Loving Luke

I entitled this post Loving Luke because before Luke came home from China in May 2007….

he didn’t know love.

He never knew love.

Love doesn’t even capture all of what he was missing.

He wasn’t fed, he wasn’t held, he wasn’t touched, he was totally and completely neglected.

NEGLECT: to be remiss in the care or treatment of; to pay no attention

There was not one person who loved on the boy. Not one. Ever.

So he came home to us as a shell of a person. A little boy so deeply buried in himself that he operated within his own set parameters. He was not willing to let anyone in. Why should he. Everyone had failed him.

We loved Luke. Desperately. And slowly…slowly he allowed us to be part of his life. And part of me desperately wanted OTHERS to love Luke to. Family is obligated to love and care for its own.

I wanted others to assign value to Luke, to invest in Luke, to see great things in Luke.

The doctors and professionals treated him like an anomaly. His past educators gave the minimum and when his progress wasn’t fast enough or consistent enough they backed off. Like the kid was too much work. It was like he was experiencing neglect all over again. Like the message was being repeated to him again and again: you are not worth it.

Until this year.

In September 2009 we switched Luke from an inclusive pre-school classroom to a small elementary school based pre-school classroom. Prior to the school year starting…I was nervous. VERY nervous. Luke had failed to make any progress for the previous school year.

My worry would eat me.

Is this as far as he will go?
Can he not learn and process any additional information?
What does the future look like for him and for us?

And then a few weeks before school started we met his teacher, Ms. Teri.

From the very.first.moment she was vibrant and engaged. She was immediately interested in Luke. She wanted to know all about him. About his beginnings and about his progression since he came home. She got down on the floor and communicated with him.

And because she was interested…Luke became interested.

And over the last year Ms. Teri poured herself into Luke. She was gentle but structured. She taught him from her heart. She invested herself. Luke never experienced that before with a non-family member.

And once he did…a lightbulb turned on.

It was almost as if he knew the people before had no real interest in him.

He’s Intellectually Disabled but he’s not stupid. He feels it. He understands it.

Being able to trust a person outside of family has been instrumental for Luke. He is learning how to trust others. A piece of his protective shell that colored his interactions with people has been torn away.

Because of Ms. Teri.

She taught him more than how to cut with scissors, recognize his shapes, and the ability to identify his written name. She taught him about love. Love outside of family. That is the greatest gift she could have ever given to him. And to me.

My heart needed that and so did Luke’s.

A orphan boy who was unloved and uncared for has a family and now has a small group of folks (Ms. Teri and her team) that completely and utterly care about him.

Luke has come so far.

Because we answered God’s call to invest in him and because we finally found a wonderful person who was willing to do the same.

We all will never be the same.

-Nicole

www.bakerssweets.blogspot.com

Birthday Realities

*** I originally posted this on my blog in Oct 2009.

Our son Luke came home from China in May 2007. ***

Monday was Luke’s 4th birthday. I had planned a light airy post about Luke’s party and how far he has come since arriving home. However, that was not what the Lord laid on my heart.

There is something special about Luke... and I’m not talking about all his “special needs”. There is a certain knowledge. One that we can’t ignore.

See, when we adopted Luke…. his life was truly saved.

Now, most times when people talk about adoption they talk about “saving a child’s life”. And in the larger sense that is absolutely true. You are providing an orphan… a child that has nothing, with a family, medical and dental care, education, food, a warm bed, etc.

And you are “saving a life”.

But what I am truly talking about are the orphans in critical medical condition. The kids with complicated special needs or that have just been ravaged by the orphanage system. Kids that will most definitely die if they are not adopted. Luke was one of those kids. However, we didn’t know this fact until we received him in China. Up until Gotcha Day we thought he was a typical orphanage cleft kid who had acclimated to his life at the orphanage and was doing "OK" waiting for us to come get him. He wasn’t. He was struggling, he was barely hanging on.

He was slowly withering away.

We were told by several medical professionals that if we hadn’t traveled when we did that Luke would not have seen his 2nd birthday.

He would not have LIVED.

He was that dehydrated, mal-nourished, delayed, compromised and frail.

When I think about this my heart is simply....heavy.

Luke’s adoption was when I truly understood what “saving a life” was all about. It wasn’t something we were prepared for. It was something we were thrust in to and it was a big burst of reality for us. To me it was the "other side" of adoption. The side that's not all fairies, rainbows and ponies. It was the heart-wrenching reality of child desperately struggling. And the knowledge that the child was desperately struggling for a long long time. With no relief.

Jake and Kiah’s adoptions had been very typical. Jake and Kiah were both loved, fed and cared for. They were doing well in their respective environments while waiting for us to come get them. Same with Logan and Ava. Logan was in a great orphanage in XuZhou, Jiangsu and Ava… she is at the fabulous Philip Hayden Foundation.

