The Past, The Present, The Future

Any good fiction writer knows that a character without a past is a cardboard cut out. No depth. No spirit. No life. An author can write all the angst and emotion she wants, but if her character comes from nowhere, her character will go nowhere.

The same is true of life. Without knowledge of where we’ve come from, we can never truly understand the direction we’re heading.

As an adoptive mom, I go days and weeks without thinking about my daughter’s past. She has transitioned so beautifully, fit so perfectly, that I’ve had little reason to question what came before. When I have thought of her past, my mind has only gone to what I know – that Cheeky’s foster family loved and cared for her.

But there is much more to my daughter’s past than that.

There are things my mother’s heart does not want to know, but that it must know if I am to help Cheeky process her life story.

Last night, I recieved the second installment in the story of Cheeky’s life before we met. It was as painful to read as the first. In it, China Mom describes an extremely delayed three year old who was so terrified that she wet her pants each time China Mom approached. She did not interact with the adults in the home. Nor was she able to feed or dress herself. She could not verbalize her needs and was so weak she could barely stand. Just fourteen days shy of her third birthday, she was developmentally on par with a twelve month old.

I felt sick when I read that Cheeky did not smile for nearly a week after arriving in the home. My girl never stops smiling.

I felt sick when I read that Cheeky was so desperate for food she cried when meals were finished. My girl enjoys eating, but she’d much rather be playing or singing.

I felt sick when I read that Cheeky would sit by herself for hours and never seek out companionship. My girl loves to be with others.

I felt sick when I thought of that neglected and scared little girl. That terrified and delayed child. That little one who would be mine.


Soul sick.

I do not want to know, but I must know. I do not want to believe, but the truth is before me.

I have been up at four the past two mornings. I have walked into my girls’ rooms, and I have looked down at Cheeky’s pale face, I have touched her soft cheek and I have cried for the baby she was. My heart has bled for what she didn’t have all those years ago. It would be so easy to turn my back on what I know, to hide it away and never reveal it to Cheeky.

One day, though, she will ask what her life was like before us and before China family. I know this as surely as I know that I will sit her down, I will look into her bright blue eyes and I will explain all that I know of her life.

The neglect.

The hunger.

The lack of affection and love.

The miracle of China Mom discovering her in a corner of the orphanage that long ago day.

The miracle of our adoption agency spotting her on the shared list and choosing her for us.

The miracle of us coming together and becoming a forever family.

Cheeky’s life is not a one sided story. It has its darkness and it has its light. Her character and strength come from all that she has experienced. Good and bad. Ugly and beautiful.

When the time is right, when she is ready and seeking, I will explain that to my darling girl.

For now, I hold her story close. It is not the lens through which I view her, but when it seems that she needs more cuddles than my other children, when I sense in her a quiet desperation to belong, when she comes to me with bags of candy that she’s hidden under her bed, I remember it.

Adopting an older child does not mean the past is gone. It simply means that it is hidden. It is our job as parents to reveal what we can of it, and then to remember. No matter how painful remembering may be.

our incredible boy

by a mother of a boy adopted from China with a SN of ambiguous genitalia

I first fell in love with his photo. I saw it on a Waiting Child listing. When I read the paragraph of background information and saw the words “ambiguous genitalia,” I didn’t really know much about the condition. At the time, we weren’t planning on adopting, so I just casually read a little more on the topic. Two months later, we requested his file.

It contained very little information. We knew he was healthy. We could see from photos and read from the description that his genitalia was different from that of other boys. We started thinking about adoption.

