the destination, He might keep us on that highway until we get far enough north to turn toward New York.
I grieved deeply when we lost Chun and the little girl we were referred. Not only did I grieve the losses of both girls, but I grieved what I thought was my relationship with the Lord. It was humbling to say the least. Eventually, He showed me that I COULD hear from Him, but that I should not assume I knew the end — nor doubt my ability to hear just because He changed the destination from what I had thought it would be.
To meet the rest of our family, visit us here.
Adoption is a roller coaster.
And meeting and spending those first few day getting to know your child can be one of the most wonderful times of your life.
It can also be pretty tough.
One of the issues we’ve encountered with almost all of our adoptions is difficultly in the department of communication. Obviously, when you adopt from China, your new child speaks and understands a completely different language. And even if your child isn’t verbal yet, they definitely have wants and needs. And a need to express those wants and needs. So, regardless of your new child’s age, communication is certain to be an issue.
One thing that has been a huge help to us as we have navigated those days, weeks and sometimes months of not quite understanding each other is ASL. American Sign Language. We learned about ASL and it’s benefits as we were seeking out answers for speech issues with our oldest biological son, over ten years ago. We were intrigued and so invested some time and a few dollars in this book:
And we were not disappointed. The signs were easy to learn, logical and easy to remember and use. And they covered basics: “mama”, “daddy”, “more”, “eat”, “drink”, “bottle”, “bath”, “play”, “boo boo”, “outside”, and the very necessary “no no”.
When we traveled to adopt our daughter Isabelle, we used these same words we had learned to use with our son years before. And although she was only 11 months at adoption, it didn’t take her long to catch on to a few signs and begin signing herself. Some of her first “words” were the signs: “more” and “mama”. And yes, it is definitely just as sweet seeing a first word as it is hearing it.
Eventually we purchased some signing flash cards that had additional words for her to learn, and she enjoyed looking at and playing with the cards as much as she did learning the new words.
Now, as we navigate the weeks and months of being home with our new daughter Vivienne, we find ourselves depending on these signs again to ease the lumps and bumps of communication breakdown. Two at adoption, she has a wonderful grasp of Chinese and even though we’ve been home a month, she isn’t about to let go of her native tongue.
So signing has been a blessed compromise and although Vivienne has yet to spontaneously sign to us, she does love to imitate us when we sign to her. Teaching her to sign “please” was one of the first things she and I worked on in China, for our family this particular sign has been a lifesaver over the years. If Vivienne wanted something, but couldn’t stop crying over it, I’d insist she at least try to sign it (“please” is a circular motion on the chest) and, in order to sign, she’d have to stop crying. Sort of like chewing gum and patting your head at the same time, you can do it, it’s just not very easy. So just like that, our impasse was resolved. She’d stop crying and ask nicely (if even by just making an attempt to imitate the sign) and I would be able to give her what she wanted. Not necessarily rocket science, but it sure has helped us keep our sanity on numerous occasions.
I hope this might be helpful to someone preparing to travel to China for their little one.
If you have a travel tip of your own, please leave a comment, I’d love to compile and post a list to help future travelers