by Paige, mom to Lilah from China with a SN of Tessier Cleft

In April 2007, while attending a ladies morning out program, an advocate from Compassion Canada came and spoke to us about international adoption. While sitting there, God spoke very clearly to me and told me “It is time”.

I immediately went home and began researching international adoption and Christian Adoption Services. I very quickly was led to adoption in China and it instantly felt like the right place to be looking.

It took me five days to talk to my husband about what I was feeling, but when I did he was more open to it than I had expected him to be. (I had been praying for five days for God to open his heart to what I had to say). My prayers were answered. He took a few days of praying and thinking, and his heart was opened and he and I could be completely excited about this together!

I have always felt we would adopt at some point. It was something we talked about doing “someday” quite often. After having four kids, it felt like we should be done. God had other plans for our family… The moment he told me it was time, I felt ready in every way and knew there was an empty spot in my heart for this new little girl.

The wait time is almost unbearable… We were logged in the regular program September 25, 2007 and slowly the wait time grew and grew and it looked possible we wouldn’t see our daughter until 2015! In May 2008, we switched to the waiting child program and we were instantly comfortable with our decision and all it would entail. We were told at that time that our wait would be about a year. In July, CCAA changed the way they did the waiting child program and we found out that suddenly we were at the “top of the list”. Since then there have been a few bumps which were very hard to deal with, but we knew that we will see our daughter in God’s perfect timing.

In January 2009, we finally got “the call”! When I saw her I wanted her to be the child I was waiting for, but was not sure how my husband would react. Her paperwork stated that she had a cleft lip and a right eye deformity. When we went over the paperwork together we felt completely overwhelmed and weren’t sure if this type of medical condition was something we could handle.

God gave me a verse that day in my devotions. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart. — 1 Samuel 16:7. After talking to some family and close friends and just taking some time to think, we sat down with each other and told each other that this was the child God meant to join our family.

My husband is a Plastic Surgeon, and so we had asked for anything Plastic Surgery related. When he first looked at her picture he knew that is was more complicated than her paperwork indicated and that there would be many unanswered questions until we could get her home and seen by many different doctors. Lilah was born with Tessier 4, a unilateral craniofacial cleft that runs from her lip, up along her nose and into her tear duct. These clefts are numbered from 0 -14 to indicate the location and extent of the cleft. Tessier clefts involve not only the mouth and the nose, but also the rest of the face. It may involve a split in the bones and skin or a misshapen facial feature.

We went to Gaungzhou in May 2009 to get Lilah. She had been in the care of True Children’s Home since she was three months old. She had surgery to repair her cleft lip when she was eight months old and was then placed into foster care (which was overseen by TCH). Lilah had just turned two years old. Her adjustment to our family has been amazing, but with a few bumps along the way! She is a very strong willed and smart little girl. She is doted on by her parents and her four older siblings!

There was a lot of issues that her paperwork never mentioned. She has a very misshapen head, but it has nothing to do with her cleft. She is iron deficient and has been put on supplements. Her cleft is not genetic and shouldn’t be an issue when she decides to have children of her own. She is very small, but because everything is proportionate, the doctors are not worried about it. We weren’t sure if her palate was affected, but it is not.

We are still waiting to see what and when her surgeries will be. But they will be big. She now wears glasses, as her right eye is very farsighted. The next step is to get a CT scan to see exactly what it looks like under the skin. The first surgery will be to build up the bone in her cheek, and at that time they will put in a tissue expander to stretch the skin, so that they can repair and make a new lower eyelid. At this point, I don’t have a time frame for her surgeries, we are taking it one day at a time and one step at a time.

But I do have to say this… Lilah is amazing. She learned English within the first two months and speaks in full sentences and can carry on a conversation. Her speech is clear. She has great motor skills and tries to write letters and draw shapes. She runs and spins and dances. She is very affectionate and loves to be held and read to. She is now potty trained and she sleeps like no other child I have ever had! She does look different and the biggest adjustment has been how to deal with the stares from strangers. But, we have not had to deal with speech therapy, developmental or physical delays of any kind. She is a perfect, healthy, intelligent and beautiful little girl. What a gift!