I contacted several doctors, including a pediatric urologist and a pediatric endocrinologist. The endocrinologist filled in a lot of gaps, explaining several possible diagnoses that would have led to his condition. Both doctors told us that they would do further testing after our son arrived home. After we accepted his referral we received the results of a chromosome test that a previous prospective family had ordered. The test revealed XY chromosomes that matched the gender in which he was being raised. But our endocrinologist explained that a lot more goes into gender than chromosomes or organs. She explained how a person’s brain “feels” male or female based on in-utero exposure to hormones. We learned that we could not rely on his chromosome test or his internal/external organs to completely determine gender. Our doctors told us that they would work with us to make the best possible decision on his gender after he arrived home. (Based on what we learned, I now believe that pre-adoption testing for children with disorders of sexual development (DSD) is rather pointless. Sending countries do not have the resources to adequately test children and invasive procedures subject children to unnecessary trauma. Our son was definitely traumatized by endless blood draws—requested by earlier prospective families—that really told us nothing of consequence.)

During our wait, I worried a bit. What if we got “him” home only to be told that he should really be a “her?” What would we tell people? How would people treat him?

Worry was a waste of time. The moment we met him, we knew he was “all boy.” Further testing revealed that he was born without testicles; they’d “vanished” in-utero, giving him the brain of a boy. His small phallus will grow with hormone supplements and he should lead a relatively normal adult life. Best of all? He is an extremely happy, healthy child who loves life and his family.

I’m aware that many consider this a “mental health” condition, assuming that children with DSDs will grow up to be unhappy adults. Previous generations of adults with DSDs were raised in an era where children were often surgically altered at very young ages to force them to look like one gender or another. As professionals and parents understand the importance of waiting to make irreversible surgical decisions, the future looks different for those with DSDs. Professionals estimate that 1 in 1000-2000 births are affected by some type of DSD. It’s common.

The number of waiting children with “ambiguous genitalia” is astounding. They are healthy children who just happen to have a difference in one part of their body. I can’t imagine life without our beautiful son. If we adopt again, we will adopt a child with a DSD.

Support groups for families of children with DSDs:

Yahoo Group for Intersex Kids from China

Yahoo Group for AIS/DSD Parents

Consider reading:

Fixing Sex: Intersex, Medical Authority, and Lived Experience by Katrina Karkazis

DSD Guidelines, a project of the Consortium on Disorders of Sex Development.

The Shirt and Her Finger: Self-Soothing Comes Full Circle

I was scrolling back through the photos … photos I was given by someone, someone who cares about our daughter.

I saw a detail I never noticed before. I think I have always stopped at her face. It says so much, too much for a little girl of 2 years old to understand. So much heartbreak, so much hurt, so much fear, so much trauma.

At the time this photo was taken, we were still awaiting our LOA for her adoption, and she was living out the most unimaginable over there. She had been in the hospital for weeks at this point, though we would not find that out until months after we came home. I have many more photos that I will not share, but one can piece together so much from them. Photos do tell stories.

You all are probably wondering what is the detail I noticed? It is jumping out at me now. Notice her little index finger on her left hand, tucked just inside her shirt.

I am filled with a mixture of deep and soul-aching sadness over this detail, because I now know what this action on her part means. I now know that it is a soothing technique for her. I now know that she does this still, except now she tucks her little index finger on her left hand inside my shirt. It used to be that she would tuck it just inside her blanket, but recently she started laying her head restfully on my shoulder and tucking her finger into my shirt.

The attachment process has been a journey these past 15 months with her home; it still is a journey that we don’t expect will ever quite reach a stopping point.

She has endured so much, so much I just can’t bear and do not ever care to share. She has endured more than most of us ever will in a lifetime: so much loss, so much pain, so much grief, so much fear, so much of this ALONE.

I can’t blame her for keeping her guard up for so long. Why would she not? I nearly cringe when I see other blogs of APs who come home to big parties and pass the child around just days after coming home. Or reading about how the child won’t sleep and how long should parents let them cry it out. Or reading about the child’s need to eat all the time, and how this is just not going to be allowed. Or wondering if they should disallow their child from sucking their thumb or using some other sort of self-soothing technique. We never even thought of discouraging our daughter from sucking on her 3 fingers on her right hand or from holding on so tightly to her own little shirt and blanket with that index finger. How could we have done that? It was all she had for so long.

