A note from John:
It’s my pleasure to share with you the story of my friend, Madhu Gammon. Madhu and her husband Keith attend Stone Hill Church in Princeton, NJ, where I served as a pastor for eight years. Madhu and Keith’s story centers around how God stretched their faith and joy in the midst of the difficulties of their son Ajit’s medical issues.
In God’s providence, Angel and I are, right now, in the home state of Madhu and Keith: Tamil Nadu, India.
I pray that you are blessed by Madhu’s humble faith and irrepressible joy as I have been.
Setting out with a bag and an umbrella is perfect for a walk in the park. We finally got there. It was an unexpected wait to get through the checkpoints. The Waiting Room was abuzz with swiftly changing scenes as we moved from the corridor to the elevator. The sounds of trolleys with their squeaky wheels rolling by were not particularly musical. It was the easiest thing to misunderstand the unrealistic questionnaire in the dim lit room, the questions like a frisbee whizzed all around me. Frankly speaking, what does it feel like to be faced with an unexpected diagnosis, ‘the baby has an increase in head circumference’?
We had started a journey into the world of unknowns! What is normal after all? “Normal is an illusion. What is normal to the spider is chaos to the fly.” The world of disability is a deep dark pit of foggy impressions until it comes to you and you are still in a fog.
It is the desire to appear as if you can do everything; even if you don’t really fit the role. We joked about this a lot growing up in and around Purswalkam and Vepery in Chennai, India when we came to the age of crossing the threshold of puberty. I was expected to wear the pavadai-arai-thavani (half-sari). My friends and I often talked and giggled about this and those dreaded feeling of a growing girl that one day someone would come to check you out: how you walked, and talked, and who could be the next suitor in line for you. So much in life is really unknown.
How does one move from this stage to the next unless the hand of God made the next move? It also happens that some brave little warriors are found fighting the enemy in some strange unexpected places.
Several years have passed since out son, Ajit, was born. Thankfully, we were not prepared during the waiting early trimesters for any abnormalities whatsoever, for me or for baby. A tentative diagnosis then available at the hospital was an uncommon one. Of course that should not be hard to deal with – an abnormal Congenital Brain Cyst – that could continue to grow, cause pressure on the brain and be on the cause for seizures. On the fifth day after birth, he started to twitch and was diagnosed also to have Epilepsy.
At one month Ajit needed to have a Cysto-Peritoneal Shunt surgically placed in position by the Neurosurgeon at Christian Medical College and Hospital Vellore, India, Dr. Jacob Abraham. His wisdom and timely intervention gave Ajit the first miracle: Ajit improved. The time allotted in a day have us just enough to be busy about the usual tasks of caring for an infant, enjoying what he could do. We were challenged in own hopes for continuing our careers, with juggling jobs, learning to pray more. The reality was that the shunt, which is a silastic tube, could get blocked. As baby grows it would need extension or even replacement with more surgery, hence our worries.
I had come through several days of reflections after his birth. We were just beginning to adjust, when Ajit’s shunt blocked. I had conversations that started with, ‘why, what, which, who, where’, and back again to the unanswered why? I am not sure if these were conversations with myself or with my God, as I was raised knowing His name.
It seemed that this Great I Am was also very determined to show His capacity to make me feel loved. My husband, the quiet gently genteel man, knew how well to carry the shield of faith and protect me from the fiery darts of the enemy’s niggling pokes to disarm me.
We did not find the usual euphoria of a baby’s arrival. Instead there was a certain guardedness to share the experience with others of a child with these challenges. Until we ourselves made the reception easier and adapted to find ways to introduce him to the village, we often found ourselves stared at. When Ajit was barely a month old, we were in the third class compartment traveling from Karpadi to Chennai. Our co-passengers looked at our month old baby strangely, and then stared at us. I imagined and could almost see their thoughts, “Oh my, you poor things…or what is that!” But once in a way we also heard, ‘”God bless you.” And so it was a somewhat wild sharing time! I smiled to myself, “This is my Father’s world. I rest me in the thought….” Then opened my eyes with wild surprise, “Surely the Presence of the Lord is in this place.”
Interruptions became a part of our routine in a normal day; can this be easily explained? Perhaps not! Friends and family soon discovered the humor and anxieties in our times of our any and every day. Each one of us grew up, growing up with Ajit. Although he went through his early milestones remarkably well on time, the challenges were different: Feeding, walking, talking, bath time or worship, all were interrupted and punctuated by commas, semicolons, colons, exclamations, and quotation marks. Our communication was in at least three languages, Malayalam, Tamil, English and when necessary a nice spice word from Hindi.
Ajit was not so handicapped or mentally retarded that he could not tell us what he felt. It was not dismal to have a person with different needs as part of our family. It became natural to say, “Lord please help Aju come out of this seizure, to help us understand what he needs at this time, we pray that it will not have any harmful effect on him.” It was a relief to hear him join also by saying, “Amen” as he came out of it.
Music interrupts and brings happy pleasure into Ajit’s life. Adding rhythm to his rocking movements was good for exercise, worship and therapy. We sang songs throughout the day, as many as he could hear, which started before his sister Priya would leave for school, with “Good morning Jesus, what a lovely day you made….what a way to start a brand new day.” Priya doted on him. Her mind and heart revolved around him to an extent that she felt her own anxieties irreverently surface when he was ill. We knew that God was reassuring her when she chose to sing with strong conviction, “From a distance, God is watching us.”6
Change Brings Growth
We needed faith so tiny and small as a mustard seed to be cherished, valued and nurtured. It was to allow the plant to grow into a tree and build our home around the tree. To become part of the forest, we also had to allow ourselves change in order to allow the sapling to be transplanted and to move from our parent institution CMC Vellore where we worked as staff for a decade after post-graduate studies. After a year’s sabbatical in Kerala, Ajit still needed more help. The next move was to Chennai to work in different hospitals that also gave us exposure to the city-village.