Feel free to visit our family blog here!

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.

Adopting Cleftadoptive momma (China) Jean at There’s no place like home… sharing their cleft surgery journey (both past and future) with their daughter

We’re Home!!!! and Liquid/ Soft Food Dietadoptive momma (China) Sherry at Our Adoption Journey… an update just one day after cleft surgery

Visit to the Cardiologistadoptive momma (China) RedMaryJanes at The Seventh Diamond… a recent visit to the cardiologist reveals some news about her girl’s heart

Choosing Your Child
adoptive parents the Straights at Straight Talk… navigating your emotions during the special needs adoption process

and some will be a test
adoptive momma (China) Kris at Tell Her This… describing a day of invasive medical tests

arrested developmentadoptive momma (China) MAMA D at the life that was waiting… practicing separation in the face of anxiety

It’s the little things…
adoptive momma (China) Annie at Cornbread and Chopsticks… a momma finds that dealing with food issues is much more difficult than their daughter’s medical special need

P-flap vs. z-plasty adoptive momma (China) Sharon at In the Light of Eternity… facing a surgery decision, a momma asks for advice

From Uncertainty to Confidence: Learning about HIV adoptive momma (Ethiopia) Lisa at the group adoption blog Grown In My Heart… conquering their fear, a family decides to adopt a child who is HIV+

How Can I Adopt A Precious – Maggie, Josie Love, Abe, or Liam ?

This post has been written in my head for over a year and it is just time to write it … The problem is I am truly writing it to the choir, but my heart has been aching lately and I need to cleanse my heart …

I will never forget bringing Emily home (our first adopted angel) … She was breathe taking, smiling, happy, attached easily, and simply adjusted with ease … The following were comments that I received daily …. “Oh, if I could adopt an EMILY, then I would adopt tomorrow,” “If I knew I could get an EMILY then I would start the paperwork,” “Why don’t you just give me her and you can go back and adopt again,” or “If could adopt one that looked just like EMILY then I would do it.”  … I don’t think any of these people were trying to be cruel or insensitive, but the words are exactly what is wrong with our culture … Adopting is not a beauty contest, a status symbol, or something to do – Adoption is a call from the Lord  …

My precious Maggie came home with more than one issue to deal with and I have aged, gained weight, lost hundreds of hours of sleep, and been drained of every ounce of grace in my body, but the joy of obeying the Lord is priceless … The miracle of watching her heal … The joy of being called this precious angel’s mother is a gift from the Lord because I was obedient … Maggie has been the one to draw our family closer to the FATHER because she helps us to focus on His will for our life and not people expectations of us, societies pressures to fit in, or the crazy media standards… She may not smile at a stranger, run into your arms and make you feel all warm and fuzzy or even look you in the eye, but if you take the time to get to know her and understand her journey, then you will grow as a person, you will learn more about the Lord, and you will receive the true gift of trust that you hear in her laugh and giggle !!!

I know many people right now considering adopting a SN angel and I want to encourage you to look deep into the FATHER’s heart and find His will for you … In the beginning, I was the one time trying to figure out what SN could I handle and that is seriously a joke … I can’t handle anything, but with the Lord’s strength, grace, and love, I CAN DO ALL THINGS !!!

When we started the adoption process again to Uganda for a son and a daughter we marked the box healthy because again we felt our hands were full with all that Maggie needed (and honestly scared) and when the call came and our precious son was almost completely deaf and very delayed, the answer came quick… He said in His quiet still voice “Will you do this WITH ME” …. God was calling us again to walk with Him … How could we say no … Now we are literally overjoyed to be CHOSEN again to parent a SN angel … We are falling in love daily with our son and daughter waiting for us in Uganda !