It is no wonder she has taken this journey to allowing us all in, and one that continues to this day. It is no wonder she will take out one of her brothers if he playfully attempts to snag one of her gold*fish. It is no wonder that she wanted to soothe herself for so long.

What other choice did she have for 3 years? She had to fight off others for her food, she had to brave it out in the hospital for weeks on end with no Mommy or Daddy there to hold her hand as they inserted the adult-sized needles in yet another place on her tiny hands and feet. She had to longingly tug at her own shirt with her little index finger as she drifted off to sleep alone.

Yes, unwinding that defensive little solitary person inside and helping and encouraging her to be the little child God created her to be … helping her learn to trust and to love unconditionally and to accept unconditional love … it takes time … and understanding … and tears … and steps forward … and a patient heart when she needs to take a step back. And a soft place for her to lay her head and tuck in that little index finger … knowing that finally she’ll never have to face the storms of life alone again.

This post is really not one that is neatly finished and tied up with a pretty bow, because life sometimes just isn’t neat or pretty.

Whatever Wednesday

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.

3rd Eyelid Surgery Tomorrow
adoptive momma (China) Jenn at Love Like Crazy… a momma worries before her daughter’s third surgery

Two ears are better than one
adoptive dad (China) Glen at Our Journey to Norah… discussing his daughter’s upcoming second cochlear implant surgery

A Year Ago Tonightwaiting to adopt (China) the Wilx Family at Everyday Miracles… describing the past year, watching their future son grow and thrive in New Day’s foster program

Cleft Issues You Deal Withadoptive parents (China) the Straights at Straight Talk… why cleft lip/ cleft palate is NOT a minor need because it is an everyday need

Sharing all I learned from the Denise Best conferenceadoptive momma (Haiti) Christine at welcome to my brain… sharing tips and tricks she learned from the “Thereaputic Interventions for Traumatized Children” conference

Top Ten Reasons to Get Your Tonsils and Adenoids Out
adoptive momma (China) Steffie at Never Too Many… having fun in spite of a recent surgery

older child adoptionadoptive momma (China) Lori at JOY Unspeakable… sharing her heart about adopting an older child

Update on Joel: Open-Heart Surgeryan adoptive momma (China) at Room For At Least One More… waiting to travel, they receive a medical update about the son they will soon adopt

adopting SN step two: the paperchase

This is the second post (read first post here) that attempts to answer the oft asked question:
“How do I get started? We have decided we want to adopt a child from China through the special needs program, but what do we do next?”

Once you’ve chosen an agency, the real work begins.

It’s time to start the mind-numbing process of collecting paperwork for your dossier.

And as ridiculously long winded and painfully difficult it might seem at times, believe me, it’s totally worth it in the end.

Whether you’ve ‘found’ your child yet or not, you still must complete all the necessary paperwork to be approved both by the USCIS and the CCAA to adopt from China. This phase of the adoption is knows as the “paperchase”. Each adoption agency has specific guidelines to follow for compiling this paperwork, which is one of the reasons it’s generally recommended to sign up with an agency before starting your paperchase.

Shortly after applying to and being accepted by an agency, you should receive a very large binder, or something similarly gargantuan, that will spell out in great detail how to compile your dossier. Expect this binder to be the place in which you will spend every spare moment for the next several months.

I’m not gonna lie. This phase of the adoption process is no fun. But, like I said, every ounce of effort is totally worth it when you are holding your newly adopted child.

The *key* component to a dossier is the USCIS approval, also known as the i800A. It is so important because firstly, you can’t adopt an orphan without it. And secondly, it’s generally the most time consuming portion of the dossier compiling process.

The documentation required to apply to USCIS for your i800A is as follows:

1. Proof of U.S. citizenship
2. Proof that you are married and that any previous marriages ended legally (ie. divorce decrees)
3. A complete and current home study
4. Proof that you have complied with the pre-adoption requirements of the state in which you will live with your adopted child, if necessary
5. The required filing fee for your application
6. Fingerprints for all household members over the age of 18, collected by the USCIS
*more information here

Because a homestudy is required to apply for USCIS approval, the best and most expeditious way to get started on your dossier is to get started on your homestudy. Generally, four or more visits with your social worker are necessary. And that takes time. Also required are state clearances, financial information, autobiographies, reference letters, physicals and, depending on the state in which you reside, various and sundry additional information.

