The Longer Road

Want to hear a story?  Want to hear a 100% true story that could leave you in tears but praising God at the same time?  Ok, good. Well, then let’s chat.  But before you scroll any further I warn you… go grab a box of tissues.

If you are reading this you are probably know that about four months ago we welcomed our third child to our family. Four months ago we traveled to China and brought home Judah.  The most precious little two year old boy that I never imagined my heart could fall so hard for… but at the same time would lead me down a road with God that would cause me to experience a WIDE range of emotions and truly discover which parts of my life I wasn’t handing over to Him.

Two and Half Months Ago

When your child has nystagmus and low muscle tone you see a neurologist. It’s what you do.  One of my frustrations with doctors and therapists for Judah has been their lack of experience and knowledge with and about international children.  Medically, mentally, physically, and emotionally they are different and for the most part can not be compared to children who were born into a forever family.

So two months ago when we made our first visit to Judah’s neurologist I wasn’t sure what to think of the doctor’s concern for Judah’s small size… particularly his head circumference which wasn’t registering on the growth chart for a two year old.  His doctor was also concerned about his low muscle tone and thought that all of that plus the nystagmus could be the result of some brain damage.

I’m not sure if you’ve ever had those words said to you about your child but for me it just about sent my body into complete shock.  I mean, could my child not be small because he was malnourished?  Could he not have hypotonia (low muscle tone) because he had possibly spent two years in a crib?  Could his head not be small because the back of his skull is flat from so much time spent laid on his back?

Well yes. The doctor felt any of these could be the reason or an underlying factor but because he honestly had no clue he felt we should have an MRI done on Judah’s brain.  Judah’s head was measuring at 44 cm… 1 cm shy of being on the growth chart.  He shared with me that he would not be as concerned if Judah’s head was 1 cm bigger.

The MRI was scheduled for a month and a half later… because umm “hello” every mom is perfectly cool waiting that long to find out what is going on inside their child’s head.  With not much else to do besides wait I decided to spend that month and a half praying for Judah’s head circumference to increase by 1 cm. In my mind I had a month and half to get Judah’s brain looking as good as possible for that MRI.

I did research on foods that helped to promote brain development and immediately began feeding my baby eggs, nut butters, and fattening Greek yogurt.  I don’t mean that low fat Greek yogurt stuff I mean the 300 calorie, 14 grams of fat per cup yogurt!  It was time to get Judah loads of healthy fats.  I also added a liquid DHA and liquid multi-vitamin to his diet. On top of that I began praying for him.  That God would increase his head circumference to 45 cm by the morning of his MRI.  I would not measure in the meantime but fully trust God that no matter the outcome it would all be for his glory.  I prayed and prayed and really had to do a lot of self checking to make sure I truly did believe that God was bigger and greater than whatever Judah had going on.  Through our month of half of waiting God really drew me closer to Him and prepared me for everything that was about to happen.

One Month Ago

June 29 was the day his MRI was scheduled for.  The girls went to the grandparent’s house and we had a night out with Judah before his big day.  While he was sipping his “clear liquids” (apple juice) that morning I nervously pulled out my tape measure to check his head circumference.  It had been hard waiting all that time but I didn’t want to falter in my trust of God. I even almost caved in and measured the night before but I knew that God could still be at work growing that little head and I was going to wait until June 29.

I remember circling the purple tape measure around his precious little head hesitating a moment because of my own nervousness to see what the result was. Y’all! I kid you not his head circumference grew an entire centimeter in a month and a half!  God had answered my prayers and calmed my heart on the morning of such an important day.  To me it was His way of telling me everything was going to be ok.  I was ecstatic and felt ready to handle whatever information the MRI gave us.  Just so you can see what a huge deal this is and how awesome our God is take a look at the growth of the average child’s head per month/year.

The day continued on. We went to the hospital. I finally convinced the nurses it was a TERRIBLE idea to stick my son with an IV and then attempt to put him o sleep.  Finally, they felt like my idea to knock my terrified and traumatized son out with gas might work best.  In the end, we left the hospital shortly after lunch and all went home to wait on the result that we were told we would receive the next day.

