The Story of Us: Landen's FX Diagnosis

Me with Landen, much younger (both of us!)

Quite often I am asked to tell the story of how we came to find out that our sweet Landen had Fragile X Syndrome.  I thought it might be good to record my memories of the whole experience here.  It is a story of searching, loss, heartache, community, hope, and prayer.  At times I wish I had a different tale to share, but this one is ours, and I believe it is a beautiful one because God's love has masterfully knitted our hearts together, never letting us fall past the grip of His grace and hope.  

Landen was born on January 18, 1999.. 6 days overdue and 8 lbs 9 oz....He was perfect with a great color and a healthy set of lungs.  =)

I remember waking up the next morning in the hospital to Mark gently explaining to me that the doctor had pointed out that Landen had 3 distinct abnormalities...all of which were fairly common and "nothing to worry about".  One was a heart murmur..they believed this was benign and would disappear in a few days, (and it did).  We were instructed to have him checked again soon and then follow up in 6 months with a cardiologist.  The next one was "pectus excavatum"..a congenital defect that causes the sternum to be indented.  We were told this was not cause for alarm and might just be something that concerns him cosmetically as he grows.  The last one was a hypospadius of the tee tee area..you'll have to look that one up : ) But it was of no real concern either and could be fixed as an infant.  

I remember taking a deep breath and trying my best to rely on the information that all of those issues were commonplace.  How strange though, I thought, to have 3 separate abnormalities at the same time...it was quite the coincidence that placed a sliver of quiet concern in my heart.

As the months of Landen's infancy drew on, all was peaceful and developing as expected.  Just like Bethany, he was a great baby who ate and slept well, followed a nice schedule and was easy going and happy.  

Baby Landen with Bethany, aged 5

When he was about 6-9 months I noticed that in attempting to sit up he was able, but it was sort of hunched over, as if he were a little lazy.  I also noticed that when I held him on my hip that he didn't grab on very tight with his legs.  This really stood out to me when I began to babysit occasionally for another little girl who was about the same age.  I also began to notice a particular spark in her eye that I couldn't always place in my conscious mind...it was just a mother's intuition that began to grow within me that there was a subtle difference between she and Landen.  I noticed a greater level of inquisition about people and objects and activity than I seemed to witness in my son. At that time I usually took on an introspective judgement upon myself and my own parenting...I must "not be doing something right"...I was constantly feeling a growing need to make sure he was surrounded by color, books, toys, and interaction.  An undercurrent of anxiety was growing in my mind, and a concerning sense of watching and waiting for milestones to come.  

Once he hit the 12-13 months mark, he was walking but only if he was holding our hand and sort of on his tip toes mainly.  As soon as we would let go he would stand a second, then collapse into a seating position with what again looked as if he were merely too tired and disinterested to keep going with it.  The doctor assured us that he was "just being a boy" and a "typical late-bloomer".  That wasn't setting well with me..I decided to get a couple of other names of doctors and let them take a look at Landen over the next few months.  They all agreed he was probably fine, that some boys do take until 18 months to start walking.  One doctor;  however, admitted she felt I should go to another route of discovery.  So we set an appointment for diagnosticians from the school district to come pay a home visit and do an evaluation on Landen.  "If there's nothing wrong, then at least your fears will be alleviated" she said.  Something in my gut began to really grow and manifest an anxiety that day.  I was scared.  

The backdrop of our life at that time was happy and very fulfilling.  Mark was the youth pastor of our church.  We had just built our first home and absolutely loved having youth over.  Looking back I know that sharing our life with teenagers at that time helped us to focus outside of ourselves and give us an outlet amidst the question marks about Landen's development. We were thankful for how sweetly the kids all loved on both Bethany and Landen.  We had a faithful community of friends and support.  In our usual weekly routine we attended the Wednesday night prayer service.  For weeks we asked for prayer for Landen to begin walking, and that if any medical issues were causing his delays that he would be healed.   I'll never forget how beautifully we were embraced by our church community.  Their  faith-filled prayers and love they offered warmed our hearts and calmed our minds.  We knew we were not alone.

The day before the school district reps were due to come to our home, at 17 months of age,  Landen began walking.  We were elated, grateful, relieved.  Our  friends rejoiced with us at church that night.  We all went home with hearts full of hope.  I took a deep breath and prepared myself to go through the motions of the tests the next day, anticipating the opportunity for Landen to prove he was out of the woods.  

