gratitude

Today I feel as though I am emerging from a thick fog.  Oh, I didn't realize I was in one until it was so dense I could no longer see.  It's not a nice experience to be suddenly fumbling in the dark in places that are usually  familiar, even fulfilling.  Somehow I had slipped into a space of loneliness.  Various circumstances  were weighing heavily on me, and instead of sharing the burdens with anyone, I carried them alone.  And before I knew what was happening, I was being crushed underneath it all.

A few nights ago I was honest with Mark at just how despondent I was feeling.  Actually, I sort of just fell on him in a heap of tears.  We both admitted to each other that this life-of-special-needs causes us to feel like aliens with two heads, and over the years we have increasingly felt more isolated as a family.  Now, don't get me wrong, Mark and I both have many close friends, people that we share many joys and struggles with..but when it comes to feeling anyone can relate to our whole family dynamic...?  Not so much.  Of course, this is no one's fault.  It's just reality.

In all honesty, this reality even hits me in Fragile X circles with other parents and other children with FX.  For example, we were supposed to go to the Houston FX Walk in Kingwood last Saturday..but we didn't.  Frankly I was sinking as I thought about our experience last year.  You see, it's all we can do to coerce  Landen to get in the car and try to explain to him where we are driving and why...he's really only agreeable to destinations such as Target, Walmart, or the car wash.  Thus the whole drive there is consumed with anxiety and whining.  Once we got to the walk last year, Mark had to work with him for thirty minutes just to get him out of the vehicle..I went on to register us and get our T shirts, which of course Landen would not put on.  Finally we convinced him to go jump in the bouncy houses they had in the parking lot, and he did that for a little while.  But of course he immediately went back to the car...it's a pattern that is repeated over and over in scenarios like this...Mark was forced to go sit in the car with him while I participated in part of the walk, caught up with a few parents, and ate the lunch we had paid for..taking theirs to them in the car. Not exactly the sense of community we were hoping for.

The other piece of this scenario that causes me disappointment is seeing how many of the FX kids are out and about participating in the walk while Landen has barricaded himself in the car!  So, basically, we kind of leave these scenarios feeling like...dare i say...losers.

So, back to the scene of my meltdown a few nights ago...I was also feeling guilty for not going to the walk.  I so want to participate in and support the efforts of this fairly new support group that has sprung up in Houston.  We went so many years with nothing like it here.  As Mark and I continued to talk and share, we both named that, in the midst of recent troubles, how grateful we were for what we saw as one really great thing that was going on in our lives...Bethany's new job.

She has been working for my mom in new home sales for a builder for about a month, and really loving it and thriving there.  It has given her a great sense of accomplishment and hope for a bright future after many years of her own struggles and trials related to FX.  But Monday night that all changed...Mom got a call from the HR department who realized it was against company policy for two relatives to work for the company.  So she had to tell Beth the bad news.  We have all been sick to our stomach over it.  It's been really hard to accept that it's over.  And something happened to me when that occurred.  It felt like a bright light had been extinguished.  I felt a sense of hope immediately disappear in my heart.  I was in a free fall.

Then I got angry.  "Lord, why?"  For now I can see no good reason for this happening to her.  It's been so hard to see her have to mourn this loss, and knowing she had done nothing wrong- it was simply company policy.  I knew I had to reach out for prayer- through facebook, friends, church.  I felt so low that it was almost more out of a spiritual discipline that I asked for prayer, rather than my own faith in those hours.  Over the next 48 hours I felt my spirit lifting little by little as many friends prayed for our family.  I know there are so many mysteries to life and stretches of this journey that I don't understand.  These occasions bring me to a crisis of belief.  Will I choose faith and trust in the Lord?  Or will I whither away in bitterness and anger, shrouding my heart in cynicism?  It is then that I must take notice of all that is good and redeeming in my life, in our home, in our hearts.  I've said it before and I choose to say it again...I know that following God cannot be conditional...only staying faithful when the landscape looks exactly the way I think it should.  That's. not. faith.

Times like this, especially as Thanksgiving approaches, I remember the gripping lyrics of Nichole Nordeman's song "Gratitude".  No single song describes our family's unique faith journey better than this one.

Send some rain, would You send some rain?
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy downSurely You can see that we are thirsty and afraid 

But maybe not, not todayMaybe You'll provide in other ways
And if that's the case . . .