Two Weeks Ago

The next day came and went and so did 14 days after that and still no word on the results of the MRI.  Michael Luke called for the third time and a little while later the neurologist called us to talk about the MRI.  Michael Luke had just pulled into the carport and was able to put the phone on speaker so that I could hear as well.

You would think that in all the learning that doctors do that somewhere there would be a course, one day seminar, or five minute closing lecture on delivering bad news prep… but I’ve yet to see the results of that.  About five seconds into our phone call the doctor told us that it was just as he suspected… Judah had brain damage.  He went on to name the parts of the brain that showed damage but I didn’t really hear because a) I don’t speak medical terminology and b) my auditory hearing kind of shut everything off after the words “brain damage”.  I mean wouldn’t yours?  He wouldn’t tell us the extent of the damage because like every good doc we needed to come in for a follow up appointment for that pertinent information.

The phone call ended and Michael Luke seemed almost excited about the news.  You know why?  It’s just amazing the way our God plans things.  That entire day Michael Luke had been in a CEU course about neuroplasticity of the brain in children!  All day he had heard story after story of children similar to Judah overcoming their setbacks and challenges and taking the world by surprise through therapy.

So how does it work in lay man’s terms.  Basically you find out the part of the brain that is damaged and you teach the part of the brain closest to it to do the job of the damaged part. It’s like calling in the replacements.  Yeah, it takes a lot of work and means that the road to reaching milestones is longer than the average child but also that our expectations for him should not be cut short.

Amidst my shock I was also encouraged.  I was encouraged because I am well aware that it could be far worse.  I was encouraged because God given me hope when he increased the size of my baby’s head circumference.  I was encouraged because leading up to this news God had placed key people in my life who had children who had overcome brain damage and are thriving in life now.  People who have walked this road before me but are well aware of what it feels like when you are still in the trenches.

In a way our future began to look different. It wasn’t exactly the path I would have voluntarily chosen but every step of the way I have know God is in control and lead us directly to Judah.  Nothing changed about Judah that day.  He’s still the same adorable boy that we met back in March.  He’s the little boy that I never knew my heart longed for. I don’t feel like the orphanage gave us misleading information.  I don’t regret following God and choosing him.  He’s mine and I love him and will do everything I can to care for him, advocate for him, and help him develop to his fullest potential.  He didn’t ask for this to happen to him but he is made in the image of God and I absolutely love him.

I put him to bed that night whispering the same thing in his ear that I do every day, “We’re going to be ok buddy.”

One Week Ago

A week ago we traveled to Nashville three hours there and back for a spur of the moment very important physical therapy appointment with the lady who had  taught ML’s course on neuroplasticity in children.  After witnessing the way that she immediately calmed down Judah who lives in a state of almost constant panic as a result of trauma I decided to refer to her as the Cesar Millan of babies.

Turns out that to help Judah overcome all his hypotonia we need to work to wake his body up. This pretty much involves being rough (in a sense) with him.  Quite possibly because so much of his life was spent in a crib his brain doesn’t process and feel a lot of the basic touches to his skin.  He needs deep pressure applied to him and for us to rub him roughly all over.  If you see us out and about you may even notice that we have begun to squeeze and massage his hands and legs and to pound on his back.  He enjoys the feeling of that and it helps to calm him down when he is around peopel. Overtime it will help to “wake” his body up and help him respond to softer touches and also help him control and have more use of his limbs.  I felt so empowered leaving that appointment knowing that we were in the beginning stages of remapping and rewiring Judah’s brain.

Two Days Ago

Despite my motivation to help Judah overcome all the obstacles that lay before him I DID NOT want to know the results of his MRI.  Mainly because I didn’t want to hear any negative comments the doctor might say or his predictions for the future using only the medical knowledge he had without the understanding of the power of therapy and prayer.  Michael Luke and I had even discussed that I would not go to the next neurology appointment.  He would go to find out the extent of the damage and I would continue on championing Judah working with him to reach life to the fullest.

After an incredibly terrible experience with our pediatrician the first week home from China we decided to find a new doctor who like us believes in holistic care, a healthy diet, natural solutions to life’s problems, and had experience with internationally adopted children.  Enter Dr. Blake Bergeon.  Not once did he utter a negative comment about my child.  He didn’t ask to see the milestone questionnaire that Judah failed 100%.  He took Judah for who he was and mapped out the action plan from there. There is so much to share about our visit but I’ll stick to the highlights.

