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"


  1. Jess, I just read this one today and I am so thankful you have this depth of love for Christ and dependability that you do. As you have stated before
    " God became my Father" when you were young - there was a purpose even in those days to prepare you for these 14 yrs with Landen to lean into the sweetest and largest arms there are - Christ our Lord to carry you and guide you and love you. Having Landen and his sweet spirit trumps the smartest and brightest students there are out there - they do not possess what Landen possesses. We have been take to a higher level of understanding, appreciation and love than the "perfect families" can ever know. And I am thankful. I love you, Mom.

  2. Thank you mom for the note. It means the world to me and YOU are such a blessing to all of us. You have walked through all of it with us in unconditional love. Love u very much ;) love jess