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."

A Song of Provision

During the 1985-86 school year, I served as Special Education Homebound Teacher to a five-year-old minx.  {Names have been changed to ensure privacy.}

Catey was raped by her father at the age of 3, contracted Hepatitis B, and Post Traumatic Stress Disorder which often manifested in episodes of rage.  After 25 foster homes in 18 months, she was placed with Jane and Artie, a couple in whom God had placed the desire to become foster parents to children with special needs.  Jane had been my paraprofessional in a preschool class for students with significant disabilities several years earlier, so she was confident that they would be able to help Catey.

Back then, there was a lot of misinformation about how Hep B was passed from one person to another.  There was much fear among parents of other students and the faculty at the school she would have attended.  Even after talking with doctors in New Orleans and providing information to parents and teachers, there were still threats of a mass exodus of students and faculty if Catey was allowed to attend school on campus.

I don't know if I can adequately describe how freaked out people were about Hep B in those days.  One of the secretaries in our office was undergoing chemo treatment at the time and she was concerned about contracting it from me simply because I was in the home and touched  Catey or things that she had touched.  My husband at that time was concerned that I would bring it home to our children or to him.  There were "Letters to the Editor", calls to the School Board Office, news cameras and news hounds hovering.  It was intense!  They didn't see Catey as a precious child who wanted to go to school and learn; they saw her as a threat to life and health.

When Catey's IEP Team met to determine how to serve her needs, we considered her emotional and physical health as well as her educational needs.  It was our belief that because Catey had been been in so many different foster situations and exhibited such severe emotional and behavioral problems, serving her in the Homebound setting would be best for at least this one year.  Yes, the medical diagnosis played a role in our decision - but it was certainly not the main factor, no matter how loud the furor. 

I was privileged to be her teacher.  Yes, I really mean that it was a privilege and a joy to teach her.  She had beautiful olive skin, a mop top full of dark bouncy curls and chocolate brown eyes that sparkled with mischief.  Catey had some slight articulation deficits and pronounced all of her "r's" as "w's" which endeared her to me all the more. The biggest blessing for Catey was that Jane and Artie were Christians who truly lived what they believed.  Catey went to church at a local Assembly of God Church with them, she was learning about Jesus in Rainbow Girls, and she believed in the power of prayer.

One afternoon when I arrived for our class session, I had the most awful sinus headache.  What I really wanted to do was to go home and crawl under the covers till it went away.  When I sat down at the dining room table with Catey, she said, "What's ah mattah Miss Mawsha?  You not 'miling today."  I explained about my headache and before I could finish, she crawled on top of the table, placed her chubby little hands on my forehead and said, "Let's pway foe it."  Then she began to pray for me.  I don't remember all the things she said, but I do remember feeling the presence of the Lord surrounding us and that my headache went away immediately.  God listened to this tiny tot.

Sometimes while we worked, she would experience flashbacks from the abuse.  Like a domino effect, the flashbacks triggered rage, and rage turned into torn or thrown books and materials.  I don't remember her ever physically attacking anyone, but anything that could be raked onto the floor or ripped was subject to the rage.  She would shriek as if the very hounds of hell were about to devour her.  Whenever that would happen, Jane would come over to the table and we would stop to pray together for Catey.  One of us would hold her closely on our lap and the other would lay hands on her as we prayed.  We simply asked for God to blanket Catey with calm and peace and to replace those horrible memories with something wonderful.  God listened to our prayers too.

One afternoon as Jane went about her daily household tasks, Catey and I began our lessons at the table.  Jane was in the living area vacuuming when Catey indicated she needed to use the bathroom.  I asked if she needed any help but she said she was a big girl.  So I waited at the table and prepared our next activity.  As suddenly as thick fog rolling in from the sea, I felt the presence of the Lord so strongly that I couldn't move. The weight of His presence very tangibly held me in place and bid me to bow my head and close my eyes. Just as suddenly, Jane turned off the vacuum and went to her knees.  She felt Him too.

