Less than a week from now....

we will be adding THIS LITTLE GIRL to our family!!!

HAPPY THANKSGIVING!!!!

There are SO SO many things to be thankful for this year!



My God.
My Children.
My husband.
Our jobs.
Our home.
etc...

And this email.......

I received this email last night. The Subject line reads: Holly will soon be adopted! Holly is the name they call Ava at Philip Hayden Foundation. This email was to announce to all her sponsors that she is being adopted shortly and is no longer in need of sponsor support.




There are many reasons I am thankful for this email. You see, I received this SAME EMAIL in December 2008. Same subject line. Same words inside. However, we weren't the family that was coming to adopt her. It was another family. And my heart was broken.




And so it comes full circle. Almost exactly 1 year later. And WE ARE HER FAMILY. We are the family God chose for her.




And I am thankful for that. I am thankful that WE get to be her parents. That WE get to hold her hand... tuck her into bed.... read her stories... get her the medical treatment she needs.




And I am thankful for YOU all. All the people that rallied around us and made donations or said prayers for this adoption. YOU have been God's hands in feet in bringing this girl home. A community of people making a difference for a child.



So today I wish you all a Happy Thanksgiving!
And a BIG THANK YOU for sharing this journey with us.

You know…..

You know how I have posted about Luke’s brain being all structurally messed up.


You know how I BEGGED Luke’s neurologist at Children’s Hospital in DC for an MRI for 9 MONTHS.


You know how she wouldn’t give it to me because it was flu season or too sunny outside or too close to a holiday or any of the other crappy reasons she gave me to talk me out of that test.


You know how he finally HAD the MRI because his geneticist took pity on my complaining during his yearly Craniofacial appt.


You know how those uber-efficient folks at the Children’s Hospital radiology Department (ha ha) called me the day after his MRI with the saddening results.


You know how I said that his MRI showed that he had Hypoplasia of the Corpus Callosum.


OK.


Now imagine my surprise when Luke’s new and improved super duper smart Developmental Pediatrician from Kennedy Krieger Institute takes Luke’s MRI results and has one of her highly skilled Pediatric Neuroradiologists look at the images for a 2nd opinion … and they find HIS CORPUS CALLOSUM IS ABSOLUTELY NORMAL!


So what does this all mean….


Ready….



I have been told Luke’s brain isn’t STRUCTURALLY messed up.
It’s just REGULAR messed up.



Good. Glad that’s cleared up.

SHOUTING PRAISES!!!

PRAISE THE LORD!!!

2.5 – the number of months that we fundraised for Ava’s adoption.

4 – the number of months I PRAYED before deciding to fundraise for Ava’s adoption.

64 - the number of people who donated to Ava’s fundraiser.

2- the number of reporters I had interviews with.

3 – the number of papers our interviews were printed in.

55 – the number of people I sent fundraising letters to.

64 - the number of times I was in awe of receiving a donation!

7473 – the HUGE NUMBER OF DOLLARS THAT GOD Blessed us with through YOU!!!


GOD IS SO GOOD!!!

YOU ALL stepped up to be His Hands and Feet.

YOU ALL helped carry our cross.

YOU ALL helped a little girl come home to a forever family.

YOU ALL helped to donate $750 to Philip Hayden Foundation!!!



What you all have done is tangible, it is real, it has awed us, it has moved us to tears, it has moved others to take notice, it has made people realize how important caring for orphans is and it has made people see how REAL our GOD is.



God is in the details. He has seen every check that was written, every Paypal payment, every sweet note. Nothing escapes Him. He rejoices when His people come together. And like us, I JUST KNOW He is rejoicing today.

During our fundraising I kept this quote from William Carey in mind:


Expect great things from God. Attempt great things FOR God.


REMEMBER:

God can do all things.

Nothing is too hard for him

All things are possible with Him.


WE THANK ALL OF YOU FROM THE BOTTOM OF OUR HEARTS!


AND WE UNFAILINGLY PRAISE OUR WONDERFUL GOD!!!!