Two ladies came to our house the next morning.  They played and interacted with Landen, taking notes and marking answers on their test forms.  They convened at the dining table for a time, speaking softly to each other and comparing notes.  I watched from a distance from the living room, playing with Landen.  They called us over to the table to discuss their findings.   I felt like I was moving in slow motion...the walk I had taken a million times from the living room to the dining table felt so long.  They told us, in an aloof, matter -of- fact manner,  "He definitely has a global delay of at least six months, which means that something significant and underlying is probably causing these issues, and that also means he qualifies for our services for therapy."  We were dumbfounded.  My heart sank in a way that I had never experienced in my life.  Looking back I don't know why were naive enough to not understand that his delays would likely have a medical cause.  All I know is, it is one of the hardest things to process the possibility that your sweet and beautiful child may not have the capabilities to fulfill all of the hopes and dreams that were ushered into your world when they arrived.  We begged God to heal our son.  I taped Isaiah 43 to the dash of my car that says “when you walk through the fire you will not be burned, when you go through the floodwaters you will not drown.”

Despite the advice of the therapists that day to not bother investigating any genetic or medical cause for Landen's delay..it "wouldn't change it" they said...I knew better.  I knew we needed an official diagnosis in case of any other accompanying medical complications that we needed to be prepared for. So the long journey of visits with multiple doctors and specialists began... we hit the Meyer Center at TCH, a renowned neurologist, and a geneticist.  These visits proved to be emotional roller coasters.  The neurologist was first convinced that he was fine...Landen was a sweet charmer and interacted really well with the doctor.  He sent us home advising us to see the geneticist to "rule out" any issues, but that he felt Landen had been a late bloomer and nothing more.  We left feeling cautiously optimistic...until the next morning when that same dr called me back.  He said the more he thought through Landen's case after we left, that he felt in his gut that we should check into something called William's Syndrome.  All he had to do was mention that name once and I immediately began a furious internet search to learn all I could about the condition...comparing pictures of afflicted kids with those of Landen, basically trying to diagnose him myself.  

Our next step was to see the geneticist at TCH.  He advised us to begin with a blood panel that would test for introductory genetic markers of some of the most common syndromes and issues.  If anything indicated a "red flag" they would do further testing in that particular area.  After a couple of weeks I got the news over the phone that a genetic marker had appeared.  Not for William's Syndrome, but for Fragile X Syndrome.  It was not definitive and would need further specific testing.  The geneticist strongly felt that Landen did not fit the description for FX, but reminded me that anything was possible.  The other piece they discovered was an elevated reading in his urine that could indicate an extremely serious mitochondrial dna problem that could lead to a complete deterioration of health over several years.  But because further detection would involve more invasive measures, the doctor recommended we first rule out FX.  

That started one of the darkest times in our life. At times Mark and I could barely communicate. We both sort of slipped into our own coping habits- me on the internet searching for hours for clues, Mark retreating into work. We were essentially drowning in our own separate seas of grief. “This was the kind of thing that happens to other people” we thought. 

We realized that we were at a crossroads in our faith. Could we trust that God would heal Landen, no matter what the diagnosis would say, and if not, would we continue to follow the Lord wholeheartedly, trusting in His goodness and purpose for our life? 

As Mark and I began to pray together for Landen, God began to unite our hearts with the same hope. We knew we wanted to see God’s power in our life. We thought- we could have seemingly perfect children, house, cars- blessings wrapped in all the typical packages we think we need to be happy, and yet all the while miss out on a touch of only what God can bring to life, and in the way He wants to bring it. So Mark and I decided to lay our son  at His feet, and trust that even in suffering, He would grant us that peace we so desperately craved. 

In those days I found the comfort I needed in the Psalms. God was my rock, my hiding place. I was so desperate at times that I carried my prayer journal around with me in the car so that I could stop and cry out to God when waves of fear would engulf me. 

After a very long six weeks that spanned the Christmas holidays, that dreaded call from the doctor came on January 16, 2001, 2 days before Landen's second birthday.  I was home alone with the kids and went into my bedroom, barely able to breathe as I listened.  He said he was surprised by the results, but that Landen did indeed have Fragile X Syndrome.  I had unknowingly been the carrier of a faulty gene passed down on my X chromosome that affected my son’s DNA. The effect on children ranges from learning disabilities to moderate retardation.

