The morning surf-check is one of life’s delicacies. A day of clean waves is nothing short of a gift from God.
Unfortunately, the clean lines that surfers crave do not always march to shore. When the variables – wind, swell, tides, etc. – are not aligned those clean lines become a mass of confusion, some days/hours/minutes more threatening than others.
Those messy, threatening days do not dilute the fortune of living by the sea. The stormy moments offer a richness that would be lost if every day was nothing but clean lines.
Similar to the rogue wave or sudden storm, life’s engineering does not always match the forecast.
The Mrs. and I have shared the beginning of our special needs parenting journey:
As this special needs journey continues, the richness matches the beauty of the sea – unfolding in calm breezes, clean waves, and favorable tides. And unexpected storms.
Unfortunately, as any surf forecaster will tell you, ignoring the storm does not change the foreboding path. Storms will arrive. And patterns will repeat.
There is a cycle of grief. And this cycle repeats. Despite my best intentions to change the unchangeable, I recognize this cycle because we experience the raw emotions – on repeat.
We work through this grief cycle individually and as a family. We manage this cycle as best we can, and I’d like to believe we are improving with each repetition.
We yearn towards the clean lines of acceptance, and we revel in the warm sun and cool breeze of our strong, loving family. The majority of our time is spent enjoying the amazing waves of love and happiness that ALL special needs parents know.
But we need to mindful of the forecast. We don’t know when the storms will blow through, and we don’t know how hard we will need to bear down to remain grounded, but be prepared.
It’s amazing what a well-timed hug or good cry can do.
We’re lucky to live by the sea, but we’re even luckier to be special a special needs family.
Simple isn’t easy. Life gets in the way of simple. Life is complicated.
Or perhaps we make life complicated.
Crossing into my fourth decade on this wild ride is driving me to drink determine the Tao of the Dude.
What are the rules I live by? What are my guiding principles?
If we don’t consciously determine our personal Tao (Way) than outside forces will determine the Way for us. I have let this happen far too often in my 40 years.
I need a simple framework to create a simple Tao. A Way that is easy to apply from sun up to sun down, through thick and thin.
One foundation that has caught my attention recently is the idea that life is a game. A simple mindset that adds a layer of fun to the ups and downs of the daily grind and switches the focus from survival to strategy.
Our first inclination may be to view life as a game of chess where we agonize every move to vanquish our foes. But life is much more fluid than chess, and our most formidable opponent is the person we were yesterday not an enemy across the table.
Highlights to ponder:
Life is not us vs. them; not a zero-sum game where there needs to be a loser.
Your only opponent is yourself. The real game is internal.
Life is a game against time (29,000 days) with a random stream of inputs for you to orderly configure.
Life doesn’t get harder, it just gets faster.
Master life – like Tetris – by playing with self-control at high speeds.
Play for the present moment – you can’t control the board.
No one tells you when you “win” – you determine your path and your end goal.
Making sense of this new reality is no small task. Missed expectations can be a bitch. Your vision moves one way, but reality jolts another.
Attachment to those missed expectations is a disservice. To you AND the new reality.
Disabilities don’t meet expectations. Screw expectations. Find the gifts.
Mack is not what we expected. He’s exactly what we need.
Embrace the rare. Be patient. Maintain perspective. Pay attention to NOW.
One of our methods to embrace our new reality is to talk about it. We want to draw attention to SATB2. We want to share with parents that may be on a similar path. We need to process the thoughts swirling in our heads.
In addition to firing words at the page here on DKB, we’ve also been selected to contribute to The Mighty – a great special needs blog that boasts the tag lines:
“Real People. Real Stories. We face disability, disease, and mental illness together.”
A platitude I’ve echoed in my head as I venture into uncharted territory.
My general lack of direction over the years has created ample opportunity for this self-talk.
But I’ve never qualified as an expert. Always onto the next horizon before my “10,000 hours” arrived.
Then I became a dad.
The fit was precise. Love, purpose, direction – the missing ingredients I never knew were missing.
The search for meaning (conscious or unconscious) was over. I knew my path to 10,000 hours – be the best dad I could be.
I didn’t really need to be an “expert.” I just needed passion.
When actual experts confirm that I am the expert – not by choice, but by necessity – the implications are profound.
Almost two and a half years ago, The Mrs. and I shared an update about Awesome Mack – developmental milestones had been missed and the search was on for a cause behind those missing milestones.
That search has led us down a path with developmental specialists, neurologists, geneticists, dental exams, ex-rays, MRI’s, sight tests, hearing tests, PT, OT, speech therapy, blood tests, genetic tests …and ultimately THE ANSWER.
There are commonalities among the diagnosed cases, but the sample size is small and much research is needed…assuming the medical community stays interested and funding materializes.
Nonprofit? Another topic for another time.
Common characteristics: developmental delay, speech delay, dental abnormalities, behavior abnormalities.
A common theme but a wide spectrum.
It feels cold to discuss statistics, characteristics, and cases. But that’s what experts do, and that’s the world we’ve been thrown into.