(Chorus)

We'll give thanks to You
With gratitude
For lessons learned in how to thirst for You
How to bless the very sun that warms our face
If You never send us rain

Daily bread, give us daily breadBless our bodies, keep our children fed
Fill our cups, then fill them up again tonight
Wrap us up and warm us through
Tucked away beneath our sturdy roofsLet us slumber safe from danger's view this time
Or maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

(Chorus)We'll give thanks to You
With gratitude
A lesson learned to hunger after You
That a starry sky offers a better view if no roof is overhead And if we never taste that bread

Oh, the differences that often are between
What we want and what we really need
So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case . . .

(Chorus)We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace
But Jesus, would You please . . .

song 'Gratitude' on youtube

My favorite line is "that a starry sky offers a better view if no roof is overhead".......  I know that when we are missing various "roofs" in our life, we feel exposed, cold, afraid, and small.  But it gives way to the view above that is expansive, endless...and much bigger than we are.  We have no choice but to release our fear into the hands of our Maker.  We stand much better without such a heavy load on our backs.

abundant skies

One of my favorite songs I've been re-obsessed with lately is Switchfoot's "Learning to Breathe".  I've been listening to it in the car over and over for the last week.  It has a nice driving acoustic intro and honest lyrics that speak of disappointment, growth, and new beginnings.  While cruising to the church office yesterday, I kept noticing the gorgeous skies above the land of middle class suburbia.  Then I noticed the chorus of the song echoed the view that had captured my attention: 

 "I'm learning to breathe

I'm learning to cry

I'm finding that You and You alone 

can break my fall

I'm living again

awake and alive

I'm dying to breathe in these abundant skies"

It reminds me of the seasons of life...times when our hearts are consciously aware that life is full of such a delicate tension between strife and peace, obstacles and triumphs, anguish and hope.  Often in an effort to control that tight rope and prevent it from snapping, we numb ourselves with apathetic routine or set our minds on an auto-pilot cruise.  We distance ourselves from others, for fear they won't relate to our pain, or worse, might actually shun us because of it.  Having been in ministry for many years now, I have spent much time hearing similar concerns and reactions from people.  It seems to be common that if they don't have much experience living in a community of faith where they feel loved, accepted, nurtured and encouraged that they essentially don't know what they are missing.  So they put on a game face and go through the motions, feeling a false sense of control in that their secrets are hidden and their pain is buried deep.  Therefore, regular life and routine can continue.  Having gone through much in our lifetime, one thing Mark and I have always prioritized is staying in community.  We have had the gift of friendships, mentors, and even counselors to share our burdens with throughout the years.  And it has made all of the difference.  Rarely has any one of these individuals been able to relate perfectly to our situation-especially in having a special needs child...but when God knits hearts together in His capacity for mercy and love, it doesn't always matter.  

I experienced this recently when I was able to catch up with a younger friend of mine.  This girl has a palpable love for Christ and a contagiously sunny disposition.  She seems to bounce into a room with an almost child-like quality of joy, emanating hope and mercy like perfume.  On this day we got to talking in the car and she shared with me how she had suffered a miscarriage a couple months ago.  I listened as she spoke of her heart's struggle to harmonize the deep pain of loss with the tune of Jesus she has so joyfully sung without reservation.  It is a jolting and disturbing thing to have your heart sort of ripped out of your chest, then handed back to you with crevices and cracks that are unfamiliar.  She was in a time of seeking..her broken heart still beating for God, and trying to adjust to the aching that was not there before.  Though I have not experienced a miscarriage, I do understand the emotion of grief.   Loss has a way of turning  the sod you walk upon into a wasteland-everywhere you look of what was once familiar comforts are now rotting and decayed...hardly recognizable.  It can be a lonely and isolating experience.  But because God "the lifter of my head" Psalm 3:3, pulls our gaze upward, we discover those abundant skies are still above us...providing just the right balance of shade and light to show us the way out.  We spoke of how God was showing us both deeper, more intricate parts of His heart that sustain us in ways we never even knew needed.  

When I put Landen on the bus each morning, it is still dark at 6:20.  He always, always has to stop and turn around to look up at the sky, pointing to the stars and searching for the moon.  When he finds it he makes certain that the bus driver knows.  I love that about him...he's not distracted by the usual concerns of life, so he really drinks in his surroundings.  When the bus drives away, I find myself more and more lingering in front of the house, taking a moment to look up and take in the view.

"He brought me into a spacious place;

 He rescued me because He delights in me."

2 Samuel 22:20

  

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.