I hung up the phone crying, then trying to collect myself so as to figure out how I was going to break the news to Mark.  He was due home from work soon.  Mark came home and as we stood in the kitchen I told him I had finally gotten the call.  After we had stood there for a while talking, I heard little Landen calling to me from his room.  He had woken up from a late nap.  I vividly remember turning the corner from the kitchen into the hallway, and again the walk to his bedroom door felt so long, almost in slow motion.  A million thoughts flooded my mind within a couple of seconds.."I'm about to look at my child knowing he's different...is he gonna seem different to me?  He's the same sweet boy he was before I had ever heard the term Fragile X...don't let this scare you...you already know him.." As I opened his door, he was standing in his crib, smiling at me, lifting up his arms for me to hold him.  I was filled with more love and compassion than I had even felt before.

We had to, in many ways, bury the dream of the son we thought we would have. We had to lose all normal expectations. We began what has now been 12 years of doctor visits, medication, and therapy. Despite the hardship, Landen has been a delightful child as he has grown, and has been dearly loved by those around him, especially his big sister Bethany. His disposition is magnetic and endearing. He loves cars, airplanes, riding his bike, watching movies, going to car washes.

Of course there have been many difficult paths on this journey.  Much of those have been described in other posts on this blog.  And as for answering that haunting question..."could we trust in God's goodness and purpose for our life?"  The Lord has given us the ability to say yes.  But it is a decision we must make every day, sometimes moment by moment.  Overall, we couldn't be more grateful for our precious boy.  He has a contagious smile and reminds us every day how important it is to take in each moment of life, reconciling broken dreams with the undeniable joy we experience because of who he is.

To learn more about Fragile X Syndrome, visit www.fragilex.org

To Run With Endurance-Celebrating National Fragile X Syndrome Awareness Day 2013

"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. 2 We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith.[a] Because of the joy[b] awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne." - Hebrews 12:1-2 

It's that time of year again...when those of us families affected by Fragile X Syndrome, along with our friends and professionals in the medical field who are passionate about helping these special kids mark a special date on the calendar.  On July 22 each year we strive to bring awareness about this condition to the world.  We share facts and figures, symptoms and stories, longing to shine a spotlight on these sweet kids so that our own "crowd of witnesses" will continue to grow in support. 

This year the National Fragile X Foundation www.nfxf.org put out a challenge to participate in a fundraiser, a "Let 'Em Know Virtual 5K Event".  When I heard about this, it was a no brainer for us because Landen had just begun riding a three wheeled bike and I had begun struggling running behind him, lol.  So we began officially logging time.  Then my mom started joining us and together we have logged over 90 miles!  I set a goal for $500..so far we have $300...I am thankful beyond words for each thoughtful dollar donated for #teamwilson!!!  If you would still like to give before the end of day July 22, click this link  http://www.crowdrise.com/teamwilson/fundraiser/jessicawilson3  to donate =)

To give you some idea of what it's like to exercise with Landen, he is just about the best trainer you can find.

#1. He is very commanding and will repeat what he wants you to do over and over (so you'll comply just to make him stop, ha!) 

#2. He's very fast on the bike and if you don't want to lose him you have no choice but to keep up! 

When we first go outside he tells me "stretch mom!" while he rides in circles on the cul-de-sac waiting for me to finish. Then he takes off on the bike ahead of me, yelling "start running mom!"  Before I know it he is looking behind at me shouting "faster mom, faster!"  Once we get going, he has learned to stop at the intersections (i'm also reminding him through labored breaths from behind)..and he loves to wave at cars going through the stop signs.  (He's so sweet to people it just melts my heart).  It's sort of entertaining to watch peoples' various reactions to him.  Some are cordial and give a sweet smile, a few have rolled their window down and said "we knew him when he was at Metzler"..etc (Landen has a way of becoming infamous lol), and yet others will look at us like we are crazy.  It's funny if mom is with us because her mama bear feelings come out and she gets offended by those who are stoic or ignore Landen when he's waving to them, haha! 

One day Landen was begging me to go all day and finally at 2:30 pm I had to give in.  However, it was 93 degrees outside.   Needless to say, when we came back to the house, I was dripping in sweat and about to lose a lung, and he looked over at me and so enthusiastically said, "whew! that was GREAT!"  ..difference of opinion!  =)  

But of course, I am so grateful for my little trainer.  It has been fun working on a goal together, even if he doesn't understand how it all benefits a Fragile X campaign.  Looking back at Hebrews 12:1-2 I am aware that our "race" is but a small one amid the bigger track we are on in this unique life that God has called us to.  It is a daily, moment by moment choice for me to submit myself to a greater purpose of knowing Christ and making Him known.  Many things compete for my attention, affections, and mind.  There are particular things in my life that God has been challenging me to be released from so that I am not weighted down and therefore limited in my view of the finish line.  What is my finish line?  It may not be a cure for Fragile X in my lifetime, it may not be a life filled with grandkids and college graduations.  But because of those that have gone before me, blazing the trail of faith and hope, I have landmarks of truth to cling to along the way:

God will never leave or forsake us.  His mysterious love is echoed in my special boy's heart.  God specializes in redeeming lost dreams and turning them into something that can touch others' lives in bigger ways than we could living only for ourselves.    As long as I keep my focus on the Lord, "the champion who initiates and perfects our faith", I can endure.  I love Hebrews 12:12-13 as well...