First off he wants to double up on Judah’s speech therapy so that he can learn to communicate with us and hopefully eliminate some of his frustrations.  Next, he shared with me that Judah has grown FIVE inches in four months, gained three pounds, and added another half a centimeter to his head circumference! My heart was overflowing.  But on top of all that I mentioned the MRI to him just to make sure he knew about it and he mentioned that he had looked over the report but wasn’t too concerned about it because there wasn’t any mass areas of brain loss or damage… just some white matter damage in several spots around the brain that probably happened from a lack of oxygen during the birthing process.  He shared all this information before I even got a chance to tel him that I didn’t want to know.

You know what though? I’m glad I found out. I’m glad because I don’t have to live in the fear of the unknown. I’m glad because the doctor shared with me stories of success that other international adoptive children have had that have also had white matter brain damage.  I’m glad because after everything my fear has dreamed up white matter damage seems small.

I walked out of that appointment on cloud nine. Monday I might have possibly been the only person on this planet praising God for white matter brain damage. Judah has a long road ahead of him but one thing I know is is that that road looks pretty promising.

Next Tuesday my little boy will turn two and half and still will not be crawling, talking, or fully feeding himself but I happen to think he is pretty smart because he’s making progress every day. He’s also brave.  I can’t even begin to imagine everything he has been through. From being abandoned, to living in an orphanage with limited interaction, to having your world ripped out from under you with out any warning…. no wonder life and people are terrifying to him.  But he’s overcoming all odds. He survived and fought for his life the first two years and now his is learning to grow and thrive.  He’s a fighter and so am I and with the help of God I know the sky is the limit for my little one whose name means “His Praise”.

I’m well aware that this journey won’t be easy or short. Some days will be completely frustrating but isn’t life like that with kids. But in the end I know I will look back and clearly be able to see the hand of God at work within our lives and I will give Him all the praise that is due him.

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A Little About Judah

We’ve been home from china for six almost twelve weeks now. (I started this post at six weeks home but couldn’t bring myself to finish putting my thoughts down until now.) I honestly didn’t expect to go this long before writing another post but up until now I really haven’t had the opportunity to sit down and gather my thoughts and write… ok maybe I have but I’ve been indulging in my favorite pastime… reading.   Let’s just call it maternity leave, lol!

In addition to adjusting to life as a family of five over the past twelve weeks we also moved into our house… seven days after being back in country!  It was crazy and looking back I’m not sure how we did it but it was better than letting Judah adjust to our apartment and then uprooting him and moving into a house a month or two after returning home.

As much as I know you would all love to see pics of Whistle Haven I know you would much rather hear about Judah.  Besides at this point the house isn’t exactly ready for pics.  We still have construction workers coming by on a regular basis and moving boxes scattered all around.  It’s beginning to look like we live there though and it certainly feels like home now.

So Let’s Talk About Judah

Noah for females in Hebrew means “motion”, Esther means “star”, and

Judah means “to praise”.

Both girls have certainly lived up to the meaning of their names and I don’t expect Judah to be any different.  My heart and prayer is for Judah’s life to bring praise to God but I’ve realized over the past twelve weeks that to truly do that I must share where he’s coming from. So that as he overcomes hurdles and learns to work around barriers you will see the need to praise God for all the work that he is doing in and through Judah’s life.  I will be the first to tell you that God has taught me so much already through Judah.  Adoption is by far one of the toughest things (both times) that I have ever done in my life but also (both times) one of the ways that as I look back at my faith I can see the biggest growth and the times when I have clung to the scriptures and the love of God most.