In the stillness of the apartment, we could hear Catey's sing-song voice.  "Aww, tha's so pwetty!  Look at all the spawkles! "  When she came into view from the hallway, we could see that Catey appeared to be holding someone's hand, but no one was there.  As she walked, she looked around as if she was seeing things we couldn't see.  She enthusiastically described her stroll and pointed out objects of interest as she walked through the streets of Heaven holding hands with her Friend.

As Catey reached the table and began climbing up into her chair, the Lord's Presence lifted but Jane and I were frozen a few moments longer - savoring His sweet Presence.  Catey, clearly ready to get back to work, said, "Okay, Miss Mawsha.  What we doin' now?"  Class resumed - but I was forever changed.

Jane and I talked later about our experience and both of us know that for those precious moments, our Catey was transported to Heaven.  We believe that something triggered a memory so horrible that her mind could not bear it.  So that memory was replaced by a walk through Heaven's streets.  God knew her need and He Provided for her. 

What makes us, as adults, think God loves us less or provides for us less than He did for Catey?  God is the same yesterday, today and tomorrow.  He's ever faithful and never changing.  His attention doesn't stray and He never sleeps.  He's always watching and caring for His Children.

Whenever I feel that God is far away or I can't figure out how to pray, I remember Catey.  I don't know how much I taught her that year because so much of our time was spent on behaviors and emotions that bubbled out of her.  But she taught me so much about God's Love and and His Provision.  He always gives us more than we could ever ask or hope for.

I will bless you with a future filled with hope - a future of success, not of suffering.  Jeremiah 29:11  Contemporary English Version

A Song of Promises

In the spring of  '98, my daughter and I moved from the only home she had known.  Apartment living was necessary following a divorce and the dissolution of our family.  We were recovering from Post Traumatic Stress Syndrome resulting from prolonged abuse.  Though funds were meager, we needed to put our "handprints" on the apartment walls.  She found a clock at Wal-Mart that she *had* to have.  Different photos of North American Birds replaced the numbers; and the clock chirped each hour with the corresponding bird's signature song. It wasn't long before we recognized the time by birdsong. 

An included pamphlet described the male and female birds, the nest, the eggs, and the hatchlings.  It also described each bird's song.  For eleven of the birds, there was only one song.  Some birds, like Whip-or-wills or Bobwhites, sang their names.  Others, like Crows, mearly squawked.  But one bird had multiple songs - the little sparrow. 

I find it amazing that God chose to bestow such a gift on a nondescript little bird.  The sparrow isn't beautiful to look at like a Cardinal, and none of its songs are the stuff of legends like a  Nightingale's.   Sparrows aren't even popular for Bird Watching, but they are precious to God.

Our first days in the apartment were dark and difficult - filled with counseling and prayer.  Eight months after her father's arrest, we both still trembled and cried out in the night from flashbacks and nightmares. She was so terrified of a tiny sprinkling rain, she would run to my bed shaking so hard that the whole bed quaked.   Through it all, we  felt God's love through the prayers and hugs of family and friends.

Gradually tears and terrors were replaced by joy and laughter.  God didn't forget us or forsake us.  He held our shattered hearts together and taught them to beat again.  He filled our lungs with breath when we didn't have the strength or will to breathe on our own.  He didn't promise our path would be easy, but He promised to go before us and make our paths straight.  He didn't promise to put back together that which had been shattered, but He promised to make all things new and restore what was lost.  He gave us new songs to sing.

My little girl is now my Prodigal Daughter.  In her quest for independence, she has turned away from God and faces harsh consequences because of her choices.  "I'm grown and I can do what I want to!" has replaced her Godsong.  My heart is shattered again and I find it difficult to sing.  But I trust God to bring us through.  I am like the sparrow.  He promises not to forget about me or to push me aside as being unimportant.  He knows my name and He will place a new song in my heart.