"Lord, I praise You for Your sovereignty over the broad events of my life and over the details. With You, nothing is accidental, nothing is incidental, and no experience is wasted. You hold in Your own power my breath of life and all my destiny. And every trial that You allow to happen is a platform on which You reveal Yourself, showing Your love and power, both to me and to others looking on." – Author Unknown

In the interest of being honest….

Thank you to everyone who left encouraging and supportive comments after my post about Luke’s diagnosis. In the interest of being honest and of fully examining and experiencing this journey with Luke… I wanted to share a little more. A part 2 of the original post if you will...


It's been 2 months since Luke's diagnosis so I have settled a bit. When they said the words Intellectual Disability all I could imagine was a full grown man locked in the mind of a 10 yr old boy. All of my dreams for Luke blew up and all my thoughts and hopes for my “golden years” blew up too. I just imagined Luke never closing his gap and all the things in life he would miss. I had this vision of him being fully dependent on us for his WHOLE LIFE. Meaning full time non-stop care. And that was scary. You WANT your kids to grow up, marry, have kids, hold a job, enjoy life, travel, experience things. And likewise I want to be able to do some Nicole things when I grow old even if that means reading The Time Travelers Wife for the 400th time. (BTW…the movie was MUCH BETTER than the book!!!) It’s my job and my heartfelt choice to dedicate myself to my kids and family but I eventually imagined that I would get to relax just a little. Don’t we all??? After the diagnosis I struggled with thinking that wanting some freedom in my golden years was foolish and selfish.


In thinking back to those initial days and weeks, I was getting WAY WAY ahead of myself. There is absolutely NO WAY to predict...even 10 years from now... how Luke will be when he is 20, 30 or 50. He may be absolutely able to hold a job, live on his own, marry, etc.



After the diagnosis I would burst out crying because I so wished I could meet the "other Luke". The "typical Luke" I expected when we arrived in China. The little boy who would do “typical” things and express himself in “typical” ways. I imagined what he might be like and I ached to know him. That's when God gently told me that there was no "typical Luke". Luke was never intended to be a "typical" boy. That person was someone I created in my head and tried to beg into reality. Luke is Luke. Exactly like he is. It was detrimental to myself to even imagine him in a different way because that is not reality. We will just have to wait and see how God unfolds his story.


In the last couple of months I was faced again with the reality that God’s goal is NOT to have us all be content and comfortable each and every day. God’s goal is to make us into true men and woman of God. And that is hard to understand and harder to live. When I was a young girl I grasped onto Walt Disney’s idea that everything is always supposed to be happy and easy and if anything happens to the contrary then something is wrong. The problem is that believing in that thought process is WRONG. What’s right is that suffering and hardship will come.


And when it does it is important to remember the following:

God’s grace is enough.

God will get you through it.

You will come out of it a better person.


As you can see…. LUKE has made ME a better person. LUKE has brought me closer to God. God has used LUKE to teach me and tend to my heart.

Shortly after Luke’s diagnosis I fell into a “research phase”. That is where I came across the name Gene Stallings. Mr. Stallings is one of the most celebrated football coaches. He served as the head coach of the University of Alabama Crimson Tide, the Texas A&M Aggies and the St. Louis Cardinals. Stallings was also an assistant coach for the Dallas Cowboys for 14 seasons. I don’t follow football at all however all that sounds quite impressive. It is said that in his early career he ate and drank perfection and expected both of those qualities in his players. No exceptions.


And then he had a son.


His 3rd child, John Mark “Johnny” Stallings was born with Down Syndrome. He says that event changed him forever. Seeking perfection was not an option anymore. Mr. Stallings struggled and he ached and he says without reservation that he was dependent on God. Mr. Stallings participated in a very moving interview which can be heard here. Mr. Stalling's story of life with his son is amazing and it gives me great hope for what I can accept and the positive that can come out of this situation.


Mr. Stallings once said "If the Lord took me back and gave me the option of having either Johnny or a normal healthy child, I would choose Johnny every single time."


I can say right now without reservation…..Ditto folks. Ditto.


Lord don’t let me forget in the light, what you've taught me in the dark.

And we ask the question:

How BIG is OUR GOD?