Soooo, the sooner you can get started on your homestudy, the sooner you can apply to the USCIS for your i800A.

Typically, a homestudy takes 4-6 weeks to complete, but much depends on your social worker and your homestudy agency. A good question to ask when interviewing a homestudy agency is their timeframe for a completed homestudy. I made the mistake of not asking this question with our first adoption and our homestudy took a ridiculously long four months to complete. Believe me, once you’ve seen your child’s face, four months waiting on your social worker will be way too long.

While your homestudy is in progress, you can begin to collect the other documents required for your dossier.

Dossier documents you’ll need to collect are:

  • Birth certificates for each parent (less than one year old)
  • Marriage certificate (less than one year old)
  • Physical for each parent
  • Employment verification and, if necessary, non-employment verification
  • Letter of Intent to Adopt written to CCAA
  • Financial Statement
  • Police Clearances for both parents
  • Passports ~ copies of photo pages of each parents’ passport (so if you don’t have a passport yet, apply for one right away)
  • Photos ~ depicting family life, number varies by agency
  • I800A approval from USCIS

Some agencies require a completed dossier before you are allowed to review a child’s file, while others will allow you to review files before you’ve even begun your paperwork. So if you’re committed to bringing home a child from China, even if you haven’t *found* your child, it is the perfect time to start climbing that mountain of paperwork. Yes, now.

I promise, it will be totally worth it in the end :)

Next post up in the series ‘adopting SN: the process’…

Finishing The Paperchase: Authentications, Certifications and Notarizations.


**This post is not, in any way shape or form, intended to be the difinitive guide on compiling your dossier. It was composed under the influence of a faulty memory, mothering many small children, and extreme jet lag. Your opinions, comments and corrections are greatly appreciated.**

Choosing Your Child…SN Adoption…My Thoughts and Experiences

This post originally ran on my blog last August. The response to it was so strong that I felt I should post it here as well.

I am writing this post because I have been contacted by several Moms who were in this place in their journey. The place where you are looking at the file of a child and you have to tell your agency whether or not you accept him or her by 5pm tomorrow. Sometimes you don’t even get that much time. Sometimes you are being pressured that if you don’t accept this referral, it may be a long time before you get another.
You are looking at the face of a beautiful child. You were so sure you would know instantly when you saw your child’s face…but you don’t know for sure with this one…you look for any clue, any sign that this is the one.
You read every word in the referral over and over. You forward the referral package to your pediatrician and any specialist you can find. You are typing medical conditions into google search that you cannot even pronounce.
The little face is tattooed in your brain. This is a child living somewhere in the world who needs a family and their fate is in your hands. You could be their mother. All you have to do is say ok.
The anxiety creeps in. Is the file accurate? Can I handle this SN? How will this condition work with our family?
You cannot eat, your stomach is in knots. You cannot sleep…you toss and turn all night long. Is this my child? What should I do?
You pray…literally fall on your face before God begging Him to tell you…give you a sign.

Sophia was the fifth file we reviewed. I had no peace and God was quiet while I suffered through the first four files and let the little girls move on to their forever families. It was hell. That is the only way to describe what I went through. Emotional hell. I questioned my faith, had I not been strong enough to accept the child meant for me? Had I missed a sign from God and let my daughter pass through my fingers?

File Number 1: Beautiful little girl with repaired spina bifida. Her birthday was my Grandfather’s birthday and she had the double cowlick that runs in our family. We thought for certain that this was our girl. Many people fear spina bifida children, but I know through my relationship with Amanda at Starfish that these children can be healed and live wonderful lives and they deserve families. We sent the referral packet off to our pediatrician and he thought some things needed clarification.