"So take a new grip with your tired hands and strengthen your weak knees.  Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong." 

weak knees...

 All I have to do to remind myself that I am not alone in this journey is to read the fb posts of other FX moms who communicate in FX forums.  Sometimes they speak of elation over small victories.."my 5 year old went on the potty for the first time today!" or "i am so proud of jason...we went into the grocery store and he made it without any meltdowns!"...other times it is gut wrenching honesty over their grief...."i'm sinking...my sister in law told me she's pregnant.  I want to be happy for her but I am so deeply sad that I can't have any more children..I broke down in the middle of Kroger..is this normal?"  Then the flood of support and encouragement begin to flow as moms hold each other up.  It is one place we can go where we know without a doubt we will be understood.  Because, the truth about having a child with this condition is, though we may go through phases of success, less meltdowns, find medications that help..it is still hard.  Just when I think I'm coasting along, maybe even thriving, I can be hit with a sadness that creeps up on me.  This happened recently when I was attending an outdoor concert at Market Street with my dear friend Kathie.  As the evening drew on, more and more families gathered on the lawn.  Kids of all ages were running around, playing, dancing.  I enjoy watching little kids.  I am marveled by their little minds that work like sponges, taking in all that is around them and responding to it appropriately.  After a while Kathie looked over at me and said, "are you ok?"  I said, "yes..why?"  "You just look like you are in very deep thought."  It took me a while to realize that a sense of sorrow was enveloping me.  Often, by the time I can name what I'm feeling, my heart is literally aching.  I am grateful beyond words for my friend Kathie who is never impatient or aloof with me in these times.  She lifts me up and always prays for God's truth to rescue my heart. 

So..this is the life of Fragile X Syndrome..   sorrow.   sweetness.   despair.  elation.   regression.   growth.   fear.   hope.  loneliness.   community.        

Landen riding with his Nana's dog "Jonnie Cash" in the back =)

http://www.crowdrise.com/teamwilson/fundraiser/jessicawilson3

changes

I must start by saying I began the draft of this post a few months ago and just discovered that I had not finished it...but it was time for an update, so here it is...

I recently discovered a book written by the father of an adopted child with a severe disability.  It is called Wrestling with an Angel by Greg Lucas.  It was  surreal for me to open up the pages and read the intimate thoughts, fears, struggles and hopes of another parent as he faced the daunting daily tasks of caring for his son.  Although his child does not have the same condition as Landen, there were many similarities.  The father was brutally honest and descriptive about the hardships and complexities of having a disabled son.  It was fascinating to read intimate details that helped remind me that we are not alone.  At times though, it felt as though someone was naming out the deepest and darkest corners of my heart that sort of get neglected as I cope with the day to day to survive and to focus on the joyful parts of our unique life.  I can only balance that delicate tension between despair and hope by focusing on God's purposes in all of it.  He shows me daily a sense of joy and renewal that I would not see if our life were just some meaningless accident.

I have found after living with Fragile X for 14 years now, that the emotion of grief can sort of take on a life of its' own...like a second passenger if you will that sneaks up on you at unexpected times.  Sometimes for me it comes out of the blue without provocation...other times it is a quicksand of disappointment that surfaces when we face a more difficult season with Landen.  After a great start to this school year, Landen began having trouble in his special ed 8th grade class at Krimmel.  Not only was he having more frequent meltdowns and issues again, but his anxiety about even going to school was becoming unbearable.  In December of 2012 the school suggested that we make a change of placement by putting him in a special program called  Therapeutic Education Program at another location.  I had never even heard of the program and had no idea what it would entail.  Obviously he had qualified for it due to the problems he faced in the classroom.  They were understaffed and thus unable to meet Landen's needs for individual intervention and constant re-direction that it takes to keep him on task.  We went to visit the new school and were really enveloped by a sense of peace that what we had feared the most was actually turning out to be a great blessing.  He would get one on one direction throughout the day, and they are staffed with people who are trained to deal with kids who can lose control when they feel overwhelmed or threatened.  We felt that the environment would be a peaceful place for him to take a deep breath and have the freedom to grow without trying to fit into the natural demands of larger groups of kids and an over stimulating environment.  Even the lighting is adjusted in such a way that caters to the sensory needs of kids like Landen.  So we took a sigh of relief and signed the papers, praying that his little heart wouldn't be too confused as to why the bus would be taking him to a strange place the next day.  