I tell you today that some of our most precious prayer time is spent praying for the special needs angels in our life … Josie Love (HIV +, just learned to walk, and can’t see very well @ 4 yrs old), Abe (missing his frontal brain lobe and can barely move or communicate),  and Liam (trapped within himself and struggling daily to cope ) … These are just a few of the children, who bless us … If you think their days are easy or a picnic then think again, but they understand the honor it is to parent their children … Our children teach us of the Father’s love … Our children teach us of the Father’s creative powers … Our chidren teach us of the Father’s healing !!! THEY ARE SURVIVORS and we could learn a lot about who our heavenly Father is by loving them, getting to know them, praying for them, and showing others that this is not a sacrifice, but our privilege … Remember a sacrifice is giving up something you need for NO gain  !!! I receive more each day than I deserve from my precious daughter … Just the look in her eyes that she now knows she is safe and loved is sometimes more than my heart can handle … Thank You Maggie !!!

So my prayer is that more people will find their path to a SN angel and see into the face of  God !!!

Blessings, Gwen

Celebrating Miracles

January 22nd had been circled in red on our calendar. It was a Friday, and like all Fridays before it during the past year, that meant an interferon shot for Cholita. Wednesdays meant blood work, Thursdays meant lab results, Fridays meant interferon; it was the rhythm of our weeks during 2009. But this Friday was different; it was her last shot and we planned to celebrate. Based on her past labs and based on conversations with her doctor, we were not celebrating treatment success, but instead celebrating Cholita’s amazing resilience, her patience, and her strength. When the nurse had told us months before that it was obvious Cholita had failed treatment, I fumed. My daughter had not failed treatment. The treatment failed her. It felt like an important distinction.

And so we’d celebrate Cholita’s triumph; labs be darned. And since this was her day, she was allowed a rare pleasure–she could wear any outfit of her choosing in public.

We ate pizza, we played games, and our little girl who’d had well over one hundred needle pokes in 2009 smacked around a syringe-shaped pinata. It seemed therapeutic.

Cholita blew out 12 candles on her cake, one candle for each month of interferon.
And we went home happy, refusing to acknowledge the nagging sense of disappointment. “I have no regrets,” I told my husband later that night. “We did all the research we could have done. We knew the odds going into it. We’ll find something that works.”
I thought back to a year earlier, a few hours after Cholita’s first shot. One minute she was fine and the next she had a high fever and screamed over and over, “My body hurts!” I thought of the first time I had to give her the injection. My husband, the shot-giver, was gone with our son’s Boy Scout troop canoeing near the Canadian border and I had no choice. I sat with her on my lap, my hand shaking as I held the syringe. “Just do it!” Cholita said, rubbing her leg with the antiseptic wipe. Soon the wipe dried up. “Ugghh,” she said. “Now I have to get a new one.”
Two wipes later, and still I couldn’t do it. We heard music from the next room; her sisters were watching a show and Cholita wanted to join them. She sighed and rolled her eyes. I breathed deeply. Finally, I looked away and dropped my hand down. The needle didn’t go in, just bounced off her leg, and a trickle of blood ran down her thigh. I wiped it off, angry at my own squeamishness and leaned in close to see the hole I’d already made. Determined to not inflict two wounds on my daughter in one sitting, I did what seemed logical at the time but what even my four-year-old could see was a bad idea. I set the needle down on the hole, closed my eyes, and pushed. By this point, months into her treatment, she had some scar tissue and it took more force than I’d guessed. I kept pushing until finally it went in, accomplishing what had to be history’s ugliest injection. Before Cholita ran off to watch her show, she patted me on the back and said, “I’m proud of you.” I dropped the syringe in our sharps container and prayed that this would work, that it wasn’t all in vain.
Two days before Cholita’s party we had her final blood draw. The nurses at our local hospital hugged her; we’d brought them flowers, one of them brought Cholita a serrated grapefruit spoon. An odd gift for a four year-old, yes, but in the course of their conversations throughout the year they’d discovered they shared a mutual love for a tart zing in the morning and Cholita was thrilled with the gift. It would take a week for her viral load result to come in. At last count it had been 27 million. I didn’t need the doctor to tell me that wasn’t encouraging.
I went to pick up the final results during Cholita’s preschool time. I’d accepted the fact that the treatment hadn’t worked, but I wasn’t sure I could completely contain my emotion when faced with the irrefutable evidence. Cholita, just happy with her grapefruit spoon and shot-free Fridays, didn’t need to worry about why her mother was crying.
The nurse called the lab for the results and soon the fax machine hummed and my palms went sweaty. The nurse handed me the papers with a sympathetic smile. I walked down the hall to an empty spot. I scanned the labs until I found what I was looking for: HBV VIRAL LOAD–the place that was always followed by a number containing lots of zeros. This time there were no zeros. This time there was no number.
I screamed and immediately started to cry. The nurse jogged over from the nurse’s station and fanned some papers in my face. I think she was afraid I would faint. “Is it bad?” she asked. I shook my head. “It worked.” My voice was barely a whisper. I said it again, more loudly than I anticipated, “IT WORKED!”
I went to my car and with my forehead on the steering wheel, said a prayer of thanks. Never have words felt so inadequate. It worked. I looked at the labs again. I checked the name on top. I read it again and again. And then I saw something else. HBeAG, the “e” antigen which shows that the virus is replicating, the antigen that has always been positive on Cholita’s labs. Now it said HBeAG: NEGATIVE. I cried some more.
When I told Cholita the amazing news later that day, she said, “Awesome…..can I watch a video?” She is, after all, only four.
And being only four, as she grows older she may not even remember her year of shots. But I will remind her, especially when she’s faced with trials, that when she was tiny, she went through something hard and she did it with grace. I will remind her that she’s strong and that she’s a fighter. And I will remind her that even when the odds seem insurmountable, God can accomplish miracles.