This is a picture of the email I received on 12/2/08 telling us that after searching for Ava's adoption file for over a month... that Ava had been matched with a family several months before and the family had received TA.

This was when I thought the Lord had shut the door on us adopting her.

THIS is a picture of what I will be doing on 12/2/09! I will be leaving the US to fly to China to ADOPT AVA!

UNDENIABLE!!!

OUR GOD IS HUGE!

ALL GLORY TO HIM!!!

D-DAY

I have been putting off making this post for almost 2 months now. We received Luke’s diagnosis on 9/11 and I had composed a majority of this post in the days following his diagnosis. However, the weight of the diagnosis, my fragile emotional state and a need to settle with the reality led me to wait. And I’m glad I did. I have needed this long just to process everything…to think about what it means, how I feel, our road ahead and how truly dependent I am on God.


Friday, 9/11 was a big day for us. Not just in remembering the tragic events of 9/11/01 but it was the day that we had been waiting for. THE DAY that I had been looking towards, imagining, searching for since Luke came home from China 2.5 years ago.



You all may remember my last couple of posts about Luke here, here, here, here and here. In my last post I talked about finding a potential Fetal Alcohol Syndrome (FAS) diagnosis for him. I felt pretty sure about it and all I had to do was find a doctor that was well versed in this syndrome and have Luke evaluated.


After the FAS post I was chatting by email with a friend. She happened to mention that her daughter went to Kennedy Krieger Institute in Baltimore, MD. I had never heard of this place and I immediately googled them. I was thrilled to see that they actually had a whole specialty area of the Institute that dealt with kids with FAS and global developmental disabilities called The Center for Development and Learning. I called the next day to start the process of getting an appt. I really thought this would be much like the regular Children’s Hospital where I call the appt line, give a short explanation of Luke’s issues and then I am granted an appt about 6 months from now “when they have an opening”. That’s not what happened. What I thought would be a simple appt call lasting less than 5 minutes ended up being a “give me all Luke’s history” call which lasted 45 minutes. This is actually a place where the kids must have a compelling NEED for treatment at the Institute. I told them I was interested in having Luke evaluated for FAS. After receiving Luke’s medical information they actually had a MEETING to discuss what specialty area would be most helpful and then immediately granted Luke an appt and we only had to wait 3 WEEKS!


So on Friday, 9/11 we made the 2 hour drive to Baltimore to visit with the Developmental Pediatrician. Let me tell ya… this place is TOP NOTCH! The building was new, the people were caring and nice and the parking was VALIDATED so it was FREE!


We spent 3 full hours at the Kennedy Krieger Institute. The doctor was simply FABULOUS! She didn’t take one tidbit of information for granted. She took a full history in which she asked 2 hours of questions which included looking through his “binder” where I keep all of his medical information and testing results. The last hour was various cognitive tests and a full examination.


Then it was time.


It was nearing the end of the appt and I was bracing myself. The doctor was preparing to give us her findings. She was nervous. I was nervous. I had already told her how long I have searched and how much I wanted to just have “the answer”. And I know she tried to do this gently… even closing her eyes at times searching for the right words. Although at times I have imagined a worst case scenario, I haven’t allowed it to occupy my mind. I have pushed it away and hoped for much better.


Even though I had written a summary on FAS and Luke’s matching characteristics she said an FAS diagnoses wasn’t even on the table. The doctors don’t give a hoot-a-nanny HOW or WHY Luke got this way. And FAS would be just that. They don’t care if it was alcohol, drugs or environmental factors that “assaulted” him in utero. They only care about right here and right now.


So here is where my worst case scenario came to life.


He was diagnosed with an Intellectual Disability.


I was stunned…. did she just really say Intellectual Disability???


I’m not one to get a lot of ear wax so I knew my hearing wasn’t compromised.


Intellectual Disability???

Just kick me in the stomach repeatedly!
And while you are at it …somebody PLEASE peel me off the ceiling!


Intellectual disability is the currently preferred term for the disability historically referred to as mental retardation.