The transition for Landen went off without a hitch.  He adjusted really well and has thrived there.  If he has an incident of behavioral problems or anxiety, they handle him appropriately and take copious notes about every detail.  It has been a blessing to feel that he is understood, and anything they don't understand about him they have the time, people, and patience to put the puzzle pieces together in an effort to figure it out.  I pray that he will be allowed to stay there as long as possible.  We have even seen his anxiety level at home decrease immensely since his move there.  He is more adaptable than he ever has been (although he is still highly routined compared to typical kids), and we see him showing a growing desire to learn new things and to help others.  It is so funny to have him come stop me if he sees me taking out the trash or lifting something heavy..he will come to me and say, "No mom, I do it for you."  He'll make lots of groaning noises about the heaviness of the load and then say, "I did it!  I carried it for you Mom!  It was veeerrrrry heavy!"  haha  I love to see his little servant heart.  

I am finding that my faith is increasing..God has certainly shown Himself faithful to us.  Just when a situation concerning Landen takes a nose dive, my confidence that the Lord is in control is revived more quickly and my temptation to despair is less threatening than it used to be.  I am thankful that God is using all of this in our life and hopefully in those around us.  I see how Bethany's faith is also growing as she sees God use all of it for good.  

Recently I have been greatly encouraged by a daily devotional called Jesus Calling.  One excerpt says, 

"I want you to live this day abundantly, seeing all there is to see, doing all there is to do.  Don't be distracted by future concerns.  Leave them to Me!  Each day of life is a glorious gift, but so few people know how to live within the confines of today.  Much of their energy for abundant living spills over the time line into tomorrow's worries or past regrets.  Their remaining energy is sufficient only for limping through the day, not for living it to the full.  I am training you to keep your focus on My Presence in the present.  This is how to receive abundant Life, which flows freely from My throne of grace."

14th birthday

riding in the car with his "best friend chloe"

as it is in heaven..

On this Maundy Thursday I am reflecting on the incredible journey that Jesus took in this particular week of history.  In my womens' Bible study today we were considering how incredible it must have been for the disciples to walk side by side the incarnate Savior of the world on a daily basis..witnessing His facial expressions, His words, His prayers, laughter, and tears.  On this Maundy Thursday evening He served them the Last Supper, the intimate encounter that would foreshadow His death and our salvation.  As I read how they dined side by side with Him, heard His precious voice sing a hymn, and had their feet washed by the King of the Universe, I find myself in awe of their subsequent failure to stay awake with Him and pray in the Garden of Gethsemane.  And yet, I also find myself there.  Am I at watch, alert, and steadfast in prayer before the Father as Jesus asked them... (and us) to be?  Can I stay truly spiritually awake even one hour? Jesus expects no less of us than He did His disciples, nor is He unwilling to equip us with the same power they later attained through the Holy Spirit.  He had taught them to pray, "Your kingdom come, Your will be done, on earth as it is in heaven..."  He wants us to live with spiritual eyes and ears, with an understanding that He will bestow upon us the beautiful freedom and hope that only comes from heaven.  

As my mind considers what it could be like for His will to be done "on earth as it is in heaven", I am taken back to the Garden of Eden...where it must have been enveloped by God's holiness, glory, and protection.  He had provided all that they needed in a lush and fruitful place.  Yet, the choice they made in that garden contrasted greatly to the choice Christ made in another garden...humanity chose sin, pride, and death.  Jesus chose obedience, humility, and His own death in order for God's glory to be revealed and for His people to be free.   Surrounded by an already fallen world and snoozing disciples, He was so distraught that He literally bled.  It is an agony we cannot truly comprehend.  But He did, and in choosing to embrace the will of God set in motion the beautiful rescue that changed the world forever.  

