Today I'm taking the time to pause & step outside of the *circle* of our family's life. I find myself drawn to take the vantage point of spectator, in order to remove myself from the emotions of this journey. This is quest of comprehension, rather than needing to shut off from reality. A conscious effort to take in, recall events, and celebrate today.
My children are changing; YES, as kids do, but moreover ours are evolving profoundly; I feel a need to pause and purposely observe. The constant daily circuit of care-giving & family routines often preoccupies my mind; I often am not focused on how magnificent this journey has been & IS. I don't want to succumb to the complacency of *taking for granted*-- where we are today and the miracles beneath this roof.
From experience, we've lived this life understanding it is delicate, with full realization that nothing is certain or untouchable. Our world can and has been turned over in fractions of a second. Daily I'm in awe so often of my children and each millimeter of their movement, that when I step back to see the whole horizon, honestly it's none other than astounding. My mind finally sees the giant work God has carved out with details & purpose I never recognized in the moment. Maybe I saw a shadow of the beautiful mountain, yet He had created an entire breath-taking universe in comparison. Through everything... absolute exhaustion, unparalleled stress, calamitous illness/regression, & my absolute uncertainty of tomorrow-- He has had our plan & continues to carry us.
We've bottomed out more times than I can recall or even truly want to, yet somehow, with the help of someone(s) our family propels forward. The children are champions, even on their worst days-- my neuro-typical mortal frame pales in comparison to the will, light, & energy of their tenacious spirits. These unique people don't know how to be disappointed, lose, complain or give up-- they've never had the choice. The world as we know it does not vibrate harmoniously for their inner workings & yet the rest of the unscathed population can learn so much from even one day in their life with their challenges and triumphs. I fully believe, as parents of Autistic children, we are raising AN EPIDEMIC OF TEACHERS... beyond our complete comprehension.
Today I focused in terms of only one year ago & what this time has brought to each of my babies. I'm left with a sense of gratitude so enormous, I'm singing praises. Thank you, Lord!
A YEAR AGO...
- Bella had unexplained acute onset of bilateral hip dysplasia. She had no social interest beyond getting her most basic of needs met. She preferred to be completely exclusive, not even in the same room with any of us & chose to partake in repetitive isms like a broken record. OCD-like tendencies ruled her world. Today she is cast-free, brace-free & doing gymnastic feats with vigor. She is making eye contact, pointing to request, addressing whom she is speaking to, answering to her name, excited to see friends, engage-able, less obsessive & desires independence in being the big girl she is.
- Roo was cycling through immune crashes/viral wipe-outs/infection every 2 months, she wasn't growing or putting on weight. Her lungs were severely vulnerable, her eyes sunken with dark rings, & her body wasted compared with today. She battled rigid fears, specific phobias, and consistent separation anxiety. Now though still immune compromised, she has energy each day in bursts & large growth of physical coordination (still alternated with fatigue, but huge gains), she has outgrown her brother in height, her appetite is improving, she is aware of social nuances, working constantly to learn flexibility in this unpredictable world, she's growing significantly in confidence & even competitive, she's really starting to blossom with independence & expressing empathy actively.
- S-bear was speaking nearly entirely in scripts & playing exclusively to himself. He could not make direct eye contact with out covering his eyes afterwards, was up 2-3 times per night, & was oblivious to our social world. His auditory processing was firing on about 10-25% of our spoken language. His exclusive play was rigidly repetitive & his isms were compulsive & occupied his entire day. Today he is expressing his thoughts & feelings in real, as well as abstract details, he is seeking to engage others across environments, processing spoken language/following directions, & verbalizing thoughts nearly equal to his twin sister (just not quite so bossily). He seeks friends, talks of other people & allows us into his world of imaginary play. He is concerned about others, how they are feeling & protective of them. He prompts me with the coping scripts I once fed to him line by line.
- SJ was outwardly displaying seizures, stunted growth, repeated systemic infections, extreme withdrawal to the extent of long periods mutism daily, constant cyclic regression, and her speech was in one or two words for basic needs. She never called to me as Mommy, sought help, & her eye contact was only in accidental fleeting glances. She was content most often, but in a completely separate world from ours. She occupied herself in infinite repetition of isms. Today, she looks at us, protests & calls out to Mommy, dances & performs dipped in her own propetual sunshine vibrantly. She loves school, verbally comments on her surroundings & the people in them. She is excited by PEOPLE, acknowledges them (even those she doesn't see often) & is truly fond of her siblings. She has an opinion larger than her little body & is growing! Her speech has expanded & she has an amazing sense of humor. A true character, she is.
We have a long path ahead, yet in this moment I acknowledge God's grace & light upon these children, His hand in the angels He sends to us, & the perfection of His design in these unique little beings. The road has not been straight, nor do I expect it ever will, yet in 3 words for today: Progress, Love, Celebration. This home IS *A Place for Miracles*.
In celebration of the true essence or our: Bella, Roo, Sbear & SJ.
"What lies behind us and what lies before us are tiny matters compared to what lies within us." Ralph Waldo Emerson