Adjusting To Breathing Under Water

When I was a little girl, I had a diary and a Minnie Mouse doll. Both kept my secrets. My diary allowed me to pen poetic drama to paper. I felt I could finally talk without actually “talking.” Minnie, on the other hand, gave me an opportunity for my voice to literally be heard. She obviously did not speak or have any emotions to react to anything I would share, but my sanity counted on my voice and on her presence, even though silence was the ultimate response. Eventually, I lost Minnie. My voice hid behind a sealed mouth, and I was then left with my diary. That lasted for some years but then faded as I grew older. I decided to close shop on writing all together and felt the best way to handle the toss and turns of life is to keep thoughts and emotions bound for a never release date. Walls were built. It was cold but safer. No one knew, therefore no one could judge. All this started to change when autism came to visit and I realized that this wasn’t an ordinary drop by. Autism was here to stay and suddenly without asking, loneliness stepped in to be a close confidant. My husband worked a lot and traveled extensively. Raising 2 boys at the time, adding autism in the mix did not feel like the best of times. He traveled to exotic places where the sun beamed across your face, serenading you with paradise. Even the arctic air in some cities brought chills of felicity and memorable scenery to behold. He has gone distances where I would be honored just to catch a glance. I am immensely joyed that his life has been introduced to the sights, sounds & tastes of various cultures. The exposure is priceless and for the many who know him, his purpose relies on it. When I met my husband, he traveled. So this was not breaking news. At the same time, I can’t negate the aloneness I feel when he is gone and with my day to day, sometimes what I feel even when he is present. My view of the world normally goes no further than the 4 corners of our home. If you incorporate school, the grocery store, gas station, library and church, you have seen life quickly displayed. I don’t want to sound like my life has only had crossroads and no favorable days to savor. That is so not true. But for me, routine has become an active member of our journey. Rarely any carefree or fly by the seat of your pants moments. Nothing scheduled away from the typical either, and at the end of the day, when I’ve looked in the mirror, I see nothing more than the 4 walls that surround me on a daily basis. Like clockwork my day begins at 5:30 a.m. and ends by midnight or a tad after. Praying. Breakfast. Dressed. School drop-offs. Errands. School pick-ups. Dinner. Homework. Baths. Snacks. Bedtime. End of the day clean-up. Prepare lunches. DRAINED.  The weekends are no better. They tend to disappear before me. Saturdays and Sundays are so programmed that I just roll with the flow. One day resembles the next and where the weekend has left me, Monday morning shows up ready with a hustle as if there were no days off to begin with. Life appears more interesting than alluring. I’m amazed how it will brazenly hand you something so unexpected and everything in an instant flip flops to something that you’re definitely unskilled, unschooled & unrehearsed for. All remaining is vulnerability. Your goals and plans become distant dreams and the “unexpected” becomes reality. I never would have factored in autism. I never saw loneliness coming. I didn’t think my college degree would collect dust from no potential employers ever knowing its value. I didn’t count on ARD meetings and trying to wrap my brain around the meanings of IEP, IDEA, ADA, FAPE and ESY. Meltdowns were jaw dropping. Bill money became therapy money. When that ran dry, immediately you became the licensed doctor, therapist and sometimes teacher. Insurance coverage was unreal to fathom because there was none. Non-trained & often unpleasant teachers, unqualified paraprofessionals, protective principals of faculty who have no interest & no expectations of the child, unconcerned district personnel who are blinded by the pretty buildings that house them and school boards who deliver a slap on the wrist for misconduct — honestly, I thought this only existed in nightmares or at least a horror film. Son being sick took on a whole new connotation, as well, when he slept in puke and wasn’t cognizant to come wake me. And the potty-training are chapters in a book that will disturb all your senses, especially on an empty stomach. I didn’t expect down the road no rest, no rest, no rest. I didn’t anticipate constant fears, misguided detours & bad choices. . . . .and frankly, this doesn’t even tap the exterior and may not debut the interior at all. But I discovered with every challenge, with every obstacle and with every heartache comes lessons learned and over time, voices heard. I was tired of the cloud of silence raining on my parade. I needed an outlet to express me. I needed loneliness to be replaced. I don’t have my diary anymore. I’ve composed several journals in hopes of helping me cope, grow & survive under much water. . .and prayerfully, as I swim, every stroke of maturity, know-how and wisdom will move toward and aid lonely hearts that feel wounded, helpless & lost too.
 
 
Thanks for listening,
 
Portia
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