In September, based on her testing, she rated Luke at 21.4 months developmentally. He was 47 months old. When I was figuring his delays I was counting by time…you know… like everything else is measured…..months, years, etc.. I would always say “He is 2 years delayed.” So in figuring that if he kept that rate, he would always be 2 years delayed. No. That's not how it's done. It's counted by percents. So based on his numbers he is currently 50% delayed.


She said worst case scenario is that he will always be 50% delayed. What does this mean? This means at 14 yrs old he would be developmentally 7. And so on.


Excuse me while I throw up.


She said the best case scenario is that within the next 2 years he makes big progress and closes the percent gap some. They believe he will always have delays it just depends on HOW DELAYED he is.


They are doing supplementary genetic testing because the doctor found additional physical abnormalities on Luke. His pectus bone is mal-formed, she noticed his nipples were lower than normal, she noticed large spaces between his first 2 toes on both feet, his ears are mis-shapen, etc. She also wants to have her people look at his MRI. She thinks the former hospital has missed something. She is thinking this is something uncommon and definitely genetic.


I started crying at the end of the appt and said that I just wanted him to be able to hold a job and live on his own when he was an adult. I wanted him to be able to enjoy a “typical” life. I just wanted him to be “OK”.


She handed me a tissue and said “There are many different forms of OK”.


The pit in my stomach that formed during that appointment was not foreign. It’s the same one I had when they handed him to me in the Civil Affairs office in Nanjing.


His current therapies don’t and won’t change. What we were doing pre-diagnosis was what we were supposed to be doing. THANK YOU GOD!


On 9/20 I traveled with Luke down to NC to meet with a Neuro Reorganization therapist. This is a special type of therapist which focuses on rewiring the brain.The brain develops from the base, up. When a child has less-than-optimal beginnings the brain may wire in dysfunctional ways.


The meeting was 3 hours long. A lot was discussed however the most important thing she said… and what I believe was worth every minute of the 12 hour round trip drive that we made in a 24 hr time period …. was that this diagnosis is simply a snapshot of where he is RIGHT NOW. He could make great strides and close his “gap”. Will it ever be fully closed? In her estimation, probably not but I’m not ruling it out. But there is tons of room for improvement and I shouldn’t put this diagnosis in a box because it won’t account for God’s work in this.


It is impossible to experience something like this and NOT have it reflect back on yourself. The human truth is that we are all cowards…. we don’t like to suffer or be in pain. I am no exception. And there have been many painful times in dealing with Luke’s issues. But the Bible states that suffering = refinement. Suffering also means desperation. Desperation presses people towards God.


Our pastor says that God loves desperate people. I was listening to one of our pastor’s podcasts this week and he spoke about the story in Mark 5: 25 – 34. This is the story of the woman who had been sick for a long time. Jesus was making His way through the crowds and she had so much faith that Jesus would heal her that she pushed through the crowds and touched his cloak. The Bible said the streets were very crowded and lots of people had touched Him…. but none with the faith that this woman had. She had BIG FAITH, BIG STUBBORN FAITH. After she touched Jesus, He immediately knew and asked ‘Who touched me”? The woman fell at His feet and told Him the truth. His response “Your faith has healed you”. The Lord knows I am grabbing His cloak! I’m holding on so tight my fingers have no blood flow! I’m grabbing His cloak because I know healing and peace come directly from Him. And I have FAITH He will deliver.

Healing for Luke = whatever God wants it to be.

Healing for me = embracing and accepting this diagnosis, embracing the future and making a difference while doing it.

WHATEVER it is… it’s coming from Him.


And I am on my way… I have actually come a long way from 9/11. This is because God is good.


I am willing to admit that I felt immediate desperation after hearing the words Intellectually Disabled.


I have learned that I have to LOOK at this diagnosis differently.


I have to look at it through the eyes of FAITH. BIG FAITH. BIG STUBBORN FAITH.


This has been modeled in the Bible lots of times.


The Israelites saw the Red Sea and Moses saw God.


Sampson saw Goliath and David saw God.


The people saw Nebuchadnezzar’s fiery furnace but the 3 young Jewish men saw God.


EVERYDAY I will have learn to continually take my eyes off of the word INTELLECTUAL DISABILITY and see GOD.


Because I have FAITH and I am believing God for big things.