Adoption is tough.  As hard as it is for the parents it in no way compares to how difficult it is for the child.  In Judah’s case it has been pure terror and it completely traumatized him for the first eight weeks at home.  Suddenly everything he knew was ripped out from underneath him and he had no idea why.  The only thing that soothed him was Michael Luke and me holding him WHILE walking. If we stopped even for a minute it was more than he could bear. He would almost immediately start biting his thumb and crying.  I don’t mean sucking his thumb like some babies do I mean physically biting. Biting to the point that his thumb was calloused from biting it so much.  In China his nanny told me that he bit his thumb to tell people he was hungry.  I haven’t seen him do that since coming home because I don’t let that sweet boy go hungry but he does bite it when he becomes uncomfortable or is trying to go to sleep.  I can happily share that he doesn’t bite his thumb as much now.  About four weeks ago he started tolerating me holding him while standing still and he doesn’t bite his thumb near as much when trying to go to sleep.  In fact sometimes he just accepts that it is bed time and rolls over and goes to sleep. I am thankful that during this exhausting and tough time of Judah adjusting he doesn’t tolerate his stroller and car seat. So let’s just say we may or may not have driven lots of miles out of our way just to remain in the car and we may or may not have wandered aimlessly around the malls and parks just to fill our time.  It worked though and we are seeing light on the other end of the tunnel now.

Nowadays, Judah still likes to be held a lot but he does tolerate playtime a few times throughout the day and is starting to really enjoy watching his sisters play. He also loves music.  So the girls and I love to crank up some Disney songs and dance around the room while he sits flailing his arms and head around joining in the fun with us.

 

A couple of weeks ago Judah got some adorable glasses that I think took his cuteness factor to an entirely new level.  Apparently he’s pretty nearsighted so this helps to improve his vision.  We aren’t sure how clear he sees though because on top of being nearsighted he also has nystagmus.  Basically it means that his eyes are constantly moving back and forth making it hard for him to focus or see things clearly.  Remember when you were a kid and you used to spin around in circles and then you stopped but everything looked like it kept spinning?  Well, that’s similar to how Judah views the world… without the dizziness.  It will be a while before we actually know how good his vision is but I think he sees pretty good. He’s able to distinguish foods on his plate and will track us around the room.

Nystagmus was one of the special needs listed when we reviewed his file last year.  Michael Luke and I had been praying about Judah, at the time his name was Renquan (pronounced ren-cwhin) for several days.  I was nervous about adopting a child with low vision who might possible be legally blind.  For several days I had been praying to God, asking him for wisdom and to make it clear whether Judah was the child for us.  One of my concerns was how would a vision impaired person get around independently. Well, I kid you not, the very day I asked God to make it clear to me he did!  We were in Salt Lake City at the time riding the trolley around downtown and at one of the stops SIX blind people got on.  The first waited at the door and used his cane to count each person as they boarded.  He clicked his cane after the sixth one boarded and said, “ok, that’s everyone.” It was literally the blind leading the blind and God’s way of showing me that everything would be oik.  I knew then that Judah was the child God intended for us.  Now that we are home Judah’s low vision seems like such a minor thing.

This past week were finally able to begin our therapy sessions. So far we have started occupational and developmental therapy with physical and speech therapy beginning soon.  Judah’s therapy doesn’t have as much  to with the fact that he has low vision but that he also has hypotonia or as it’s more commonly referred to as low muscle tone.  Think floppy baby.   In short his brain has not fully learned how to activate and use all of his muscles to the best of their ability.  This leaves him developmentally and cognitively behind but according to others who have been down this whole therapy route therapy can do wonders for children like him.  So let’s just say I’m one ecstatic mama because carrying around 22lbs of baby all day is a workout!

Regardless of Judah’s special needs he is made in the image of God and he is fearfully and wonderfully made.  And I’ve fallen completely in love with the little boy that makes the sweetest sound as he pats me on the back, squeezes my neck, and then gives me slobbery kisses.  In this broken world he’s discovering love.

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Lianyungang Social Welfare Center

Nanjing, China is where we met Judah but he is actually from Lianyungang, China.

Visiting your child’s orphanage is sort of an elective with a China adoption.  To truly understand where Judah came from and what kind of life he had up until he met us we knew we wanted to visit his orphanage.

Wednesday morning our guide and driver met us at the Nanjing Holiday Inn hotel for a four hour journey to Lianyunguang.  As Americans I think we hear a lot about the vast population of China and we picture the major cities of Beijing and Shanghai.  Nanjing and Lianyunguang both fit those descriptions well but the four drive between the two cities was mostly farm land.