In my own life, though I have trouble and turmoil, I will never truly relate to  the pain and suffering that Jesus submitted to that night.  I may at times feel that having a special needs child is such a unique challenge that it surely puts my suffering quota ranking high on "the list"...it can be a haunting view to look down the lens of a life like Landen's that is full of lots of "nevers" and devoid of equal opportunities.  But the Lord is good, and He not only revives me when I am weak, but He fills me with hope and vision when I trust in Him.  When I stay awake to earnestly pray and to begin to see this fallen world for what it is...and for what it is not, my anxiety decreases.  It is not heaven.  It is not our home.  But power comes in weakness, and joy comes from ashes.  I would dare to say that I see heaven's reflection much more clearly through the  haziness of struggle, because in the absence of pain, I would probably not even search.  So I am thankful for the amazing example that Christ set for us in the garden that night, where, though beautiful, its' backdrop was an already broken world, and Christ, though surrounded by friends, was excruciatingly lonely.  He overcame it all so that we might see heaven on earth, ushering it in as we earnestly pray and seek His face.

  Landen looking for birds...=)

Be Thou My Vision

Be Thou My Vision....


"Without God's Word as a lens, the world warps."  

                                      

- One Thousand Gifts by Ann Voskamp


Today is National Fragile X Awareness Day, 2012.  I thought I had posted on this day for the last few years, but apparently I missed one for 2011..so here is a peek into what all is happening in the Wilson's home these days...

This has been an amazing summer so far.  If you have been keeping up with us through Facebook or this blog, then you know that God blessed us with two amazing trips without the kiddos.  We had life-changing experiences and feel that we learned what it really means to relax, and that has been so refreshing even since we have been home.  It's like we have lived in constant adrenaline mode since the day Landen was diagnosed on January 16, 2001...and your body and mind just sort of get stuck in that gear to survive and cope.  Of course we have been blessed along the journey with wonderful family, friends, and a sense of God's overall peace in the midst of it; however, we definitely realized that we must make a point to get away from stress and sort of re-sync our minds and souls.    After Hawaii (if you missed that one see post below) we went to a work conference for Mark in San Diego.  The hotel was awesome.  We made some new friends, ate great food, and they had a phenomenal pool.  One day when Mark was in meetings, myself and a few other wives laid out while being served lunch and cocktails...uh, yeah, i could get used to that!  We also visited some beautiful wineries...

One particular thing that I have continually felt the Lord granting me...in layers, in spiritual, digestible nuggets, is something that is very important in the heart of any parent, but especially for the FX parent, is COURAGE.  For many months God has shown me various verses, spoken through a friend, or whispered to my heart a growing sense of confidence that Landen is, can, and will continue to develop in ways that will free our life in many areas.  So often the strain of what we CAN'T do with him weighs so heavily on us that we easily slide into lowering our expectations.  I think it's easy to do that when you have a child with a disability...on one hand you are their greatest cheerleader and you want to prove to the world that they are still awesome, delightful human beings that have so much to contribute to the world...on the other you are constantly learning to see them through the lens of FX in an effort to understand them, to cope, to be realistic.  Every birthday that passes for him seems to feel harder and yet easier all at the same time.  Over time I have accepted his situation, even embraced it.  But I also die to dreams of things that he's not able to do at every passing age marker....afterall, other 13 year olds are studying algebra, trying out for football, starting to notice girls, and hanging with their friends.  Landen is still watching Elmo, can't ride a bike, and can barely write his first name.  But, this is where the little flame of courage that God is fanning in me all the time sparks new hope and new expectations.

Many months ago I pulled out some Scripture verse cards that I had received at one of our womens' retreats a couple of years ago.  They are really neat because they printed each verse with each woman's name inserted into the Scripture passage...one that caught my heart's attention reads: "So it's you, Jessica, who is in charge of keeping the entire commandment that I command you today, so that you'll have the strength to invade and possess the land that you are crossing the river to make your own." (Deuteronomy 11:8)  I knew that the Lord was speaking to me about taking courage in and through Him in the midst of many situations in my life that God has given me responsibility for, authority over, or a calling to a deeper faith.  Some of this applies to my ministry life at the church and in the outside world, and some of it is to encourage me to champion Landen into new horizons.  That's the beauty of following Jesus...when He gives Truth, He gives WHOLE Truth that speaks life into so many parts of life.  There is not one thing that He wishes to withhold from us, from me.  He is delighted in me when I can hold up the broken, shattered parts of my life that don't make sense, and ask Him to put them together, forming a masterpiece for which only HE has the complete vision.  And Landen is a part of that.  I know in the depths of my heart that God has put such beautiful, eternal qualities in Landen that are unearthed because we have to search through the lens of FX to see them...his condition essentially summons a spotlight onto what God has made in him, because it can't be explained away by typical and external factors..