Fitting In

You probably think I’m going to tell you that my adopted Chinese daughters are represented by that lonely red flower but if you guessed that, you’re wrong.

My girls are actually better represented by the two lovely yellow ones (no pun intended) in the upper left. Can you spot them? One is taller than the other and they’re both standing happy and proud right next to each other. Just as you’ll almost always find them here in the real world.

At first glance, the yellow tulips all look the same. But are they really the same? If you look closer, you’ll see that they have different sizes and shapes. Some bloomed sooner and are already starting to fade while others are still waiting for the perfect moment to show the world what they’re made of. Many have imperfect or broken or missing petals. Some are so tightly clumped together that they nearly disappear completely in a bright blur of yellow while others seem to prefer to stand all alone.

I thought about this photograph when Gwen and Maddy brought home their Kindergarten class photo last week. I quickly scanned all of the little faces for my two sweet girls and then I took a moment to stand back and examine the entire class photo in a bit more detail. My girls have been talking about most of these kids for months so it was fun to finally be able to put the faces and names together.

The first thing I noticed was that most of the kids were Asian. I always sorta knew this (since we researched the school before we moved here) but didn’t realize the ratios had grown to be this wide. I specifically looked for Caucasian kids in each class (my girls are in different classes) and I only spotted one. All of the rest of the kids were quite obviously Asian or Indian (one or two Black or Latino). Really, I’m not good at guessing but I’d say that the overwhelming majority (75% or more) were clearly Asian while the rest were Indian and a tiny fraction (like one or two kids total) were something else. Only one was unmistakably Caucasian and I couldn’t help but wonder how it was going to be for THAT kid growing up.

What does this mean to my kids?

I think it means that they are the ones who will have to be tolerant and open minded and accepting of classmates who are “different” (instead of the more common situation in International Adoption that it be the other way around). I’m glad my girls will fit in — in almost all of the immediately obvious ways — but I also hope they’ll be kind and compassionate and make the red flower kids feel like they belong and fit in too because some of those red flower kids will discriminate against them when the tables are turned. And the tables will turn constantly.

The world is much more multi-cultural than it was when I was growing up but that doesn’t mean that kids will automatically embrace all of those differences. My husband and I have a big job ahead of us because our girls won’t always be able to blend in. We need to prepare them for that. But we also have to prepare them for the reality that other people will feel like they’re unaccepted too. It’s a big job and I hope we’re up for it.