 

The drive was beautiful.  Field after field that grows wheat in the winter and harvests rice in the summer.  Stand alone houses and small rivers and water channels used for transporting goods. Men and women working on the farms with the occasional tractor or plow.It amazed me that even in a country as populated as China there is still so much green land.  It was beautiful!

We arrived at the Lianyungang Social Welfare Center a little before lunch. It wasn’t just a building it was a complex of buildings that served as an orphanage and a nursing home.  Judah’s nanny and the orphanage director greeted us at the front entrance.

 

With international adoption there is so much unknown about how your child has been cared.  The Lianyungang Social Welfare Center is housed in a new set of buildings that is only a couple of years old.  The facility was clean and colorful designs were used throughout but even this can not hide the fact or feeling that where he had lived was an institution.

 

We were shown the playroom where Judah spent time each day with some of the other children and a small room where he slept when he was a baby before being moved upstairs to his foster family.

 

Judah’s foster family lived above the orphanage. There are several families living there in the complex.  Each family is allowed to live there rent free in exchange for caring for some of the children at night.  For instance Judah’s foster family cared for four children at night and during the day the kids joined the rest of the children downstairs. We took the elevator to his foster families living quarters.

 

We were welcomed by his foster mom and dad who had prepared a big lunch for us.  She was excited to see Judah again and I was thankful to meet the woman who had cared for our little guy for us.  We didn’t know he had been living with a foster family until we met him on Monday.  Pictures of the kids were taped to the wall in the living room and there was a small table where the children normally sit.

Sitting on the table was all the food she had prepared for us.  We sat down for a short meal. The foster mom joined us and fed Judah while everyone else crowded around and took pictures for us.  Everything happened so fast that really it was hard to take it all in.  The man brought us canned drinks and I eagerly took one because I was so thirsty.  I popped the tab and pulled it back thinking it was going to taste like an R.C. Cola or something. Boy was I shocked when I realized it was some sort of Chinese beer!  I felt bad that I had opened one of his three remaining cans only to drink a sip.

After our meal our guide took us down the hall to show us Judah’s room that he shared with the other three kids.

The sight of his metal sterile looking crib just about broke my heart. It was so tiny but at least furnished with colorful Paul Frank sheets and blankets to keep him warm.  Here was where my little boy had slept every night.  The entire living unit consisted of five rooms.  This is what home had looked like for him up until now.

After visiting with his foster family we went back downstairs for a delicious meal that the orphanage had prepared for us.

it was prepared by the cooks there.  Our guide shared with me that this was some of the same food Judah was used to eating.  He didn’t eat  much but the girls made up for his lack of appetite.

The table was set with beautiful china trimmed in gold but the fanciest thing to the girls was that they got to drink Coke out of long stemmed glasses.  Judge me if you want but they had never had Coke before so this was an extremely fancy occasion for them!

I am incredibly thankful that Judah had the opportunity to live with his foster family but the truth is that even with that little luxury the effects of institutionalization have not escaped him.

Judah is two but developmentally around six months old.  I’m not all that sure how much interaction with toys and people he has had and I don’t know if he has ever learned to love someone else because he showed zero emotion leaving his nanny and foster mom.

What I do know that is in six short days I have already seen this little boy grow in big ways.  Monday he had no desire to reach out and touch things.  I’m not sure it was nerves or what but he was basically lifeless. Now we board the elevator and he’s learned that when he reaches his hand out he can feel the scratchy upholstery on the wall.  He’s beginning to show signs of wanting to be held and starting to hold onto me as I hold him.  He still doesn’t understand peek-a-boo or get tickled easily but he is starting to grin at me when I lean over him and talk to him on the floor. He hasn’t learned to crawl yet because maybe he’s never had a motivation to  but last night he rolled all over our room because he was so happy and wanted to see what was going on.

In one short week this little boy is finding joy in life and letting his curiosity for life propel him forward.  Love is powerful.  Love is free and life changing.  So mom next time your just sitting there holding your crying baby or laying on the floor with your little one feeling like you are wasting precious time remember that you aren’t.  You are helping your little one develop and become all that they can.

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