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.

Our first birthday together!

Last year she celebrated with her beloved foster mama.

This year she celebrates with her forever mama and forever family! ;) Thank you Jesus!

We brought our 7 year old, Candie, home on Halloween of 2008. Her birthday is 8/23/00. Her special need is bi-lateral microtia/atresia. Candie is a happy little girl and for that I am very thankful. Most of the time she is kind, caring, helpful, and content. What a blessing!

Do not believe that it is all sunshine and roses though. She has her moments like all kiddos. Actually, I’ve been reflecting a lot on the past 11 months with her…

When we first adopted her, the transition was perfectly seamless. She fit right in with our crazy bunch. Even though she couldn’t hear well at all, she seemed to understand our gestures and our communication consisted of mainly that–gestures. I knew she couldn’t hear within normal limits (Candie’s SN is bi-lateral microtia/atresia) until she would be fitted with her BAHA (bone anchored hearing aid) and so I never pushed her to speak clearly or learn a whole bunch of words. Her speech was unintelligible even by our Mandarin guide in China and translator that we had here in the States. So…what’s a mom to do? We grinned and beared it. And we played and smiled and yelled so she could hear us.

In March she was fitted with her BAHA and in April she began speech classes. The speech therapists at the HEAR Center for hearing impaired children assured me she was at an infant/toddler level of speech because her “hearing” age was so low…she had only been hearing well for a month or two. While wearing her BAHA, her hearing is well within normal limits. So subtract one negative impact on her development…she can hear now! Hooray! But her speech would take a LONG time to develop. On top of that, she’s learning a whole new set of vocabulary….in a whole new language. Whew!

I contemplated sending her to school instead of homeschooling her. I felt like her needs may be more than I could help her with…but the school therapists suggested I home school her. They said she would be placed in a 4th grade classroom and be SO BEHIND. (wow, they were SO right)

So May came and went and I did Candie’s speech homework with her faithfully. I also tried teaching her some academics but her vocabulary was so low, she just wasn’t ready. I resigned that I would begin her in Kindergarten in homeschool in the fall. Candie continued attending private speech therapy all summer and we worked diligently with her at home. DILIGENTLY. ALL of us. It became a full time job for the family. Teaching Candie English.

In August she resumed her speech therapy at the elementary school putting her up to four speech classes a week. We do lots of speech homework everyday. And I will be honest, it’s taxing. Downright frustrating at times. I know her auditory processing skills are “off”. She cannot repeat what we say if it has more than two syllables. She cannot recall verbal directions. I know a lot of this has to do with her “hearing” age. She has never really had to listen closely to anything in her whole life. Now that she CAN listen, she has to be TAUGHT to listen. To hang on every word. She doesn’t like having to learn new things. She pouts and shuts down and gets very discouraged. And so do I, frankly! I want her to persevere and try…but she is so content staying in her world of playtime and not school-time. I knew academically that she was very behind, but since starting kindergarten work, I’ve really been hit with the reality of it.

I have a 9 yr. old daughter who only knows half the alphabet, can’t count to 20, and can’t hold a conversation.

BUT THANK YOU GOD…she is home. She is with her family. We love her too much to allow her to remain the same little deaf girl that she was in China. We push her, we make her try, and we reward her greatly for her efforts! We tell her we love her and that we want her to be able to talk and learn and succeed! We go over and over and over and over and over her speech homework until she “gets” it. Even if that means we are late going somewhere. We don’t give up on her. We desire her not to give up on herself.

Hmmmm…as I’m typing that, I’m reminded of how much the Lord does that for us. What a parallel.

Me: “Candie, I don’t want you to be complacent about your school—(not like she understands that word…but I did tell her that one day b/c I had to get it off my chest, ya know?)
Jesus: “Laine, I don’t want you to be complacent about two areas of your life that you have left undisciplined”

Me: “Candie, I’m helping you learn this because I love you. Sometimes it’s not easy. You just have to try.”
Jesus: “Laine, I’m helping you learn this lesson because I love you. Sometimes it’s not easy. You just have to try”

Me: “We are going to keep going over this until you get it, Candie!”
Jesus: “We are going to keep going over this until you get it, Laine!”

Me: “Candie, I love you too much to let you play around and not keep trying”
Jesus: “Laine, I love you too much to let you stay the way you are.”

Me: “That complaining is not acceptable. You need to be thankful, Candie.”
Jesus: “Your complaining is taking your eyes off of me, Laine…be thankful in this.”