One benefit to a greater sense of courage in me is a new found determination I have to get Landen back into more public outings!  Some of you know that he doesn't like to go to restaurants or movies, etc and so we are extremely limited in what we can do as a family.  But I see him growing in his tolerance level, building trust in us again that when we take him somewhere he will actually survive it, lol....and I'm sure he picks up on my decreasing fear over at least trying.  We have a weekly outing to Target...he goes in, pushing the cart, and stays much longer than he used to.  He also will go with us to get frozen yogurt- he likes the independence of the self-serve and getting to choose what he wants.  He has also been to the outdoor shopping area of Market Street in The Woodlands now a couple of times...and that is HUGE for him!  He has a wonderful nanny named Lindsey who loves taking him out too...she is very brave!  haha!  But he does so great with her.  I am so very thankful for her courageous heart to know and love Landen unconditionally, and to help me create new experiences.   My next goal is a movie...we'll see =)

kissin' "Izzy" at Chick fil-A

Another HUGE happening in our life is that Bethany just turned 18!  It's so wild!  How did that happen??!!

Then I turned 38..Landen got to sing to me...

I love this piece from One Thousand Gifts: "What will a life magnify?  The world's stress cracks, the grubbiness of a day, all that is wholly wrong and terribly busted?  Or God? ...God is not in need of magnifying by us so small, but the reverse.  It's our lives that are little and we have falsely inflated self, and in thanks we decrease and the world returns right.  I say thanks and I swell with Him, and I swell the world and He stirs me, joy all afoot."  

The lens through which I see the world, my world, is so much clearer when I view it through the heart of Christ.  His view pans out to such a bigger picture than whatever earthly stressor is dominating my attention.  And yet it also laser focuses in on the tiniest appearances of His beauty, grace, and handiwork in my life.  For that, I am eternally grateful.

Hawaii: Amazingly Beautiful, Zero Chaos! =)

I am so excited to share about the unbelievable opportunity we had to go to Hawaii last week.  Months ago, Mark had first found out that he had earned an exciting trip for the two of us to go to San Diego this summer, and we were thrilled and thanking God for the chance to have a paid vacation and some needed time alone.  We had not been alone in 6 years!  But a few months ago, our really close friends in Austin, Chris and Tommy, called to tell us they wanted us to go to Hawaii with them in June.  Because they are travel agents, they had the flights and hotels covered.  We were completely overwhelmed with gratitude and began seeking the Lord for Him to take care of our kids.  My mom agreed to keep them for half the week, and a precious friend named Lindsey was able to keep them the other half.  So God completely provided and took care of everything.  We knew our home and kids were in safe hands, so off we went. 

We had known for a long time that we needed some rest and relaxation.  But I must say, until you truly experience it, you don't even realize how much so.  At least, that was the case for us.  For years we had been dreaming of seeing a tropical landscape.  We had been pointing out to each other various beaches and scenes in movies, magazines, etc that we longed to see one day...not knowing how or when we actually would.  Mark would often joke about others who were on vacation, saying "yeah, they're probably on a beach somewhere drinkin' a mai tai....sigh"  Over the last couple of years, I started responding by saying, "I don't know how or when, but one day, you and I are gonna be on a beach drinking a mai tai...God will provide it!"  (and i didn't mean Galveston, lol) 

I didn't do much research on Hawaii before the trip, which those of you that know me, know I research everything!  But I wanted to be surprised.  And I'm glad I didn't, because I was so completely blown away by every sight and sound there.  When we got off the plane and headed out of the gate, we saw that the airport had half walls, with not even windows so you could see the hills and feel the breeze.  So our first site was lush, green mountains ahead of us.  I was so awestruck I started crying.  Haha.  Little did I know that was nothing compared to what was to come!

We headed off to the first hotel...a gorgeous villa at the Fairmont Kea Lani in Maui, fit for a celebrity's stay.  It was gorgeous.  The resort itself was just amazing.  We walked down to the private beach area and it was the first time I had ever seen teal/blue water splashing onto golden sand that felt like the consistency of baby powder! I had also never seen a beach line that didn't stretch in one giant line along a seawall..it was contained between beautiful rocky cliffs and plants.  Across the water you could see Molokini Island in the distance..I had no idea when we went that we would see other islands in the distance, so that just blew me away!  I love this picture of Mark seeing the water for the first time...

The first night we had an awesome dinner at a restaurant at the resort.  They seated the four of us at a great location where you could look out ahead and see the pools, and palm trees, and water in the distance.  As we were catching up with our friends and dining on exquisite food, I looked up and noticed the sun setting.  All I can say is I have never seen anything like that in my life!  I elbowed Mark and said, "Look!  Oh. my. gosh."  This is one of the shots I took... *note: if you click on the pictures the colors are more vibrant...