But kids like Luke…. kids who are in desperate situations at their orphanage, kids with diagnosed and undiagnosed special needs….every day is a struggle for them. Every day is spent withering away. Everyday their little spirits get more and more crushed.

Every day they become weaker.

Even though we didn’t know what we were getting into, there is an overwhelming sadness knowing that your child was that compromised and there was no escape for them until you came. So on Monday when we celebrated Luke’s birthday it was with happiness that we have this boy but also with a heavy heart. My heart is heavy for the knowledge and reality of all the children who are in desperate need of a forever family. DESPERATE NEED.

I pray that each of these children find their way to a forever family sooner rather than later. And that God directs all of our hearts to these waiting children so that these sweet young ones can find love, comfort and relief.

www.bakerssweets.blogspot.com

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.

In The Midst of Chaos

**I wrote this blog post prior to leaving for China to get our new daughter Ava. This topic weighed heavily on my heart. I hope that it speaks immediately to whoever needs it.**

Recently there has been a lot of talk about the d-word. The big yucky word that no adoptive parent or professional wants to have to speak about: DISRUPTION. Recently I heard about 3 separate adoption disruptions which occurred just a few days after each family received their child in China. To hear about this was heartbreaking. And although we have never actually disrupted an adoption in China, we have walked through the chaos of receiving a child so sick, so grossly delayed, so not what we expected, so far from what we wanted…. that it was pure absolute gut-wrenching agony and chaos.


And that chaos immediately leads you to a state of panic where fear takes over and you question everything you were sure of just 24 hours BEFORE meeting this child.

And then you speak to yourself in absolute statements:

I can’t parent him.
His needs are too much.
His needs are overwhelming.
His care will tear our family apart.
This is not what we signed up for.

And you’re confused because just the day before you were floating on a cloud of anxious excitement dreaming about Gotcha Day. And now you are wondering how the heck we got to “this place”.


And then the guilt takes over:
I thought I was more loving.
I thought I could handle anything.
I thought I could parent any child placed before me.
I suck.


And then back to here again:
I can’t parent him.
His needs are too much.
His needs are overwhelming.
His care will tear our family apart.
This is not what we signed up for.

And please believe me that I am not making light of this at all. This is truth. This is what happened to us. But somewhere in the 2nd round of “I can’t parent him”, God took a hold of me. And I let Him. He reminded me that He doesn’t make mistakes. He is not surprised or perplexed. God ordained that specific boy to be our son.


“But GOD, did you see how he is acting? Did you see his delays? Did you see how sick he is and how he can’t even sit up? These aren’t “normal delays” God. It is clear there are many many things wrong with him and we…. Ok…. I can’t handle it. I can’t parent him. I can’t.”


And at that moment it was clear to me that I had a very serious decision to make.


I could stand in front of my husband, my guide and the Civil Affairs office and tell everyone how my heart and mind were feeling. How this was impossible. How his needs were far beyond anything we could deal with. And looking at Luke, all of these thoughts and feelings would have been accepted and validated by the guide and the Civil Affairs office. He WAS delayed. He WAS neglected. There were obviously many other things wrong with him. But there was that constant voice of God whispering to me. Whispering how this adoption was not a mistake. How this boy was a part of our family.


And I responded to God: “This is going to be a huge sacrifice for us God. A huge sacrifice for ME God and I don’t know what the heck I am doing! I’m not the person you *think* I am.“ And that’s the moment when He gently reminded me that this whole thing wasn’t about ME. It was about Luke. And most of all...it was about God.

On May 22, 2008 we signed the official paperwork in China to adopt our son Luke.


I firmly believe that the only reason that we came home with Luke was…. our belief in God. Because mentally and emotionally I was so stunned, so angry, so upset that I was not in the game. It is our belief that God doesn’t make mistakes. That He wants to bless us but it’s not about it being EASY or COMFORTABLE. It’s sometimes hard and painful. And this was painful. Lots of painful.


Anyone following Luke’s story on our family blog knows that after 2.5 years of searching for a diagnosis, we finally received it. Luke has an Intellectual Disability. This was our worst case scenario that has become reality. And even in my mind when I rewind to those painful days standing in the Civil Affairs office feeling conflicted, angry, resentful, deceived, hurt and sad…. even knowing what I know now…. I would STILL make the same choice over again.

Was it easy? No.
Was it scary? Yes.
Was I still conflicted in China even after we adopted him? Yes.
Was I sure we made the right decision months later? No.
But we did.
And our God walked us through it. And He is still walking us through it.


All this is just to say that I know how hard it is to come to this crossroads…to have to make the hard decision whether to disrupt an adoption in China. I am just putting our story out there. Our chaos, our experience, our lives… so that if 1 person reads this and then experiences the questions, the confusion and the pain…. maybe that person can feel that they are not alone, that their feelings are validated and most of all that God is there to be the guide.