Me: (to Rob) “I’m so tired of having to correct my daughter’s speech all day long”
Jesus: “I will never get tired of sanctifying and refining you, daughter.”

What a Mighty God we serve! How He shows us our own heart issues through our children! Thank you Lord. What love…

To sum up this post, I will say that the first six months of Candie’s adjustment have been much easier than the second six months. Her attachment to us is still strong and sweet as ever, but the academic and language issues have been a hurdle we’re learning to jump over. We may fall down, but we know with the Lord’s sweet Hand as our guide, we will pick ourselves up and keep trying!

(Just to add, this post was written in Sept. 2009…and since then she can now count WAY over 20, knows ALL her letters AND sounds, is reading three letter words, can understand more of what we say and can make 4-5 word sentences! But most importantly, she is gaining confidence, assurance, and security in her abilities. GO GOD!)

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.

My Silent Boyadoptive momma (China) Shanna at Our Big Crazy Family… navigating life with a child who has apraxia

Our Journey to Sienna Graceadoptive momma (China) Diana at First a Pearl, Then Two Rubies… a story of how child sponsorship leads to adopting a child with special needs

Snow!!adoptive momma (China) Cheri at Infinite Love… snow photos and an update on her Lia, who has cerebral palsy

Doctors Appointmentsadoptive momma (China) Amy at Finally a Family of Five… a doctor’s appointment (with a blood draw) takes a mom back in time to the first year of her (bio) son’s life, which was fraught with worry as the doctor’s tried to identify his special need

Speech Therapyadoptive momma (China) Sherry at Our Adoption Journey… describing the first speech therapy session for her daughter, who still has an unrepaired cleft palate

Sensory Processing: Our First Steps and My Learning Curve: Match My Voiceadoptive momma (Ethiopia) Thankfulmom at A Bushel and a Peck… describing her son’s first appointment with an occupational therapist at Seattle Children’s Hospital

A Beautiful Smileadoptive momma (China) Super Mommy at Me and My Two Chickadees… chronicling week one of her daughter’s orthodontia treatment, including a palate expander

The Trooperadoptive momma (Ukraine, Russia and Siberia) Christine at Smiles & Trials… a photo story of her son’s recent cranial-facial surgery

Photo of the Week: Amazing Changesadoptive momma (China), as well as executive director of Love Without Boundaries, Amy at A Life of Giving… before and after photos of two children who recently received cleft surgeries

The Puzzleadoptive momma (China) Nicole at The Baker Sweets… her four-year-old son hits an important milestone and completes his first puzzle

Me Museumadoptive momma (China) Kim K. at Musing from Kim… creating a poster for school takes one momma down memory lane

Please Don’t Pity Him: A Word From A Mom Of A Kid With Special Needs
momma Ellen at the Storked! blog at Glamour… a plea for others to stop pitying her and her son

Different Kinds of Sensory Issuesadoptive momma (China) the Rumor Queen at China Adopt Talk… describing the differences between her two daughters, one with sensory-seeking sensory issues and the other with sensory-avoidance tendencies

No, She Doesn’t Have Red Eyes

That’s what I said to my mother-in-law last week.

Six months since Cheeky joined our family, and this stereotype of pasty-white, red-eyed people with albinism is just coming out and just being addressed.

I’ve been thinking about that all weekend.

My mother-in-law lives on the other side of the country. She’s never met Cheeky face to face, but I’ve emailed photos and invited her to read my blog. It isn’t like I haven’t tried to include her in Cheeky’s life. It isn’t as if I haven’t tried to help her feel like Cheeky’s grandmother.

But from the beginning of this journey we have danced a strange tango, the two of us. She wasn’t happy about the adoption, less happy to hear we’d be adopting from China. When I announced that we were entering the special needs program, her silence spoke volumes. My parents were silent, too. So was my younger sister, the one I have always felt closest to. Special needs and we already had four kids? Four healthy kids.

No one wanted to say it, but I knew what they were thinking – You don’t know what you’re getting into. What if things go wrong? What if you bring home a child who is just too much to handle?

My husband and I moved forward anyway. My parents began to talk, my sister began to talk. They asked questions, they said wonderful things and stupid things and things that I will never forget because of the sheer beauty of them, and we have all moved forward to Cheeky together.

But my mother-in-law has been left behind.

She sent money for Christmas, and I brought the kids out to let them spend it. When we returned home, I phoned my mother-in-law and let the kids thank her and tell her what they’d bought. I hovered a few feet away as my eldest son handed Cheeky the phone.