The file stated she was standing and walking. He wanted to know if she had bowel control and if she could walk unaided. We contacted our agency and asked them to call the orphanage and ask these questions. They did. IF YOU HAVE A MEDICAL QUESTION THAT NEEDS TO BE ANSWERED IN ORDER FOR YOU TO FEEL COMFORTABLE ACCEPTING A REFERRAL, HAVE YOUR AGENCY CALL THE ORPHANAGE. THEY CAN AND THEY SHOULD.
We found out that this little girl was completely paralyzed from the waist down. The information in our referral packet was incorrect. We sadly turned down the referral. We had decided early on what SN’s we could handle positively and at what severity and this was too severe for us. BE HONEST WITH YOURSELVES ABOUT WHAT SN’S YOU CAN HANDLE.

File Number 2: Almost the same situation as file number one, except we could not get the information we needed to feel comfortable accepting the referral back from the orphanage. They would not cooperate with us enough for us to feel comfortable moving forward, so we turned down the file. IF YOU CANNOT GET ENOUGH INFORMATION TO FEEL COMFORTABLE MOVING FORWARD WITH THE ADOPTION, IT IS OK TO SAY NO AND LET IT GO. All of the children whose files we reviewed found their true forever families. It was never us.

File Number 3: This one was the most difficult. Absolutely darling little girl with a heart condition. Thank you thank you to my friend Kelly who gave me the name of a fabulous cardiologist. We believed with all of our hearts that this was our daughter. I will always carry her with me. I sent the referral to my pediatrician who said that she would definitely need a second surgery (she had already had one in China), but that he thought it looked ok. I also sent the file to a pediatric cardiologist who called me within an hour to tell me that this little girls situation was grave, she wouldn’t live past her teens. I have an excellent pediatrician, but he is not a heart specialist. FIND A SPECIALIST WHENEVER YOU CAN TO REVIEW YOUR REFERRAL. If we had not sent our file to a specialist, we would be the parents of a child who would pass away much sooner than we would be ready for her to.

File Number 4: This file never seemed right to me. I got the call from our agency and they sent over the file of a little girl with an eye condition. Her eye would need to be removed. We had asked for the referral of a little girl younger than Eli. We did not wish to adopt out of birth order. Our agency misread this little one’s birthdate and thought she was a year younger than she actually was, she was truly older than Eli. I just knew in the pit of my stomach that this wasn’t my daughter. We turned down the file.

Sophia’s File: I got the call from my SW. She sent the file. I opened it up and refused to fall in love. I just didn’t have it in me. I was afraid of investing in another little girl, I was afraid of the anguish again. I sent the file to Tim. He was instantly smitten. I sent the file to our pediatrician and to the same cardiologist who had given us the terrible news about the other little heart girl whose file we had received. It was 2:30pm and I was told I had until 5pm to decide on whether or not I would accept this little girl and that they had other families who they knew would take her. Thank goodness the cardiologist’s office called back within an hour. They told me that this little girl’s condition was much better than the last and that they thought she looked good and that if they were in our shoes, they would accept the referral.
I had been praying to God to please help me, to please give me a sign. I didn’t need a burning bush (although that would be great). And then I noticed the red maryjanes. I know it sounds random, but it was not random to me. I knew it was God and that He had heard me all of those times before and that His silence was my answer regarding the first 4 files. Those girls were not mine.
But this girl was meant for me. I had peace. I had no sleepless nights. There were no knots in my stomach. Every obstacle in our path was removed. Our daughter came home.

IF I CAN GIVE ANY WOMAN WHO IS GOING THROUGH THIS COMFORT, PLEASE FIND IT IN THIS: I do not believe that God will allow you to miss your child. It’s too big. It just is. He will let you screw up a lot of things in your life, but I do not believe this is one of them. God has a purpose and plan for your life and for the life of your child. He is not going to let you adopt the wrong child who was intended for another family and He is not going to allow another family to adopt the child meant for you. I truly believe this. It’s just too big.