The next day we took the road to Hana.  Tommy rented a jeep and we took the top off, so that helped us really take in the views.  I was so overwhelmed by the thick, lush, tropical plants, flowers, and canopying trees.  The views of blue oceans around winding cliff sides and waterfalls were just amazing.  I could have stayed there the rest of my life. 

The biggest adventure on that drive was when we decided to go off the beaten path in search of some waterfalls.  We parked the jeep and made a treacherous hike across rocks and streams, till we came upon this site...

One of our dreams was to swim under a waterfall, so that's what we did! Ice cold but so refreshing and wonderful!

Moving on, we stopped at one of the famous black sand beaches.  This was one of my favorite sites.  The color contrasts of the plant life, blue water, and black rocks was beautiful.  I especially loved the arched rock formation out on the water...just the type of thing we had been wanting to see sometime! Here are some of my favorite pictures from that beach...

It was so cool to learn about how volcanic activity had formed the black rock when lava flows hit the water over many years' time.  It made me think of how beautiful it is when nature's chaos transforms into something so beautiful over the years, and actually becomes a sanctuary and place of inspiration to those that encounter it...hmmm...sounds like what the Lord does in our lives too! =)  It is so confirming to my heart to see the way God moves in His creation and in us, making all things new and beautiful in time, and more captivating than without the changes and transformations!

There were so many other amazing sites on the Road to Hana, but this post would be quite long if I were to record them all! 

The next day we snorkeled out at Molokini Island.  It was so beautiful.  We took a really neat boat called Four Winds and the crew did a great job showing us around and serving us lunch.  The water was so clear, the fish beautiful and the reefs so colorful.  We had never done anything like that before.  Here are a couple of shots...

Another day we had lunch at a famous place called "Mama's Fish House"...it was situated near the water at a beautiful beach, so we got some good pictures there too...

We also loved the green hills everywhere around the island.  It all reminded us of one of our favorite shows, "Lost"...

We took another snorkeling trip, this time to the island of Lanai.  It was beautiful too, and was the first time we ever saw sea turtles =)

The guide told us that he wasn't sure if we would see dolphins, so I didn't get my hopes up....but because apparently God was in the mood to show off even more than He had already, literally dozens of them appeared out of nowhere!  They were jumping and spinning and moving so much it was hard to capture pictures, but I did get a little video =)  (note: the pauses are when i snapped a picture)

Such a wonderful experience seeing so much of God's awesome creatures in their own environment! 

We also went ziplining one day at Kapalua...Chris and I were SO scared at first!  My heart was beating so fast before that first line...i mean, throwing yourself off a mountain side is just so counter-intuitive!  But we made it and the views and wind in our face was worth it! 

On Thursday evening we moved to another great hotel, the Hyatt Regency Resort.  It had amazing views of the beach, an awesome pool with waterfalls and water slide that the four of us totally enjoyed like kids!  Haha it was soooo fun!  I wish I had pictures of each of us on that- it was really funny watching each other come out of the chute at the end! 

We also witnessed the absolute best sunset ever here.  Mark and I were walking along the beach and noticed the sky colors begin to change.  The pictures I got with my Canon Power Shot just blew my mind.  I didn't touch these up in any way!  God's painted sky just as He created it!

That was our view to the right side, here is the view to the left...

More beauty developing as the sky continued to transform....

We went to our first luau at the Hyatt.  It was great fun.  Loved the real hula girls and guys, the food, the scenery, and getting to share it with our amazing friends.  And, we finally had Mai Tai's on the beach!!!

I also loved the penguins that were at the hotel...I wished Landen could have seen them..so precious!

We had such a phenomenal time.  We can't wait to go back!  (There are more pictures on my Facebook page if you're interested)  All of the food was outstanding and the people there were so inspiring.  They really do live with an "Aloha spirit" that we seem to lack on the mainland.  I would love to take Landen and Bethany one day.  I feel that the culture there would embrace Landen with open arms.  Thank you to our wonderful friends who let us share the joy of such an unforgettable experience!

Chris and Tommy

Meanwhile, Bethany and Landen had a great time with Lindsey and my mom...here are some pics from their week...

running errands with Lindsey

Bethany and Landen

on the way to Nana's house

with Lindsey =)

on carousel at Kemah

Next stop: San Diego!  Mark will have a couple of work meetings/award ceremonies, but we should have some decent time together.  Will post pictures from that trip when we get back...=)