A Song of Joy

On October 6, 2010, I met a precious little Cherub. As part of the many "hats" I wear as a Special Educator, one of the most difficult and at the same time most rewarding, is serving as a Hospital/Homebound Instructor for children with significant disabilities or catastrophic illnesses.  My current roster includes several children in a local skilled nursing facility, most of whom are terminally ill.  [As always, the names of the children have been changed to protect their privacy.]

When you teach terminally ill children, you go in the door knowing you're going to lose them sooner rather than later. That knowledge doesn't stop me from wondering "Why?", even though I know the theological answer.  "We are born into a fallen world with the stain of Original Sin upon us, which is why we need a Savior."  I do understand that and I trust Father God to always do what is best according to His Plan.  Yet when I'm standing at the bedside of a dying child, I find myself wondering what possible reason there could be for the suffering I witness.  When machines are the only link between life and death, what purpose could there be for this kind of life?

Leigh was 6 days away from her 1st birthday when I met her and I was saddened to learn that she was DNR. (Do Not Resusicate) She had ebony skin with milk chocolate cheeks. When her eyes were open, I could see that they were dark like coals, but there was no sparkle in them.  One of the CNA's had bathed her, braided her hair with bright red ponytail holders, and dressed her in a ruffled red and white dress.  Tiny red socks with a white lace ruffle and black patent leather "mary janes" completed her ensemble.  But the perfect picture was marred by the trach tube in her throat and the telltale PEG tube (for feeding her) running underneath her ruffles.

It broke my heart to stand by her crib, hold her tiny hand and stroke her soft cheek.  Her eyes only opened half way because she was so weak, but she looked at me when I called her by name.  One of the nursing staff told me her history which was another heartbreaker.  {How many times, O Lord, must I hear of men who rape defenseless girls?  The very young mother of this child was raped by her uncle.}  A judge had ordered that Leigh be allowed to die naturally because there was nothing medically that could be done to cure her or to make her quality of life better.

That day, I didn't know how long she would be with us on earth, but I told Leigh that I'd meet her at the big tree with a swing in Heaven so we could take turns swinging.  That's where I tell all of my terminally ill kids we'll meet one day.  Okay, so there's no theological basis for that - but I know that the Bible tells us we will know others and be known in Heaven, so allow me to hold onto that pleasant thought in this situation. 

As I stood by Leigh's bed that day, I prayed for her and asked God for His mercy in her life.  I asked God not to let her linger one moment past when her purpose here on earth had been completed.  And I told God that for as long as I have her, I will praise Him for how He is using Leigh to refine me to be more like Him.

When I went back on Monday, her crib was empty.  Leigh didn't live long enough to celebrate her first birthday on earth - but make no mistake, she's celebrating Eternal Life in Heaven!  She has been reborn into a perfect body and will never again know pain or struggle to take a breath. 

Did I shed tears for my precious Leigh?  Oh, of course I did.  My tears are falling now as I tell you about her song.  The sight of her empty, stripped crib took my breath away.  A small part of me was thankful that I did not have months or years to love her because the pain of her loss would have multiplied with every additional day she was "mine".  But, oh how my heart rejoiced from the assurance that she was now in Heaven with Jesus.  Little Ones do indeed belong to Him.

I have another precious child whose time on earth is growing shorter.  {His mother was a resident in a facility for mentally retarded adults and she was raped by another resident there.}  His name is Stevie and he is in a permanent vegetative state.  I am told by medical staff that this is much worse than being in a coma.  He is cortically blind, but even if he had perfect sight, he would be unable to see me.  Although his hearing is normal, he can no longer hear my voice.  Stevie, too, has never been able to breathe on his own.  Unlike Leigh, he relies on a ventilator for every breath.  Like Leigh, he has a PEG tube for nutrition and he is attached to an apnea monitor which continually diplays his Oxygen Saturation and Heart Rate.  Because he's on the ventilator, his O2 sats stay at 100%.  His heart rate is the critical number to watch.

When I first met 5-year-old Stevie a little over a year ago, his heart rate stayed between 70 and 80 beats per minute.  Over the months, his heart rate has steadily increased.  The past couple of weeks, it has stayed between 125 and 135.  This is one of the signs that his little heart is in more distress.  He used to have a few small seizures - maybe one or two during the hour and a half that I "teach" him.  Now he is in "status epilepticus" which means that one seizure doesn't end before the next one begins.  His entire body continually twitches.  It is so painful to watch the seizures twist and jerk his body.

Maybe you're wondering what I could possibly teach him.  That's okay, I wonder too.  I spend our time reading children's books aloud and talking to him.  I also spend part of our time praying for him.  Just as I prayed for Leigh, I pray that Stevie won't have to spend one more moment on earth beyond the fullfillment of God's purpose for his life.  Although I know my time with Stevie is drawing ever closer to the end, I cannot know when I will walk into his room to find his bed stripped and empty.  I cannot even be assured that his heart won't stop while I'm there holding his hand, stroking his arm or caressing his face. 

I won't lie to you and say that it is easy, because it most definitely is not.  Losing one of "my children" is indefinably painful, yet I cannot describe what a blessing they are in my life.  God must have a reason for allowing children like Leigh and Stevie to survive - there must be a purpose or a lesson in their lives.  But the lesson can't be for them; therefore, the lesson must be for those of us God brings into their lives.  God must be doing something in us that can only be accomplished through them.  God must be changing my heart in some way through them. 

For that reason, I will sing a song of joy for their lives and for the privilege of knowing and loving them - no matter how brief or how long our time together may be.  Before you attribute some sort of special ability to me, please STOP and give the Praise and Glory to Our Heavenly Father instead because that is where it rightfully belongs.  If you see Jesus in me or in the lives of Leigh or Stevie, then their journey has accomplished what God intended in you.

"Change my heart, O God; make it ever true. 
Change my heart, O God, may I be like you.

You are the Potter, I am the Clay. 
Mold me and make me; this is what I pray.

Change my heart, O God; make it ever true. 
Change my heart, O God, may I be like you."