It is said “To every thing there is a season, and a time to every purpose under the heaven”(Ecclesiastes 3:1 KJV). I turn the pages and read through what happens in every seasons mentioned, then realize there are just two seasons missing and their activities not mentioned: A season of sanity and a season of madness. In the latter season, you bolt through it like a whirlwind and never look back lest you stop and drop dead. But what if this season seems to last every day of your life?
As I write this, a hymn song keeps playing in my head, just as it always has: Nearer, my God. to thee. It throws me back to moments in my life when I neared God; on my knees, bowed head, closed eyes and clasped hands. Every time an opportunity presented itself and with my eyes wide open, I neared Him: On foot, standing, walking, jogging, squatting; In the deafening public service vehicles, bathrooms, toilets, pit latrines, kitchen, living room, gymnasium, football pitch, running track, lecture halls and during sleepless nights in my bed. I missed the seasons of sanity.
I feel like a wanderer as the sun goes down every evening. As darkness comes over me, I rest my head on the pillow like a stone, with my eyes wide open: Yet in my dreams I am nearer to God. Words from the hymn made so much sense in my life!
How have I survived through these years, waking up every morning to a day greyed by my daughter’s condition? I throw back my thoughts and trace my journey… more than ten years have lapsed by and I still remember the events like yesterday, when the seasons of madness began.
What could be the possible opposite of ‘Son of a gun?’… ‘ Woman of a rose’ perhaps? I think so… Just call me Woar (acronym) in short ; it sounds a perfect description of me. I come to think of it; a certain Son of a gun pulled the trigger and shot my petals, one of them bloomed into a beautiful bud and as a result; a bouncing baby girl I named Pendo. This little bud turned into a little mystery I’m still trying to unravel today. I must admit I still find myself staring at her in wonder as I try to enter into her world. To say the least, Autism is perplexing!
I remember the feeling of numbness when the Doctor at Kenyatta National Hospital (KNH) broke the news to me. We (Pendo and I) had just left KNH,after close to three months of admission at the hospital; swapping between the ICU and the children’s ward (story for another day). Her pretty face was often covered with some Oxygen masks as a result of contracting acute bronco pneumonia (now I know these words!).
By the time I was walking out of that hospital ward; all sorts of tests had been run on her young body: blood cultures, heart something, kidney something,brain something and bone marrow something. I didn’t care; all I wanted was walking out of that door with a breathing baby. I had witnessed too many deaths at the children’s ward and seen too many corpses whisked on the corridors of the hospital every 4 am in the morning. How appropriate that we would queue for drugs at this eerie hour and watch the trolleys with bodies pushed past us! The list kept growing by the day and the angel of death didn’t seem to be in a hurry to leave. He kept roaming around and taking more souls. I sank to my knees and begged the Life Giver: I was not going to walk out of KNH with empty baby shawls in my arms: My little Pendo was not going to be one of the victims.
I remember literally asking God to stop being a sadist. Why would He give me a healthy baby, then squash it before my very eyes with some infection? I must say we (God and I) became very close friends since then because He let me walk out with her in my arms. She was alive, but too exhausted to kick.Her muscles were wasted from the months of bed rest and lack of activities. She could not sit upright or stand by herself; she just lay in my arms and stared blankly.
One of the pediatricians looked at her and jokingly said, “ you are so lucky mama Pendo, you walk out of here after so long with your little cabbage!”. I had only smiled in response. The illness had reduced my Pendo into a little cabbage. We were thus booked for regular clinics,to check the progress of her healing. This was going to be my first appointment with the specialist.
“I’m sorry Woar, but this little girl has autism.” The Doctor said, taking the stethoscope from his ears and adjusting it around his shoulders. I stared into his eyes in confusion and mixed emotions “ Aut..what!?” I asked,wide eyed.
“Autism” he responded, looking at me diagnostically and asking “Where’s her mother? I need to advise her about the condition.”
“Shoot, I am her mother” I responded boldly,a wave of numbness washing over my body. I was holding my heart in my sleeves. What the heavens was this?
“Huh? You are so young, how are you…”he must have seen some missile propellers in my eyes because he stopped, stepped back and took a deep breath. I glared at him, hands akimbo; this is often my defense mechanism to look bigger and bolder. I was expecting the worst:This was going to be terrifying and I needed to take it in like a woman-hands akimbo.
“ It is a lifetime condition with no cure. It is still very complicated to understand and Scientists are still guessing what causes it. Pendo may never speak, feed herself, walk herself to the toilet, play with other kids or attend regular school. You will need a lot of support from…blah blah blah…” He kept going. My mind went into auto-pilot mode. I don’t remember the rest of the stuff he said. I wasn’t listening. My ears had numbed and my heart beat hard in my chest “Autism!?, Forever!? What the heck!?”
I looked at my frail baby, picked her up in her shawls and held her tightly to myself. This was probably a mis-diagnosis. It was a nightmare, except that it was taking place in broad daylight with my eyes wide open. I blinked severally to confirm if I was awake. It just didn’t make sense. The doctor’s lips kept moving as he sat at his desk and wrote something. It must have been lot’s of things he was saying and writing .I could see him turn the pages and write some more. ‘That must be a lifetime diagnosis!’ I thought to myself as I absentmindedly patted Pendo’s back. She remained quiet with a haunted look in her eyes.
"So God has added some spices to my little cabbage" I said in my little scared voice. The Doctor must have heard me because he looked up and smiled. "You will be fine with therapy." he said reassuringly.
'Me or Pendo?' I wondered to myself.
I walked out of the Doctor’s room like a zombie. The Son of a gun was sitting on the bench outside; he had a phobia for anything and everything in hospitals; from Doctors, to patients, to the building itself. He stood up and walked towards us, “What did the doctor’s say?” he asked, stretching his arms to take the baby.
“I don’t know. Go and ask him!” I snapped, feeling totally frustrated and turning away so he wouldn't touch Pendo. A sudden flare of anger overwhelmed me“And don’t follow me to the house!” I shouted.
He didn’t. He stood still looking astonished, until I disappeared. Son of a gun! He was supposed to follow me!
I don’t recall how I managed to board the right KBS bus to town, crisscross through the crazy streets of Nairobi and catch the right vehicle home. I don’t recall hearing the deafening music in the no.45 Thika road matatu’s I sat in or the time we spent stuck in traffic. I recall digging into my wallet for fare but don't know how much I gave the tout and if there was some change. I wasn’t thinking. A lifetime condition with no cure!? . It would take a lifetime to understand!
I recall lying on my bed on my back with my baby lying on my chest. I didn’t want to let go of her. I wrapped my arms around her and let go of the choking lump in my throat. Staring at the ceiling, I let my tears flow, soaking my pillow with the pain. It was never going to be fine. It was going to be a long season of autism: A season of madness.
I closed my eyes and said, “Dear God, please send me a list of all the spices you decided to add in my little cabbage.”I must have fallen asleep because the next time I opened my eyes, it was my younger sister Queen, (she’s an angel) asking me to get up and have some supper. I wasn’t hungry: My mind was full.
The sun had gone down: It was dark outside; darker in my soul. I closed my eyes again, I needed a miracle. Lyrics to Verse 4 of the hymn began to play in my mind:...
Then with my waking thoughts
Bright with thy praise,
Out of my stony griefs
Bethel I'll raise;
So by my woes to be
Nearer, my God, to thee,
Nearer, my God, to thee,
Nearer to thee!
...(based on a real life experience)... to be continued