I’ve faced many days of pain in my almost 43 years of living, but nothing compares to the “gut wrenching”…”blow to the knees”…”wondering where God is” – diagnosis of autism, my son received years ago. To see Callie now and even me for that matter, one would think things couldn’t have possibly been that bad. To hear my child script upon hours would cause disbelief in the beginning of his story where the nonexistence of speech ruled. Reading, writing, socializing…and any progress at all would question my legitimacy as his mother because when you see him, most would likely view the now as also the “back then”…when in actuality, what you see now is growth. Oh how I wish there was a time machine that revealed where simply breathing lacked life’s meaning….where submerging in tears of guilt was like a song on instant replay….where the nevers, the cant’s, the wont’s and the what ifs sounded the alarm of failure — all would be considered an untruth at the sight of the present Callie. But there was a road to travel before arriving to progress. And even today, our lanterns are still lit, our thermos are filled and the arrow on our compass is directing us forward to the teenage years and beyond. It’s just the tools to success wasn’t given to us early on and neither was it easily achieved. Life sent us in the dark and we had to feel around for the first step. Nothing felt familiar. A simple touch could be uncomfortable one day and piercing pain the next. All our other senses were paralyzed by both fear and the unknown. How are we to navigate through something so magnified by each and every turn if we don’t have a grasp of at least an inkling of the subject matter? How can hope be visible and known when it peeps its head in through the night, if the night represents everything we don’t understand? With eyes opened wide, I don’t understand what. With eyes closed tight, I don’t understand why. What does drifting in his own world mean when he’s right beside me in the world I thought we both were in? Why has order & routine become predominant 365 days of the year without skipping a beat? Why does certain sights & sounds in the air have the ability to cause a sensory frenzy on my arm or a meltdown that leaves me lost for words in trying to articulate what just took place? What does IEP, BIP, IDEA, SSI, FAPE, and LRE mean, and why have these abbreviations been given out like there’s no need for explanation? These questions and thousands more have circulated around my head since the diagnosis. Of course, answers don’t always come when we want, and the pace in which they arrive do not seemingly block more questions and concerns from coming. It doesn’t help that you’re blinded by the length of day, the lack of improvement, and the slim expectation of a future. For me, all this created a hole. This was a lightless dwelling that I crawled in every night…sometimes during the day. It became a safety net of life going nowhere….a place where dreams fade. Each second of delay, each minute of wordless communication, each hour of frustration, each day of exhaustion and each week of hopelessness turned into months compounded with screaming matches in my head of where was this light at the end of the tunnel? Where were the stars that brightened up the evening? Where was the sun in the midst of the rain? But all the cliches in the world representing a brighter day could not somehow knock reality’s door down. The years caused the hole to deepened and enlarge until gradually, nothing was over my head but the heaviness of my son’s cries and needs. I couldn’t hear anything else. I couldn’t see anything else. And quite frankly, there was no one around who understood the dark dreary clouds above to reach me. And optimistic thinking? Unattainable.
But I came from warriors. My parents have a story that needs to be illustrated in book form or captured on film. Breast cancer alone is just one of the many battles they’ve faced, however if it was the only one, my Mom’s testimony of perseverance would blow you away. My grandparents’ names should have been in lights. Their fight for life is beyond inspirational. It’s a cookbook of endurance with all their best dishes and the ingredients that made the journey unforgettable. They died not wanting fame. They just wanted their legacy to be a place you turn to for survival when your own knowledge lacks ability to keep walking. They all had walls that took a hit with bandages, limp and bruise, but even at death, their story stands tall. My wall has cracks, scratches, fractures, gashes, cuts, band-aids, gauze pads and casts but I didn’t realize the depth of my heritage strength until one particular moment in time when I was totally at my wits end. Callie wasn’t talking…maybe one word every few days or weeks. He didn’t even script at the time. But when his brother hurt himself, he recited a whole line from Calliou and incorporated his brother’s name in the sentence. I, sitting in a puddle of pee and poop, paused from cleaning Callie up. My wall that had begun tumbling down fast, suddenly, came to a halt. In an instant I was reminded of hope. Each night, I had crawled into my hole, coming out only to care for my son….not fully being aware that each time I came out, hope and the backbone from the ones before me was grabbing hold to experience, and all three were embracing my heart with vitality and fortitude. So although, the reflection in the mirror showed a weak wall, clueless on everything pertaining to my son’s autism, how to reach him and how to steer through everything else that had been placed in my hands for safe keeping — this weak wall that was on the verge of plummeting is now recognizing her strengths. My know-hows are still all over the place. My days are still long. My nights are sometimes crushed to no end. Questions of today and tomorrow swirl in my head from time to time and fighting for what appears to be a never-ending battle for acceptance and respect currently remains. The school system is a issue all by itself and teaching independence when dependence has been your way of life is definitely challenging for us both. But my wall wasn’t built to fall down and no matter the ups or downs, the sun or rain, regress or progress — throwing in the towel is not an option. Besides, if my son’s wall is built strong of will, who am I to express dissatisfaction with how life plays its cards OR how hope occasionally whispers to the point of almost no sound even though you would much prefer a lion’s roar? In any case, I’m determined to aid the hurts & challenges on both walls….anticipating hope, everything learned and the drive for more to undergird me to rise to the occasion every time.
Thanks for listening,