“Hi, Grandma!” she said in her cheerful, chirping voice. And then she proceeded to tell my mother-in-law about the strawberry shortcake doll and the dress she’d picked out. She ended with, “Thank you very much. I love all my stuff. I love you.”

Even the hardest heart would surely melt at the sound of my daughter’s sweet I love you. And, despite her seeming unwillingness to be part of this journey, my mother-in-law has never had a hard heart.

Cheeky handed me the phone, and my mother-in-law said, “So, how do you say her name? I keep forgetting”

And we began to talk about Cheeky’s Chinese name and why we chose to keep it, about her foster family, about the surgery that Cheeky had in September, about Cheeky’s eyes and how they would never be perfect but how that doesn’t stop Cheeky from achieving great things.

And that’s when my mother-in-law mentioned that people with albinism have red eyes.

“No,” I said. “They don’t.”

“But I’ve seen one. He was really white and he had red eyes.”

“People with albinism have green eyes and blue eyes and even brown eyes. Sometimes their eyes are violet. Cheeky’s eyes are pure blue. In some lights they are violet. They are never red.”

“So, her eyes are blue?”

“Yes. And she’s no fairer than son #3.”

“But most people with albinism have red eyes. I’ve seen it.”

And it was my turn to be silent.

This is where the author in me would like to write a happy ending.

But I cannot.

In a perfect world everyone would understand the worth and value of each human life, but our world is not perfect, and people in our lives may be blind to the beauty of our SN kids. We can choose to harbor resentment and anger over that, or we can choose to accept their weaknesses and move on.

After thinking about this for several days, I have come to the conclusion that how I treat those who refuse to accept Cheeky’s differences will impact her life more than their words or opinions ever will. It is, after all, my arms, my eyes, my words through which Cheeky will learn strength and determination and confidence. It is through my actions that she will learn grace and mercy. It is through having a forever home that she will learn the true meaning of love.

I am her mother, her example, her safe place to come home to.

And, so, I let go and I move on.

Happy Gotcha Day, Miss Vivi!

Miss Vivi is finally right where she belongs, in her mama’s arms!
If you haven’t already, please run on over to Stefanie’s blog and leave them some love.
 And check out the video of Miss Vivi while you are there! It will make your heart smile!

Preparing for Surgery …

I know many of us with Special Angels will be spending a lot of time in the hospital, at doctor’s appt, in therapy, and many other places to help our children grow, heal, and get the very best they need to enjoy a happy healthy life … So my encouragement to you is to accept help … I learned very quickly that upon Maggie’s arrival home there would be time that I simply could not get everything done … I could not be every where at one time … I just couldn’t get all done in a day what needed to be done … It is very humbling to accept help … As women we like to think we can take care of all the needs of our family and that gives us a since of pride and purpose … I am here to encourage you that when others call and ask you if you need anything from store, can they bring you a meal, fold your laundry, or pick up the kids for you that you let them !!! Allow them to be a part of your journey … Let them get a glimpse of what your life looks like with your sweet blessing of a child …

I will never forget the woman that came to my home a month after Maggie was home from China … I honestly can not remember her name … She was from our church and I was in a complete fog … I was sleep deprived, still trying to figure out Maggie’s needs, cries, and just simply trying to stay above water … The woman knocked on my door and said, “Hello, I know we don’t know each other well, but I am here to fold your laundry.”  I could have cried … There was lots of laundry and it was in that moment that God showed me what the function of THE BODY OF CHRIST could be to us during this time …

SO SAY YES, when someone calls and allow them to answer God’s calling on their life to walk with you on this journey … It does not make you any less of a woman or mother … It is actually you showing your children how to give and show love to others …

Prayers please for Maggie as her next surgery is scheduled for Jan. 13th…

I have something very serious I am working on for my next moth’s post … It is something that has been ripping at my heart lately and I just don’t have the graceful words yet to write it … I am praying God will show me how to explain it and hopefully help open some eyes and change some perceptions …

