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.
 

For an Hour in Time

The playing field was level, no handicap taken into account, the score started zero-zero,
for an hour in time. 

He felt the wind on his face and the pedal under his foot, he had nothing warring against him,
for an hour in time.

He could go the same speed, he had the same fighting chance, nothing was holding him back, 
for an hour in time.

It's his differences that set him apart
His special soul that changes our lives
But once in awhile it's nice 
To be the same as all the others
Even if it's just for an hour in time.  






    

New Life

Lately I’ve been praying for new life.  As I kept praying all I could see were branches that were so damaged by the storms that they were surely dead.  Dry and brittle, worn and ragged.  But I knew that beneath the soil, deep down where no one could see, that there was life, and He was that life.  Rooted and anchored in the Son my weary branches would give way to new life again.  Spring would come, brown would give way to green again, and the barren branches would be a season in the past.  Let it come God, let it come.  I’m ready.  I’m so ready. 

And He answered me.

He surely answered me. 

Ya know the kind of story that comes along once in a while that is so good it’s almost hard to believe?  That as you hear more of it you keep saying, “You have GOT to be kidding me!”. The kind of story that seems to be just a little too good to be true.

The God kind.  I love those stories!! 

Well I’ve got one., and it’s GOOD!    

We are relocating indefinitely to the mountains.  Where it’s green.  And anything but barren.  A place that screams of life.  A place that’s slow, a sanctuary of rest.  A place with more family.  A place full of answers to our prayers.

A place where my kids will grow up with their grandparents and aunts/uncle around every single day, not just on holidays.   Somewhere that’s full of hands eager to love our family and lift our hands, a place where mama can breathe more and daddy can slow down. 

A place where our sweet boy can get ALL of the treatment that he needs with caretakers who listen to us and believe the same as we do, that botox is not the answer and serial casting is the ideal course of treatment for kiddos like Levi.  A place where our concerns are met with understanding and solutions instead of confusion and disappointment.  A place filled with people who are willing to design a custom plan just for our boy, who are invested in his well-being without even knowing what a gem of a soul he is.  Caretakers who care.   

A place where he can receive all of his weekly therapies instead of being just another name on a waiting list.  A place where he has the best shot at thriving, whatever the outcome may be.  A place of abundance.

A place where we can be a family, to connect, to start fresh.  A place to plant some seeds and watch them grow. 

A place where my soul will find new life. 

Time Out

I hit a pretty big low a few weeks ago after a consult with the neurosurgeon at the children’s hospital.  After he left the room and we were loading our little pod into strollers and carriers I asked Mike to head to the car without me.  I sat in the cold sterile room and just cried.  And cried.  My body was finally doing what my hopefully heart and optimistic mind wouldn’t do. It broke down.  Because it was time.  And there wasn’t a bright side to this meeting. 

As I walked to the car and we rode home in silence the phrases of our consult kept replaying in my head. 

Quarterly Botox injections is the only treatment available // Not FDA approved so we use an off-label // We’ve taken this poison and harnessed it for good! (with excited smile) // He won’t ever walk without it // Rarely any side effects, but if he has any sign of respiratory distress go to the ER immediately // Families line up for this like clockwork every three months (insurance won’t approve it any sooner), they just love the function it allows their children to have // When it wears off around 8-12 weeks the muscles return to the previous state // In 15 years of injecting Botox for muscle relaxation I’ve never seen a child maintain the stretch they had after the neurotoxin wears off // When his muscles build up a tolerance we will play with the numbers and up the dose // We need to reintroduce oral muscle relaxers to control his tight tone // When he’s old enough we can insert a pump in his tummy to disperse muscle relaxers into his spine // Around age 7 he will be a great candidate for neurosurgery //  There is no approach outside of chemically interrupting his neurological patterns with pharmaceuticals  //

This is the answer.  Anesthesia and controlled poison injected into his legs.  Over and over again.  With no long-term benefit.  And without all of this he won’t walk. 

Talk about immediate guilt and shame when we don’t sign the dotted line with eagerness. 

Talk about feeling trapped.

Talk about an emotional roller coaster month in and month out as we wait for the toxin to bring comfort and mobility but dread the week it goes away.  And the pain and confusion for a little boy’s heart as he can’t understand why he can walk sometimes and other times cannot.  And despite short seasons of progress he really isn’t getting any better. 

