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...=)

pray. trust. repeat.

I cannot believe it has been so long since I have written anything. There seems to always be so much swirling around in my head that I just can't stop and focus on parts of it to share. But I want to put what I can in writing, knowing that one day it will hopefully serve as a journal of how God moved us through it all.

First of all, to update you on what's happening with Landen these days, he just finished his 5th grade year. I can't believe it. I am happy to report that he had a wonderful year at school. He had a great teacher, Mrs. Jenkins. She and her aids really followed the structure that the therapists gave us. She has a wonderful, upbeat spirit that fostered much growth in him. Though he is still very much a pre-schooler mentally and academically, we are pleased to see him reading more sight words, identifying coins, and growing in his conversational skills. On the heels of such a great year, we actually considered holding him another year at the elementary school. (Also because the thought of sending my sweet little 60 pound boy to the junior high just makes me tremble.) But the school officials lovingly talked me down off the ledge, and so off to jr high he will go. ( With much prayer!) I have been keeping my emotions at bay about this new change for months now, knowing that I had to face the fact that my overgrown toddler is getting older, and it is time to transition him into more life-skill centered work and exposure. This morning when his bus came for the last time to pick him up, we could not physically get him to go. He perched himself on top of his bunk bed in hysterics and would not come down. So I went out to meet the bus and tell those two lovely ladies goodbye for the last time. They have been so wonderful to Landen and to our family. All of my emotions came to a head at that moment, and I balled my head off when they drove away..also in disappointment that Landen would miss his last day at Metzler. I think he got confused as to when the "last day" of school actually was, and so had mentally moved on. Two hours later, he said "I sorry mommy. The bus coming, I go to school?" Uh...yeah. Little too late buddy. Dad had already gone to work, so I had no way of getting him there. Joy....

Joy.
Lanny still makes us laugh every day with his little personality...whenever Bethany leaves the house, he asks if he can "go to Sissy's room"...if we say yes, he says, "Yay!!" and runs in there to watch her TV. Not sure what is so appealing about watching TV in a messy teenager's room, but apparently it is to him.

His other favorite thing lately is to wake up at 4 am, turn on the TV in his room really loud, then the TV in the living room, and he will sing along to certain shows' theme songs at the TOP OF HIS LUNGS. I cannot figure out why he is so wired at that hour-his medication is supposed to keep him asleep. We wake up irritated by it for sure, but can't help but laugh sometimes when we hear him singing like that.

One day a friend and I were in deep discussion in the kitchen about the hardships of life, and then we felt a presence behind us. We turned around and saw Landen standing there staring at us with a Bob the Builder hat on his head..we both broke into laughter cause it was just so unexpected at that particular moment. Hard to explain without being there, but it was just one of those little moments with him that make it all ok. =)

A couple days ago our good friend Mike said that when he thinks of Landen, he thinks about how the Bible says "the last shall be first" in heaven. He said he imagines in heaven that Landen will be giving all of us orders! I said, "are you kiddin' me? He gives us orders now!" Goodnight, we are at this child's beckoned call! He is definitely in charge of this house most of the time...even though we don't like to admit it.

As for Bethany, well she is very relieved that, as she puts it, she "survived her freshman year." She did great, and actually got exempt from all of her finals, so she finished the year on a high note and with minimal anxiety. We are proud of her too. This year had its' share of trouble, though, as we have had to keep a tight reign on her influences and choice of friends. It is such a tough battle to teach kids to be missional in their hearts but cautious with the things and people that impact them in return. She will turn 16 on June 25....now that's just insane! Now if we can just figure out how to keep her entertained all summer....

Mark and I find ourselves in an interesting time. God has really got us in what feels like a crash course spiritually. He is revealing such new things to us by opening spiritual doors we thought we had opened and understood, but I suppose He is taking us further in, where the treasures are more distinct, more tested by fire, more unique. As Mark reminds me, that's why it's called "The Living Word". This juncture of our spiritual journey is probably best summarized by this thought by Frances Frangipane:

"..the purpose of all aspects of spirituality, warfare included, is to bring us into the image of Christ. Nothing, not worship nor warfare, neither love nor deliverance, is truly attainable if we miss the singular objective of our faith: Christ-likeness."

I have consumed his book, The Three Battlegrounds, twice now. It is packed with Truth. Another great one is Secrets to Spiritual Power by Watchman Nee. Every line is so deep, you can only sort of digest a section at a time. But the spiritual food is so satisfying. The more we learn, the more questions we have, and so we are led to seek even more. I feel the Lord teaching us to not pray for seasons of peace or relief from hardship if the goal in our flesh is for anything other than conforming us to the image of Christ. If the result would be complacency and missing out on what would truly constitute as His sufficiency, then we don't need it. And even as I write that, I pray that God would keep me in the cleft of His rock, clinging to Him so that my wayward heart won't stray too far on any given day that I feel like losing it! I have such a tendency to pray, wait, trust, start to get worried, pray, then when I feel like we've met the 11th hour, I begin to panic and think God must be wanting me/us to find some different way out of the situation. But He is clearly showing us that faith goes all the way...keeps trusting, and focuses on His character impressing upon our hearts..more than on a tangible "answer". I have come to believe that it is an easy temptation to focus on Scripture in a way that causes us to quote passages like Jeremiah 29:11 because we seek the hand of God more than we do His face. It helps me to remember that Christ wants us to know His character by Scripture, and knowing His character will provide a way for us to truly trust Him in a manner that accepts His will and His answers with more peace.

So I pray, trust, pray some more...pray for my own fear for even writing these thoughts because it's so much easier said than done. But I must, and I must keep giving it over to the Lord. I face so many fears as I write this...one being a summer of trying to keep Landen occupied- knowing that he doesn't have the greatest track record in summertime due to a lack of routine and an onset of restlessness. So I would ask for your prayers for our family for this season.

Thanks to all of you who encourage me to write. It is amazing to me that our crazy life is interesting to others! I also thank God for our family and friends who choose to roll around in the trenches of life with us. A friend once said, "a burden shared is half as heavy". For that I am grateful. And alive.