A technical mindset is a must to navigate the medical, educational and financial aspects of a lifelong march into uncharted territory. We need to work within large, established bureaucracies, and we need to fight for our needs. We need to speak their language. We need to be the expert.
But that technical mindset doesn’t change the fact that this group paving the way into uncharted territory is full of children, parents, sisters, brothers, aunts, uncles, Grandparents, and friends. People.
We’re not just cases and numbers lumped into studies. We are the experts, but we are also the emotions that lie beneath the surface. Our determination creates a suit of armor difficult to penetrate, but our love for those we fight for keeps us vulnerable.
A paradox that can be difficult to manage.
Finding the SATB2 answer has removed a small piece of hope – hope that things could all of the sudden be “normal.” Perhaps hope is overrated.
More important than hope, knowledge gives us the will to fight for what we believe in. The determination to overcome the odds. The courage to march into uncharted territory.
The strength to be the expert.
Where does Jasper Mack fall into all of this? Speechless.
Mack has a “misspelling.”
Because there are a lot of chromosomes that could be “misspelled” and there are so few cases, Mack is literally the only known case with his specific diagnosis.
MRI at 1 year showed abnormal white matter on his gray matter. MRI at 2 years showed no change. No regression – great. But why abnormal…who knows?
A few other cases show abnormal MRIs, but not all. No conclusions.
The Mack Attack is full of love. His “behavior abnormality” seems to be overly happy and friendly. Always smiling. Loves hugs.
Although he does have his breakdowns, and other experts (IE parents) have indicated that frustration seems to build with age – one theory is the lack of speech/communication aggravates…seems sensible.
Jazzy Mack has no speech. Sounds, but no words. We’ve been working on signs (and speech) for almost two years, and he is only consistent with a few. We are also in the process of being approved (add insurance to our list of expertise) for a communication device – a board with pictures for Mack to choose from.
We are told that his receptive language is higher than we may know. We believe this to be true, but with little communication, it can be hard to tell what “sinks in.”
Mackie Mack has decent gross and fine coordination, but not perfect. A lot of PT and OT has improved but not corrected this. The work continues. In the end, it could be neurological, but who knows?
The Boy eats like a champ and is almost as tall as his bro 2.5 years older, but he’s thin and does not gain weight easily.
Mack has 4-5 days of therapies per week – speech, PT, OT, and he has a full-time aide with him for three days of preschool.
Progress is being made every day. It may be slow, but it’s progress.
We may not seem like experts. We may not act like experts. But when it comes to SATB2, we are the undisputed experts. And our expertise is growing daily.
Why us? Why Mack?
Natural questions, but not worth the energy. No one has the answer, and the answer doesn’t matter.
This is our world. This is our fight. This is our Mack.
Our family is exactly the way it should be. Mack is exactly who he should be and exactly where he should be. We are stronger, better people because of Mack.
I relish the opportunity to be the expert that I need to be.
Update: Mom & Dad interview…
PS – It’s funny how life gives you what you need when you need it. Coincidence? Synchronicity?
While you wrestle with that conundrum, check out the trailer for an ABC show called Speechless. A great view of being the expert. We can relate…
I have three claims-to-fame in my 39 years on this lovely planet.
I once placed 2nd in a BMX bike race. Seven years old. My first BMX bike. A brand new birthday helmet. A big dirt track with hills and jumps. Early 80’s when BMX was super cool. And I came in 2nd…in my very first race! There were only two riders. It was also my last BMX race. But I did hang my red 2nd place ribbon on my wall.
In the 8th-grade yearbook, I was selected as “Best Dressed.” The climax of my life – and the height of my style – was only a short 25 years ago. Not too shabby.
At six, I was the youngest green belt my YMCA Karate instructor had ever encountered. I stopped shortly thereafter. A local YMCA record seemed sufficient.
There are no BMX tracks near us.
8th grade is still a long way off.
On Saturday, Little Dude captured his yellow belt in Tae Kwon Do. He’s only five.
My meaningless YMCA record has been crushed. By my prodigy.
There’s a bit of a technicality.
As “they” say, every great teacher wants their student to be better than them.
I love seeing Little Dude kicking ass and taking names. It literally warms my heart – yes, literally, as in my heart is physically warmer watching the awesomeness of my offspring.
Dad’s don’t like to be beaten. Especially by their kids. At anything.
In the generic YMCA karate of my youth, the green belt followed the white belt. In Little Dude’s TKD class, green follows yellow.
In Little Dude’s mind, Dad is still in the lead. And I’m keeping it that way.
I have the green belt (thanks Mom), and I’ll pass it down when the time is right – IE when Little Dude is 7.
Nobody ever really asked Bob Ross to do any interviews and he only gave a handful of them over the course of his life. “I never turn down requests for interviews. I’m just rarely asked”. Missed opportunity!
PBS once lost track of him until Ross called to let them know he’d moved to Orlando after the fact.
His company, Bob Ross, Inc, today is fiercely protective of their intellectual property and Bob Ross’ privacy, even in death.
Ross left school in the 9th grade to support himself as a carpenter with his father.