And the more we ask questions and delay committing to this treatment plan the higher the tension gets between them and us. 

I think being Levi’s advocate took some getting used to.  I’m a people pleaser you see, and being an advocate means to plead on someone else’s behalf.  And sometimes that ruffles feathers.  Or it takes the damn feathers off completely!  And that is okay, that is what I’m called to, and I trust in a God who will give me wisdom to know His plan for Levi and who has wired me with instincts that I need to trust. 

So as my sweet boy’s advocate I call a time-out.  We are heavily pursuing the serial casting approach as an alternative treatment plan and God has opened a potential door.  We will know more soon and will keep you posted.  We covet your prayers, this road is hard and confusing at times.  Thank you to all who read. 

Mike and Kelli

A day of happy tears

I had a meeting this morning at Levi's school that I want to share about, but first let's take a look at yesterday morning.  Mike left for work pretty early and I frantically prepare to leave the house at 7:40 for an 8am "IEP" meeting at Levi's school.  Everyone is dressed, groomed and fed, baby is changed and nursed, stroller and walker are in the car, and lunches are packed b/c we aren't circling back around this way (wait, forgot a lunch, and the dramatic crying fit ensues)(not from the mom).  So we rush out and get to my meeting EARLY.  This is not a joke but I actually snapped a picture of the time on my phone and sent it to Mike bragging that I made it there at 7:57.  Well my bragging rights were quickly reneged when I was told that my meeting was Thursday not Wednesday.  Wait... what day is it??  I've got the months down by now, but keeping track of days is a tricky task!  So all 4 of us with grumpy attitudes hoof it back to the car (picture a sit & stand stroller plus Levi in his walker a half mile from the school entrance).  Fail, fail, fail. 

So today I had a nice leisurely cup of coffee (or 2) and rounded up the gang for another round... on this alleged "Thursday".  We got there at 8:12 (no photographed time-stamp this time).  The toddlers had bed-head, they ate bread for breakfast (not even toast) and Kai was in his overnight diaper and had yet to be nursed.  We were a tardy yet very happy bunch of ragamuffins.  Kai got his milk and fresh shorts I promise.  Next time I'll proceed like round 2 the first time! 

Onto the meeting!  What WONDERFUL progress Levi has made since October.  In the IEP meeting each therapist goes around the table and talks about the goals that were previously set, how Levi is doing attaining them, and then they set new goals or revise current ones.  Well.... in just 5 months Levi has reached all of the goals that were set in the fall!!  These include:  
Occupational Therapy (OT) - using scissors to cut along straight lines and 50% of the time cut out simple shapes, lace small buttons with thread, write his name, can almost open his own juice box or milk carton during snacks, and lots of other things!  
Speech Therapy (SP) - pronouncing syllables in multi-syllabic words, reduced clustering in his speech, talks in 5-10 word sentences 75% of the time.  
Physical Therapy (PT) - sitting criss-crossed on the floor unassisted for short periods of time, maneuver his walker from cement to grass and re-direct it when he's stuck, transition from his walker to the snack table chairs without falling 75% of the time, sit on the toilet (after being assisted on), etc... 

When he began going to the special needs program he wasn't talking intelligibly and had very few OT skills.  It has only been 18 months and his progress is such an encouragement to his therapists and teachers.  So much in fact that they are recommending that he be placed in a pre-K class of 100% typical kiddos in the fall!  This is a BIG deal friends!!

I sat across from 6 people at 8:50 this morning and heard a resounding "he's ready for more" from them.  Person by person nodded yes with a warm smile as they told me that he did it.  He's making it.  He's triumphing.  He is thriving and blowing them away.  And he needs more of a challenge.  So we say bring it on!   

One of the things that makes this journey with Levi so difficult is that we have to operate with many unanswered questions.  We don't know what parts of his brain are hindering what parts of his body, so when we get victories like this it's a sweet, sweet day.  It's as if an answer was whispered to us in response to some questions that our weary hearts have stopped asking.  It's a day of rejoicing over a lot of hard work and dedication from the strongest little person I know.  

It's a day of happy tears.