Friday, March 29, 2013


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' 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"

Thursday, March 28, 2013

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" 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...=)