The Tight-Rope of Parenting a Special Needs Child

A few weeks ago we had a meeting with Levi's service coordinator with the Dept. of Developmental Disabilities which was full of dozens of questions that we can now answer in our sleep.  But this time she came across a question that turned the meeting from a mundane hour of anticipated monotony into a renewed reality of pain that always surprises the depths of my fractured heart.  The question on her paper read, "What does the client want for his/her future?".

After we re-worded it and he finally understood the concept, he answered with a grin.

"I just want to walk.  Maybe for tennnnn minutes (as he held up his two hands indicating 5 minutes on each hand, that steadfast grin surely in place).  Maybe we can do it tonight".  He casually returned to his iPad game and his sweet coordinator and I looked at each other with heartbroken tears streaming down our cheeks.

How do you kneel down so you can make eye contact with the sweetest 5-year old boy and validate such a simple dream yet lovingly tell him that may not be what God has for his life?

I've gone through my fair share of "It's not fair" bouts with God, but to have to impart in faith His absolute goodness and promise of perfect plans to my sweet boy felt like it was too much for me.

Probably because in my own heart I don't trust God in that area of life.  Finances, yep He'll bring the work.  Community, He's working on it.  His presence in tough times, getting dicey.  His goodness when it's unfair, the walls go up.

I'd let my heart resemble Levi's legs.  Rigid, tight, and unwilling to bend without a lot of force.

Being a strong advocate for a special needs child while still trusting fully in God's plans is a very tight rope to walk as a parent.  I've repeatedly erred on the side of fight harder, hold on tighter, push, push, push.  I know there's value in these characteristics, but when it's not held in one hand with the other hand cradling God's promise of sufficiency and peace no matter what the outcome may be, it creates an anxious and control-seeking heart. 

The morning of our appointment with the podiatrist a few days later represented a big shift for me.  The die hard advocate gave way (finally) to the most trustworthy Advocate of all.  The rigidity of the tissues within my heart loosened fully for the first time since hearing "Cerebral Palsy".  My tightly closed fists opened to Levi's Father as my cheeks were saturated in tears of freedom instead of frustration.  NOTHING can take away the bright future that is ahead of Levi.  Not a wheelchair or a life of physical pain or limitations.  The spirit that God placed within that child will prosper and shine no matter what, and maybe even more so because of his physical handicap.  He will soar, he will triumph.  Because he is God's creation, perfect and complete, just as he is. 

A few hours later I could only credit my patient and gracious God as we heard the doctor proclaim with conviction that our year-long quest for casting was the right thing to do, and that he'd cast his own child without hesitation.  He not only believed that Levi had a great shot of success with serial casting but understood our fight with the insurance companies was nothing short of disastrous.  He then went on to share how often physician's lose sight of why they began practicing medicine to begin with - to help people.  He said he knew that the right thing to do in this situation was to treat Levi with or without the authorization from the insurance company, and he was happy to provide all of Levi's short and long term care at no cost.

We are walking out the door in 5 minutes to go see God's plan unveiled for Levi in this next stage of life.  Who knows what the casting results will hold, except for the One who's plans are perfect.  I praise you Papa, for working your perfect will in Levi's precious life, and for your grace and patience with me as I learn to trust in your promises.