More about us at Double Happiness.

standing {out} for {something} good

Wanted or unwanted, being a transracial family means we attract attention.

Just today, my girls and I were eating lunch when an older lady sitting nearby asked, “What part of Asia are they from?” and then asked if she could give each of my girls a dollar bill. We kindly accepted the monetary gift even though it felt a bit odd. My daughters were delighted to get a treat but I was left wondering what motivated her actions. Would she have still done this if my children were white or if I were Asian? There was another young mom and her toddler that did not receive any attention from our fellow diner.

Living in a very homogeneous part of the country, we are used to standing out. Most of the attention we draw is from prospective adoptive families or fellow adoptive families. Then there are the well wishers that want to say something to affirm our decision to adopt internationally. Even if their wording may not be well crafted, I try to be polite and thankful in my responses. I’d rather affirm them for their ability to recognize adoption, which I hope is the first step to understanding the blessing of adoption. Our family can show the world that adoption is what we wanted… not what we ended up with as some still believe.

I didn’t always like being in the spotlight but now, like it or not, I am an ambassador for the adoption community. While most of the attention and comments are kindhearted, there have been some that were motivated out of banal curiosity or worse racial prejudice. Thankfully these incidents are few and far between, but now that my oldest is 5-years old, she remembers them with great clarity…more importantly she remembers how I handle myself in these situations.

While playing at our neighborhood park last year, a young boy called my daughter a racial slur directed toward Chinese which I won’t repeat. He also insisted she must be a laundry maid because her hair is black. Since he was maybe 5-years old, I’m guessing his poor opinion of Asians and Hispanics was taught to him by his parents. And because he was at the park with his less than observant nanny, I couldn’t even speak to a parent to address his terrible behavior (which wasn’t limited to his mouth). So I did the next best thing and spoke with the boy directly and told him that this is a place to have fun, not be mean, and that his comments were hurtful and cruel. I thought about leaving at that moment, but decided to put my daughter on the swings where she would be “safe” but still enjoy her special trip to the park.

I never had to deal with these issues when I was a child. I spent 30 years of my life blending in. With the exception of living in Japan, I have always been able to disappear into a crowd of Caucasians. Nothing about my hair color or height is remarkable, but when I became a mom of an extremely outgoing Chinese baby, I discovered I would never be in the shadows again. And frankly, I’m okay with that, because if one member of my family is going to stand out, I want to make sure she isn’t standing out there alone.

There are things that make each of our families unique. Some differences are visible, such as transracial adoption or a special need, but most are less visible, such as our values and our beliefs. Our family and our children will always be noticed in some way. When we do stand out, I want to stand for something good. I don’t want others to just see charity for an orphan (which may have prompted the $1 gifts). I want them to see the joy of adoption, the genuine love of a mother for her children and the blessing of those children. It is a message all parents can portray, but as we stand out in adoption we have more opportunities to say it.

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.

what’s black and white and grateful all over?adoptive momma (China) MAMA D at the life that was waiting… grateful to their school crossing guard after a conversation with her daughter, who has albinism, about melanin

Looking for answersadoptive momma (foster care) Julie at Not Just an Ordinary Life… a canceled MRI because of a last minute realization

Diagnosis: Stereotypymomma Janice at 5 Minutes for Mom… describing the condition stereotypy and how they came to diagnose it in her daughter

Problems with the Special Needs List
adoptive momma (China) the Rumor Queen at China Adopt Talk… describing what she’s heard about the inequities within the new system

An Update on Mr. Lukeadoptive momma (China) Sherry at Our Adoption Journey… a recent visit to the cardiologist yields some great news

Z. Is Z. Is Z.
an adoptive momma (China) at grrlTravels… an update about her daughter Z. after having a recent conversation with her husband

Memory Monday
adoptive momma (China) Sandra at The Daily Grind… looking back at the therapies first required after a cochlear implant surgery

let’s talk about talkingadoptive momma (China) BBMOMOF2BOYS at Baseballs and Ballerinas… a recent meeting with a private speech therapist leads to a diagnosis of verbal apraxia

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.