I also want to say that I am here if anyone needs someone to talk to. You don’t need to worry about how well you know me or whatever. If you are going through this time in your journey and you need someone to talk to, e-mail me and I’ll get you my phone number

Xie Xie

Thank you.
Thank you for passing the milk.

Thank you for helping me with the dishes.

Thank you for the Christmas present.
In most situations, thank you works. It’s appropriate and conveys the intended message. But sometimes, words just aren’t adequate.
On July 27, 2006, I stood in a sweltering reception room in the Guiping Social Welfare Institute in China’s Guangxi province. I had in my hand a little green box containing a gold necklace with a heart-shaped charm, a good gift for a foster mother, our guide had assured me. Most of the people from our adoption group had already left the room to go to lunch, and our translator was poised with her pen over a tiny piece of paper, waiting for me to tell her what to write.
Over a year before, in the very beginning stages of our adoption, I’d happened upon a stranger’s “Gotcha’ Day” video that affected me deeply. A toddler was being adopted and for some reason, going against protocol, the foster mother was delivering this child to her adoptive parents. The foster mother handed the girl to her new mother, but then quickly pulled the child back, hugging her to her chest and sobbing. A man in the room spoke harshly to the foster mother and with large hand gestures insisted that she give the child back to her new mother. The little girl was hysterical and the foster mother, clinging to her, ran for the door. The man stopped her and forcefully pulled the girl from her arms and gave her to the distraught adoptive mother. The whole thing lasted probably less than thirty seconds, but it disturbed me so much that I called our adoption agency that day.
“I don’t want to go to China and take a child away from a loving family,” I said to our adoption coordinator. “What I saw today is not what I signed up for. I completely support foster care, but if a child is loved and cared for and cherished, why am I even there? I can’t do that.”
Kathy, herself an adoptive mother many times over, listened calmly and said that it’s a great gift to adopt a child who can form strong attachments, that it may be harder initially, but that in the long run it’s always better. I agreed. Of course a foster family is preferable to an orphanage. “I’m sure it’s better for the child,” I said. “I’m sure it’s better for the adoptive parents. But what about the family left in China? Was it better for them? Did that foster mother want to adopt the child she’d raised from a newborn and keep her as her own? Was it only money that held her back? Shouldn’t the love of a family trump money?” Kathy, our ever-patient advisor, listened and reassured. “Foster families go into this knowing these kids won’t stay,” she said gently. “They are the heros of the adoption world. If you’re fortunate enough to adopt a child who’s been in a loving home, be thankful.”
When we got our daughter’s referral, we saw on her paperwork that the box which said “institutionalized” was checked. She was living in the orphanage in Guiping and at age six months the nannies there described her as “a very obedient baby who will not cry to affect adult’s work.” I couldn’t even read that sentence aloud when I called our extended family members to tell them our good news. My voice caught every single time. Babies should affect adult’s work. That’s just what they do. This baby needed a mommy and we so wanted her in our family.
When we arrived in China, our guide handed us a paper with updated information. After reading her schedule, and her likes and dislikes, we read at the very bottom, “living with foster family.” I told our guide that that was wrong. We saw her paperwork only two months before and it said she was in the orphanage. He said that it had only been a few weeks, but that she was now with a foster mother, father, and older brother. I rejoiced for her, for our daughter who I knew needed a mother, but I couldn’t shake that heart-wrenching video. Like a mantra, I just repeated Kathy’s words in my mind: This is a great gift. Be thankful. Foster families are the heros of the adoption world. This is a great gift. Be thankful. Foster families are the heros of the adoption world…..
We met our daughter the next day, a charming and developmentally on-track little 11 month-old. She was absolutely perfect. And I was thankful, oh so thankful for her foster family, truly heros of the adoption world.
So on our visit to the orphanage, I brought my little gift of jewelry, feeling it was silly and inadequate and wishing I knew what they really wanted or needed. We spoke with the orphanage director and she said they could not divulge the name of the family, or supply a photo of them, or facilitate contact. She did say that they are kind people and an experienced foster family.
Now it was time to leave and I wanted to write a note to go along with the gift. The translator had pulled out a piece of paper only slightly larger than a credit card. She stood waiting, looking toward the door where everyone else had already gone.
“Thank you,” I said quickly. “Tell them thank you.”
“Xie Xie” she said, writing.
“And that we’ll always be in their debt.”
She looked confused.
I tried again. “That we can never repay them for their kindness.”
The translator nodded and wrote, nearly filling the paper. “Anything else?”
“Yes, ” I said. “We love her.”
She wrote the characters. “Very good,” she said, folding the paper and placing it in the box.
On the bus, on our way to lunch, I looked at the envelope of pictures the director had just given us–pictures from every month she was in the orphanage, and starting at nine months, pictures from the foster home. The difference was startling. Yes, the environment had changed, but more than that, the pictures showed a change in our daughter. The blank expression was gone. She was eager and happy. Her eyes sparkled with a light that hadn’t been there before.
The photo below was taken on the day she left the SWI. In the orphanage, staffed by kind and loving women, whose work she did not affect, she never smiled for the camera.
In her foster home, I get the impression she affected their work, oh just a little bit. Either waiting for someone to give her a ride…
….or sitting in the middle of the desk. The desk, which I noticed held photos of other babies, presumably others babies they had also loved and sent off to permanent homes.
And because these babies knew what it was like to give and receive love, they were better prepared to meet and attach to their new families.