So it was back to the city, which raised us – the school, church and neighbors of different faiths who walked and talked with us in acts of mercy through faith, hope and charity. We became part of a committed church with golden opportunities citywide for growing friendships. Realistically, it was mind-boggling. To enlarge on that, the joy of Christ became part of the bone, marrow, and sinews for us as a family.
Music became more a part of our lives with Keith and Priya participating in choirs of the church and with different groups. Ajit and I learned the scores through being the listeners and critics. Sharing groups, praying groups, family groups, neighbor groups, and impromptu gatherings anywhere – across the front gate, under trees, cafes, homes – sharing shopping bags, and three wheeler auto-rickshaws! We often celebrated fellowship over large four-foot long dosais (rice crepes) or with thayir – (curd-) vadais and samosas with tomato sauce, or biriyani after church. We served: distributing buttermilk to traffic police and road workers, being part of running medical clinics for the fisher fold on Marina Beach with Acts of Mercy of Vineyard Ministries, and in Valathi Outreach Ministries along with Ms. Betty Shelton to name a few. The joy of service was a platform that allowed others to help Ajit and that he too could be a part of a ministry team.
The problem with Ajit’s difficulty with seizures, and adjustment with seizure medications, did not allow him normal or daily school attendance. The problems only grew bigger. Special schools were either too far out to commute to or were geared specifically for other disability categories. Then, by happenstance, we had an offer from a bright and eager social worker – teacher/journalist/counselor – who became the teacher that Ajit needed. She worked on a one-on-one basis. Indu arrived daily and generously engaged Ajit in activities to improve his eye-hand coordination. His interaction with her was a tremendous boost for us to know that he could be at home with others, if they were willing for the adventure. Her family became ours too. Of a different background of faith and understanding, she was widely receptive and collaborative of Ajit’s ways to get rid of seizures. Knowing Ajit’s comfort with music, she would at times encourage him to sing “I cast all my cares upon Him, I lay all of my burdens down at His feet, and anytime I don’t know what to do, I will cast all my cares upon Him.”7 We thanked and praised God for this soothing experience and grew in confidence for “in His Presence there is fullness of joy” (Psalms 16:11).
It is remarkable how we really did not have much time to sit and ponder “If God is for us, who can stand against us?” (Romans 8:31). Our God is with us, Immanuel! The great I AM was in the transforming business. “Why do you stand looking upward? Who are you looking for? Did you not know?”
We hosted two friends in our home in India. One of them offered Priya the idea of graduate education in Special Education in the USA. We were amazed that Priya was handpicked and chosen because of her interest and passion to help children with special needs and she was able to acquire a PhD in Education/Special Ed in Loch Haven University, Pennsylvania.
The mysterious plans of God were in progress. Matthew Poehner became Priya’s husband and they now have two children, Bella and Leo, who also are active members of the family, school, college community, church, and neighborhood. Our friends are surprised that the children are able to understand that Ajit’s difficulties make him act differently. Although often surprised at some of his disjointed speech, his sudden bursts into song, his frequent demands for “biscuit,” which they run to get him knowing they can have one too. They care and pray daily for his healing – for seizures to go away.
One day while at church, Bella, who was then four, had left the sanctuary to drink water. When she came back and saw Ajit shuffling in the pews, she whispered in my direction, “Is Macha (uncle) having a seizure?” Leo, now four-years old, also has many scientific questions and advice, “How do the capsules help Macha’s seizure disorder?”
Bella and Leo are the best therapists. They do not even have to try hard, but manage to get Ajit acclimatized to loud play and non-stop chatter, all of which at times are still challenging for him. The truth is that they are seriously aware of his difficulty and empathize with him beyond their level of understanding. If children and adults with special needs are only left to their needy circles, society is being deprived of a mutual learning and beneficial experience.
Why? This Unexpected Gift
The sun danced on the grass, the hare ran on, the tortoise stopped
The humming bird and the busy bees
Stayed in tune,
It was a symphony!
Hey! Beauty you brought music home to me.
Smug and dandy covering ground
Bright and eager feasting around
Would you have guessed, had never stopped to pause
Raise their head or know the frenzy they had caused.
Determination in their stride
Gardeners’’ eyes grin opened wide
Violas, pansies, myrtle clumps, water pipes
In sun and shade between the stripes.
Painter sky and meadow lakes
Colored rain and rainbow fills
Dew on flower and birds that sing
Goodness, mercy drops another hue,
Foggy dreams around the pit,
The arm in-and foot in brace.
The headgear shifting out of place.
Is this the soldier we thought so fit?
The mile ahead are not for me,
Do you want to hear the pain?
When knees go nuts with a crick and crack
Like whiplash on my neck and back?
Spent pain, the jolts and stomachaches
Others, will not even understand
The stench of selfish storage bins,
Hunger, war, passions high like burnt out steak.
Why did you want a share of my history,
If it is but just a long winding tale?
Why would this of any interest be?
But yea and amen! The Giver tests our destiny.
The sun danced on the grass, the hare ran on, the tortoise stopped,
The humming bird and the busy bees
Stayed in tune.
It was a symphony!
Hey! Beauty you brought music home to me.