Making the right choice…

Our first experience with the special needs adoption matching process was in January 2006. 3 months earlier we had completed the adoption of our daughter Kiah from the China Non Special Needs (NSN) program. The path for that program is relatively simple. Apply to agency, complete homestudy and dossier, send dossier to China, get Log-In-Date (LID), receive referral, travel to china 4 – 6 weeks later. We thoroughly believe that God has His hand in the NSN matching process. Kiah is the perfect match for our family.


January 2006 was when God pressed the special needs children of China on my heart. I don’t remember what agency list it was but I stumbled onto their site and saw a chubby little girl with a bi-lateral cleft lip and palate. I hesitantly inquired about her but was told that since we had just come home from China that they would consider us to view her file if she wasn’t matched by March. It was during those next couple of months that I realized how much of a “choice” adoptive parents could have in choosing a SN child…..choices for age, gender and the type of SN.


I kept looking at lists and it was months later in Spring 2006 that I inquired about another child. It was another little girl with a bi-lateral cleft lip and palate. I was instantly smitten. The agency told us this little girl had a family already looking at her file so we were put on a list to view her file if the other family declined her referral. DECLINED. Oh. That was the first moment I realized on a very deep level that there was a specific choice to be made when viewing a file… YES or NO. Up until that point I think I thought that after viewing a file…. people just said YES because that’s what happened in the NSN program.


I immediately felt a little uncomfortable looking at SN lists. It truly felt like a whole child’s life was swinging in the balance. I started panicking… what if WE said NO to a child and no one else came behind us to say YES. Would our NO condemn this child to a life without a family? It seemed like such a heavy decision.


A few short months later we were called with Luke’s referral. Before I even looked at his file or his picture… God impressed upon me that Luke was our son. And I was thankful that the Lord showed up in that moment and we didn’t have to toil over a decision. Little did I know that in the future our special needs matching process would not be as simple.


We brought Luke home in May 2007. 3 months later I felt the Lord calling us to step out for another SN adoption. In my mind I thought finding a child would be easy like it was with Luke. And it wasn’t. We viewed at least 7 little girl’s files at various agencies and each time after reading the file and viewing the picture we felt clearly from God that the child wasn’t our daughter. And we had to say NO. And I would pray fervently that SOMEONE would come behind us and they would find THEIR CHILD in the child we had said NO to.


I was then contacted directly by an agency I had never spoken with before. They said they had lots of kids to place and they were looking for parents. They asked me if I would review a file of a little girl who was 15 months old. The age and gender matched our preferences and we were open to a bunch of special needs so without additional discussion I said yes and they immediately mailed the file to us. 2 days later I received the package. I opened it slowly thinking “This COULD be our daughter so I want to do this slowly and savor the moment!” The first thing I saw was the picture of the little girl. She was naked, laying on her side and she had severe scoliosis. They had placed a pink bow in her hair and she was crying… actually it looked like she was screaming. My heart instantly hurt and the air was sucked out of my lungs. I didn’t know much about this special need. All I did know was that it looked serious and she obviously needed a family quickly. A couple of days later the doctor we consulted told us that she had an estimated 35% curvature of her spine… and she was only 15 months old. It was stated in her file that she needed spinal surgery as the orphanage had watched her curvature worsen. We were overwhelmed and heartbroken. My heart actually hurt for her. And we thought about adoption. I did all the things adoptive families do when seriously considering a child…. I contacted families who had adopted children with scoliosis, I contacted our local doctor, talked to specialists, researched therapies. But at the end of each day, when we prayed about what to do, we continually felt she was not our daughter. But I wanted her to be! I wanted to bring her home, get her surgery, help her recover and watch her flourish in our loving home. But first and foremost, I wanted to be in God’s will. And God was not confirming this adoption. So, we prayed for her, sent her profile back and told the agency “no”. And I cried and I ached.



While we were in the decision making process I had lots of contact with a specific family. They had adopted a child with scoliosis however it was not as serious as this little girl’s. This family shared a lot of information with me and I was very grateful. About 1 week after returning her profile I sent this family an email to say we were not able to commit to her. The family never responded back to me. I thought it was very unusual as they had been so responsive before. I sent another email a couple of weeks later and I was not prepared for the response. This family told me all the things I had internally feared… they said that I had the means, the insurance, the time and the ability to adopt that little girl… and that I purposefully turned my back on her… when she desperately needed a family. That I should be ashamed of myself and that “these children” are more than pieces of paper and pictures. And those words stung. Those words devastated me. The words pierced me and I still cry each time I think about them. And then I was just mad. I was mad because don't all prospective adoptive parents realize what lies in the balance with these kids? That some kids sit on lists for long periods of time. That children with severe special needs and older children sometimes never get matched. But after the hurt and the pain of that email initially subsided…. I focused what I always knew was correct… that relying on God for guidance and confirmation is the only way to proceed into the vast sea that is the matching process of China SN adoption. For us, if we did not have that Heavenly guidance this whole process would be too overwhelming.