There truly are no words to express the gratitude that I feel for them, these heros of the adoption world. All I can say, with sincerity and a horrible American accent, is Xie Xie. From the bottom of my heart, Xie Xie.

Whatever Wednesday

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.

When all else fails: Get on your knees!
adoptive momma (China) Rina at Bringing Home Myah… navigating a year of trials as they struggle to get their daughter the medical care she needs

Freak Show and And I Came to Realizeadoptive momma (China) Shirlee McCoy at And Then There Were Seven… overhearing a recent conversation at her daughter’s dance school sets this momma’s blood to boiling, but then she realizes something important

Testing Again adoptive momma (China) Cheri at Infinite Love… her daughter’s therapist recommends another test, this time for autism

The Long and Winding Road: Day 11adoptive momma (China) Robin at Tea For Two… pictorial diary of a therapy session

bye bye Tonsilsadoptive momma (China) Sharon at In the Light of Eternity… describing her son’s upcoming tonsillectomy, which will be performed before his p-flap surgery

Avatar and other movies with disabled people momma Ellen at To The Max… two movie lists: ones that have characters who happen to have a disability of some kind and another list of movies where the main storyline centers around ability/ disability

A special need defined: Giant Congenital Nevus

*I wrote this post back in March 2009 shortly after we were matched with our new daughter Ava. Ava’s special need is Giant Congenital Nevus. I have added some additional detail now that she is home.**

I have had several people email me requesting that I post some information about Ava’s special need. A commenter suggested that I should provide some information in the hopes that it may assist another family in accepting a child with a special need like Ava’s.

Ava’s special need is called giant congenital nevus. The plural of nevus is nevi. Essentially, Ava has a large birthmark on her face and scalp as well as some large birthmarks on the trunk of her body, her arms and her legs. A birthmark is skin that is highly pigmented with melanin. Melanin is human pigment. Normally melanin is distributed evenly throughout the skin. In instances of congenital nevi, the pigmented cells are not evenly distributed. When many of these types of cells are clumped together, they can result in moles on the skin because of the higher concentration pigment.

The term congenital is used if the birthmark is present at birth. One in every 50-100 people is born with a small mole. Moles can be very small or they can cover a very large part of the body and be so large that they are diagnosed medically as “giant nevi.”

A nevus is considered large if it covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand. The term giant is also used when describing nevi. By definition, a giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi are smaller nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth.