Blessings All

A Small Mercy at Children’s Hospital

My four year-old, Cholita is a darling, wonderful girl. She can also be loud and blunt–sometimes bordering on obnoxious. Sometimes she’s way past the border, with her feet firmly planted in Obnoxious Land.
Last year we were in a waiting room that serves several different clinics at a large children’s hospital. It’s the type of place where your heart aches for the hardships some children have to bear, the type of place where you count your blessings. Cholita was sitting at a table, coloring a picture of Barney the Dinosaur, when a little girl of about 4 or 5 sat down across from her. One side of her head showed the face of a beautiful Asian girl. The other side was hugely disfigured. I know Cholita. I know she doesn’t mince words. If she saw her, she’d say something–something innocent but hurtful. I silently prayed that Cholita wouldn’t notice, knowing that she would. Sure enough, she looked up and stared. She squinted her eyes like she was trying to readjust her focus. The girl pulled her hair across the side of her face and looked down at her paper. Cholita leaned over, chest on the table, and peeked up under the girl’s hair. Her mother, seated next to me in an armchair, set the hospital clipboard on her lap and watched. I literally held my breath and prayed. Please don’t hurt this little girl’s feelings.

Cholita settled herself back into her chair and opened her mouth to speak. I moved closer, ready to offer gum. “You want to share my crayons?” she said. The girl nodded and they giggled and passed crayons back and forth. I breathed. The mother smiled, “Looks like you made a friend,” she said to her daughter.

Truly an answer to prayer. A small mercy.

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.

Handling Your Child’s Disabilitiesmomma Marye Audet at Blisstree… on helping your child to navigate social situations with a visible special need

Guest Author: The Dance, Older Child Adjustmentadoptive momma (domestic and Ethiopia) Michele as a guest blogger at A Bushel and a Peck… on the adjustment process after adopting a teenager

The NSN Misnomeradoptive momma (China) the Rumor Queen at China Adopt Talk… just because you adopt through the non-special needs program doesn’t mean you will avoid special needs

To Post or Not to Postmomma Janice at 5 Minutes for Mom… how much is too much information to share when you are blogging about your child’s special need?

Why blog? adoptive momma (China) Donna at Straight Talk… why she blogs about special needs adoption

I miss my Foster Family…

My oldest daughter is a tomboy but you’d never know it by looking at this photo. She loves to pose for me and she’s always full of surprises.

Last week, she was keeping me company in the master bathroom while I was putting on my makeup and doing my hair when her face suddenly got all serious and she announced, solemnly, that she missed her foster family.

“I miss my foster family, sooo much! I really want to visit them but you won’t let me and that makes me sad. I feel like I have two hearts thumping in me.” Then she patted her chest to show me where those two hearts were thumping.

It was sweet and touching and I stroked her silky cheek with the back of my hand and told her that I love her two hearts with all of my one heart. Then I gently reminded her that she doesn’t have a foster family.

Yep, she made it all up.

She was never in foster care in China so she clearly didn’t really miss her foster family. And she knows what a foster family is so there’s no confusion about that either. She was merely pretending. She has a beautiful imagination and frequently tells stories with fuzzy edges between reality and fantasy and this was just another story to her. She probably hasn’t even thought about it again but I sure have.

She doesn’t have a foster family but if she’d gotten that one critical little detail right, I almost certainly wouldn’t have questioned her sincerity about the rest of what she said. But maybe I should be skeptical because there’s a pretty hefty price to pay if I get it wrong.

As I write this, she’s playing in the other room and she isn’t sad or mournfully missing anyone or bearing the weighty burden of any aspect of her unfortunate beginnings. And that’s a relief because, even though my intentions are always completely honorable, I have tremendous power to influence how she internalizes some pretty hefty issues. I can make her believe that she’s suffered tragic and unfair losses, that people on the other side of the world cry for her and miss her and think about her every day, that it’s perfectly understandable that she’d miss them too. And even though all that might very well be true, there’s a pretty good chance that she wouldn’t be spending any time thinking about it if I didn’t make a ritual out of putting it under her nose and helping her scrutinize her feelings about it. In other words, I’m careful not to treat my kids like injured baby birds because they might start believing that’s what they are.

I feel like I should end this with some really enlightening tie-up-the-loose-ends way but I can’t do it. I know it’s a hard subject for many adoptive parents to discuss because most of us want to err on the side of caution and that means we’ll risk delving into these issues prematurely because we think doing it early will make the path easier to navigate later. Personally, I don’t recommend that because I’ve seen many instances of kids crying for lost loved ones that they clearly don’t remember. But there must come a time when we need to wade out into these waters with our kids just so they don’t think we’re uncomfortable discussing these topics. I’m not sure what that age is but I know it’s not 5 and a half. Maybe ten? If anyone with older adopted kids has started discussions about “loss”, I’m curious to know how it went.

As always, you can see the everyday happenings of my cheerful little brood on our family blog, here: http://2happy.typepad.com/