It is important for me to focus on the fact that these children… before they are OUR children through adoption… they are God’s children and He holds them in the palm of His hand. And He knows exactly what their future holds.



For us, we slowly and prayerfully consider a child’s file and then petition God for His will…EXPECTING Him to answer. I just couldn’t imagine navigating these waters any other way.



I still think about that little girl. I wonder if she has a family, if she had surgery, if she is now smiling, if she has the warmth and comfort of a home and family. I have found no way to find out these answers. I just have to rely on the fact that God is in the details. The God knows the beginning from the end. And that God has a plan for her life.

Can I handle this????

I can still remember the first special needs checklist we ever filled out. It was March 2005. We had just sent our first dossier to China. Our checklist was quite simple. We stated cleft lip and palate, female and As Young As Possible (AYAP). My husband and I signed it and I quickly faxed it to our agency. It took less than 5 minutes. Looking back on it I am sure the Waiting Child coordinator at our agency laughed her hiney off when she received it! The simplicity of it! Needless to say we were not called for a Special Needs (SN) child referral. Not solely because of the brevity of our checklist, but because our Kiah was in the Non Special Needs (NSN) program. But looking back, what was so important about that checklist for me was that it showed that at that point in time I was just not willing to take a chance, research the options and stretch my thought process. I knew about cleft lip and palate through some earlier research I had done about Smile Train and that was the extent of my interest in exploring other possibilities.


In early Spring 2006 we knew God was calling us to adopt again. Our new agency sent us a SN checklist to fill out. This time it wasn’t really a quick, simple process. The list was 2 pages long and for each special need listed you were supposed to check YES, NO or MAYBE. I poured over that list for weeks. I gave some thought to every special need on the list. I researched and researched. I wanted to be as open as possible while still trying to “protect the climate of our current family environment” as I so aptly put it. Essentially I was trying to figure out what special needs I could check that would give a child a chance at a new life… bless us with another child but…..without the special need being a total…..(gulp) inconvenience. There it is. I said it. This time around we checked YES to about 6 special needs listed on that checklist. Less than 3 weeks later our agency called us with the referral… of our son Luke… and he had a cleft lip and palate. I was so relieved! THAT was the original special need we had wanted way back in 2005! In the back of my mind I thought “whew….we were matched with a child with a special need that is totally manageable.”


We adopted Luke from China in May 2007. And here is where the story changes a bit. Yes, Luke had a cleft lip and palate. And both the lip and palate were already repaired! SCORE! But we soon discovered he had an abundance of other special needs that were undocumented and we were seemingly unprepared for. I felt overwhelmed, deceived, saddened and totally and completely 100% incapable of handling any of it.

And I had to face that question: CAN I HANDLE THIS???


Because truthfully, if you asked me back then to fill out a special needs checklist based on Luke’s issues….there is no way that I would have checked any of them.


Severe Plagiocephaly
Hypoplasia of the Corpus Callosum (brain abnormality)
Growth hormone deficiency
Strabismus and Amblyopia in BOTH eyes
Autistic behaviors
Severe dental issues (caps and extractions!!!)
Global gross developmental delays in cognitive and fine motor
98% Non-verbal
Multiple Processing Disorders


Because straight up…. they weren’t needs I THOUGHT I could handle or WANTED to handle. When I filled out that SN checklist prior to Luke’s adoption I was so afraid of being burdened and trapped by a need I couldn’t handle.


Now here is the truth…even though I thought I couldn’t handle all this…. I’m doing it. Every day. And there are times of struggle (as with anything) but overall… it is a JOY to parent this kid. And even though I didn’t directly choose to be stretched and molded in this fashion…. both Luke and I (and the rest of our family) are thriving, overcoming and we will definitely be better people for this experience.


We all are capable of handling so much more than we think. Imagine what we would have missed out on if Luke was not our son. Imagine what Luke would have missed out on if he had not been adopted. Imagine what I personally would have missed out on learning about MYSELF.


I think this type of knowledge should spur us forward to investigate further, research more and take a chance on a child that may not fit our “mental checklist”. Cause Luke certainly didn’t fit mine! I call my “mental checklist” the one I have that says you want to step out and help but you still want it to be relatively easy and carefree. Is there anything wrong with that? NO WAY. I applaud all families who adopt special needs children. However, how much more could you be offering a child and yourself if you stepped a little out of your comfort zone?


-Nicole
bakerssweets.blogspot.com