Approximately 1 in 20,000 newborns is found to have a large congenital nevus. Large congenital nevi form in the womb very early in development, within the first twelve weeks of pregnancy. They are caused by a defect during embryologic development. There is no known method of prevention. They appear in either sex, in all races, and on any areas of the skin.There are several characteristics of nevus skin. Normally, nevus skin has fewer functioning sweat glands and too little fat where the nevus is located. Besides producing increased pigmentation, the area covered by a nevus often produces increased amounts of hair. Large nevi can also be delicate and tear easily. People with large nevi also have a higher risk of skin cancer however the medical community is unsure of how high the risk actually is. The risk of cancer is the main concern with congenital nevus.

In a small percentage of cases, pigment cells can be found in the brain and spinal cord which is a complication of large nevi called neurocutaneous melanocytosis (NCM). I would have to say that this is the complication that most parents of children with giant nevi are worried about.NCM can cause neurological issues. Studies have shown that most individuals with NCM do not develop neurological issues however those with neurological issues can have complications that are very serious. An MRI of the brain and spine can rule NCM out. Most professionals consider NCM to be a rare occurrence.

Currently the best method for removing large nevi is surgical excision by a plastic surgeon. Adjacent skin is stretched using a technique called “tissue expansion. During tissue expansion a series of expanders which look like deflated balloons are surgically placed under the skin. At regular intervals the expanders are slowly inflated with saline. The inflation of the expanders can take as long as 4 months. As the expanders are inflated the skin will slowly begin to stretch. When the skin has stretched as necessary the nevus will be excised and the expanded skin is used to cover the area where the nevus was removed.

This procedure has a very high success rate and after looking at before and after pictures I was stunned! This is something I am struggling with… we have every intention of working towards having Ava’s nevus removed primarily because we are concerned about the risk of skin cancer. On the other hand… her nevus is such a part of her… of who she is. It will be an emotional time on many levels.

I found the most fabulous support group called Nevus Outreach. The group consists of family, friends and medical professionals who are dealing with congenital nevus as well as individuals who have congenital nevus. We have been able to locate 2 doctors who are very highly skilled at treating facial nevus. I have learned so much and I have actually found several families who have adopted from China on that group!

This special need is consider moderate to severe primarily because of the treatments necessary to remove the nevus. A high percentage of children with this special need have no additional medical issues. I have had people tell me that her special need looks overwhelming. It may look like that on the outside but once your heart is invested… that special need just becomes a part of who they are.

Now that she is home I can tell you with my whole heart that we truly don’t SEE her nevi. We see Ava’s beautiful eyes, her full cheeks, her vibrant smile and her silky hair. That nevus just fades into the background… which is exactly how it should be.

taking down the "adult adoptee" post

In the interest of this site, I took down the post about the “adult adoptee”.

I would like to say that I am no expert and as I said in the original post, “maybe I’m naive and am missing a valid point”.

for those of you who know me, you know that I am the first to raise my hand and get in line, eager to learn. i love that adult adoptee sites exist and that there is so much literature for me to delve into… i’m eager to understand.

i am for adoptee rights and understand much of their perspective. i stand by my belief though that ultimately we do have a choice in how we move, breathe, and live in this world and that what we suffer has the power to transform us – if we let it- for the better.

i appreciate the heated discussion. i’m glad we’re talking to each other. i don’t think it’s necessary to be disrespectful. i’m just one little human in a large, complicated, puzzle. like you- all of you who commented- i struggle to find the right balance for my daughter and want to give her the best opportunities possible. i want to embrace every part of who she is- grieving, joyful- no matter what. i want to understand what she may face as she grows.

thank you for letting me share a bit of Hopgood’s story with you. as i said in the post, i realize her case might be rare… but it’s good to know there is a wide range in the human spectrum of our life experiences.

i hold no ill feelings toward anyone who slammed me. what’s the point of being here if not to hash out our opinions? i just hope we can come to a common ground without continuing to flame one another, and realize that we’re all just muddling through this in the best way we know how.

i’ll be the first to hold out my hand…. and I apologize for offending anyone. i will never claim to understand the challenges the adult adoptee faces, i’m not one. but again- i will continue to try to bridge that gap as much as it can be bridged.