When he hit age 18, Ross joined the Air Force which saw him relocated from Florida to Alaska.
He disliked the job because it forced him to be “mean.”Ross left the Air Force after two decades of service, supposedly quipping that he’d never yell or raise his voice again.
Ross found inspiration after watching a show called, The Magic of Oil Painting hosted by artist, Bill Alexander.
Ross would later use an almost identical format for his show, The Joy of Painting, which greatly annoyed Alexander.
After leaving the Air Force, Ross returned to Florida in the early 1980s intent on seeking out Bill Alexander to learn the finer points of wet-on-wet painting. Alexander, who was an art teacher in his spare time, happily taught Ross everything he knew about painting, blissfully unaware that he was training his soon to be arch-nemesis.
With money tight, Ross made the bizarre decision to have his hair permed, exchanging the military crew cut he’d sported for two decades for his now iconic afro. Ross’ reasoning was that if he permed his hair, he’d save money in the long run because he’d no longer need to pay to have his hair trimmed once a week. Ross kept the ‘fro for the rest of his life, though grew to dislike it in his later years.
Exactly how Ross went from “perming his hair to save five dollars” to “being on TV” isn’t clear.
When the time came to film the first episode of The Joy of Painting, Ross made the conscious decision to speak as though he were talking to a singular viewer, giving the illusion that he was giving a private lesson.
Ross almost exclusively wore jeans and a casual shirt throughout the show’s run, a look he felt would be “current” regardless of how many years later an individual episode was aired.
Ross was never actually paid for appearing in the show and he never sold a single painting featured on it. The show was instead used as a vehicle to promote Ross’ teaching business, interest in which exploded after the show first aired. Over time, the business expanded to include Bob Ross branded brushes, paint, supplies, etc., all making Ross a millionaire.
As for his paintings, with the exception of the ones he sold to tourists during his time in Alaska, Ross gave away virtually all of them made during the show’s 403 episode run. As for the thousands of other paintings Ross made during his life, many of them were similarly given away or, when Ross became a household name, given to various charitable causes to be auctioned off.
Interested in hanging an original Bob Ross in your humble abode? Good luck.
Bob may have been charitable with his paintings, but the general public sure isn’t. Here a screen shot of the top two B. Ross paintings on Ebay – yes, that’s $20K+!!!
Just that you do the right thing. The rest doesn’t matter.
Cold or warm.
Tired or well-rested.
Despised or honored.
Dying … or busy with other assignments.Because dying, too, is one of our assignments in life. There as well: “to do what needs doing.”
But “never shot a bullet in anger.” Served just behind the front lines providing ammunition.
Four children, 10 grandchildren, 12 great-grandchildren.
Didn’t swear, smoke or drink.
The only drink he ever ordered was when he proposed to his lovely bride – Grandma, at Rockefeller Center. He ordered a whiskey sour, and “if you look there now, the full glass is still sitting there.”
Pop was an awesome dude. Cheerful. Kind. Always there with a joke and a smile. The most steadfast and consistent person I’ve ever met. If he said it, you know you could count on it.
He expected a lot out of you. But he didn’t make demands. He led with his actions, and you knew to follow suit.
He would say things like…
If it’s worth doing, it’s worth doing right.
The Marines have landed and the situation is well at hand.
The difficult we do immediately. The impossible takes a little longer.
Before giving a reading at the funeral (verse below), I said…
Pop is an amazing person. I’m honored to be up here. Gram and Pop are the example I live by every day.
Love you Gram
With the passing of Gram and Pop, I’m left with the realization that I am now responsible for carrying on that example. Their legacy.
A bit cliché, but real.
It’s easy for examples to fade away. It’s difficult to choose the right examples. And even more difficult to follow that example.
When the end is in the future, examples remain examples. Ideals. When the end arrives, those ideals must be carried on. Or fade fast.
I’ve chosen the best possible example, and now it’s my turn to lead in the same way.
Always a smile to share.
Never a bad word for anyone.
A fighter for what I believe, but fight in the most loving way.
No complaints, angry faces, or mean-spirited actions.
Family is always the top priority, but love is all inclusive.
I am who I am, on so many levels, because of Gram and Pop’s love. I am the husband, father, and person that I am because of the lessons they passed on to me.
The brilliance of it all is Gram and Pop never once “taught” me a lesson. They passed on everything I need to know to live a good life and be a good person by just being themselves.
I am their legacy.
I wrote an essay for my college application about my Grandfather. I closed with…
I hope to make my Grandfather as proud of me as I am of him.
20 years later, this is more important than ever.
The ideals that Gram and Pop lived by are in my hands. Their lessons live on through my actions.
An immediate jolt to responsibility.
I am a better person because Pop was in my life. The best example I’ve ever met.
Love you Pop. You will be missed. But your legacy is safe with me.
1 Corinthians 13
Love is patient; love is kind; love is not envious or boastful or arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice in wrongdoing, but rejoices in the truth. It bears all things, believes all things, hopes all things, endures all things. Love never ends…And now faith, hope, and love abide, these three; and the greatest of these is love.