A Birthday Letter to My Dearest Father

Loss and reflection

Hello Dad, it's me Steph. Today is your birthday, February 23, 2016. You've been gone for several years now. I can't believe that you haven't been part of my life for nearly 6 years. I don't think you knew where this was going. Alzheimers happened to be the malady that eventually claimed such a vibrant spirit. And a funny, sparkling character. You would have not known that your brilliance would disappear slowly as a candle flickers down. The light that was you, Dad, truly is missed. I am certain that you are amazed that life gave you such an awful finish. And so you should be, because you were my Dad. Completely present and always ready to protect and nurture me. 

 You were so positive, Dad. Anything that was possible was believable if I saw it through your eyes. I never felt as if I was falling short in my confusing life from awkward, shy nerdy teenager to naive adult daughter. Setting it all into a crystal clear perspective allowed me to see a reflection of someone capable. Even if my situations screamed incapable. You were how I found some sure footing. Those mistakes in judgement were slippery obstacles. And I reached up for something to hold onto. I looked up to you. You came to the edge, met me there, held my hand, and spoke to me. And filled my heart's longing for understanding. I could leave our talks without reservation that any choice I made from that moment on was informed. 

 Dad, you were the type who always wanted to give yourself away. It brought you as much pleasure to see others content than it did your personal joy. Working 13 hour days in that convenience store when I was a little girl to a high school student. It had to be for the family. I was too young to see it as a sacrifice, and perhaps I was too self centered. Kids want what they want. It is so easy to miss the lessons in the life experience. Especially when the silliest things are motivational. Trust me Dad, most of the nonsense I focused on I would have sacrificed in a heartbeat had I known I was taking advantage of my Dad's outpouring of support and love.

Your brand of devotion was stellar. You loved that role, a nurturing father. Not hard edged  unless I was completely off my mark. Gone totally batty. (And I'm sure I can recall some outer space times.)  Amazingly, I never felt any rejection from you. I could hear occasional disappointment in your tone. But I knew that was a time for some introspective me speak. If I could just see a mirror image of what you felt I could have been. Somehow I think you would have just drawn me exactly as I appeared that moment. She would have looked and behaved as I did. Because Dad, you didn't say things to aim for my pain or heartbreak. You built up the tiny pieces of me and stitched these rags together when I was fragile. This meant that I was loved "as is" and broken or fresh from being tossed in the dirt. You believed that shining me up with a pep talk and a story of where your life once took you could fortify my wounded mind. 

As a young adult woman, most of my early 20s were what I think of as a train wreck. Dad, I know it took a great deal of strength to see your youngest child so needy. I knew answers to my deepest fears lie in your brilliant mind. And you donated and gave to me. I was your child and student in how to live more smartly. The love was in copious amounts. If your love was water to drink, at times in my existence, I was the old tin can with dents and puncture holes. It kept spilling, all the nourishment for my spirit. So you brought extra pitchers of love. How did you know just what to give, how frequently, and when? I knew you were brilliant. 

 You know, people were expecting this to happen. Alzheimers diagnosis is a slow life sentence without parole.  I held out hope that it all was a bad dream. Somehow you'd be that cat with nine lives. Every setback from other health concerns was so easy for you to recover from. And better than the last. You wore those battle scars with pride. But this one, you know Dad, with having a child with Autism, I thought that this was picking on my guys. Why my guys? I questioned the absurdity of potentially losing the man who gave me life, who supported my days from a precocious child reading newspapers at age 2 to a woman with 2 kids at age 30. That wouldn't be possible. And you would never allow it to happen. 

Dad, I know you wanted to live for me. For Mom. For the grandchildren. And everyone who loved you. Those effervescent daily bursts of joy would give anyone a reason to hang on. And how you held on. I remember times when I needed to change your underwear or assist you with feeding. I know its so indignant to have your daughter changing you, but I feel proud to have been part of your needs. I would do it again if it were at all possible. And how many times did you ever ask for help? It was always opposite. Special people deserve complete understanding and someone to run to their aid. Dad, there is no such word as burden when it comes to being completely devoted. Your honor is worth more than a few moments of my life. 

When you left this world in April of 2010, you broke my heart. It shattered into so many pieces. Maybe those were pieces of me and you. The memories we didn't know we were making. That long goodbye that began with Alzheimers. And I knew, although I never told you, that you were my best friend. Maybe you already sensed that I admired your tenacity and longed to someday be worthy of your admiration and pride. To perhaps follow your path to a road of success without fear. Knowing your door was always unlocked to talk gave me courage. Where would my courage come from at age 34 without you? And beyond that, how would I stand strong in who I was without your love? There were a few days before you left that I knew you were going. Before a performance on my saxophone at a community concert, I received a call that you were experiencing seizures. I said to myself, "my cheerleader is gone". You would slip away a day later in the middle of the night. 

Dad, it seems like forever or yesterday. Neither reality sits well with me. I needed to write you on your special day to say I haven't forgotten. Incredible is what you were.  You'd be so surprised at how much I'm like you. And it happened pretty much overnight, in my opinion. Much after you passed.  You are celebrated. I speak of you often. My reality includes loving and losing a father to a very tragic neurological disorder. But there's joy in our memories. And the love you left behind for all your loved ones. The joy of being your daughter was phenomenal. I know you thought you'd live forever. Not on this Earth. But all you give gets recycled back through kindness of those that were impacted by the sheer gift of you. So your birthday gift is how your memory remains a light in the dark for me. Your life mattered. You left a legacy. How amazing is that? 

I am writing now, Dad. I decided to take my nerdy tendencies and put them to timely use. Today, this writing happens online. Don't worry Dad, being online isn't dangerous. Actually people take portable smartphones around with them and get on the internet while walking, eating, sometimes falling asleep. It is blogging, or being a blogger. I make this universe up as it pops into my head. So yes, I and it are a bit all over the place. Happily in disarray, but a complete work. You'd be proud, I think...? And maybe I will publish a book of poetry.

Well Dad, your birthday is coming to an end. I don't want to let you get back to the world that you are one with nowadays. But I know you're my angel making sure I have a safe place to fall. Laughter will be heard throughout the heavens as you joke with all the friends and family you reconnected with. And I wait for a day I will see your face again. Maybe someday Alzheimers will be a distant memory. 

Happy Birthday Dad! 

Love,

Your daughter

Stephanie

For Frank Marley Sr. my best friend who happened to be my Dad

14 years brought us here...birthday thoughts

 

Why the site was "dark" for a month...(let me explain)

I haven't written for my blog for some time. Actually an entire month. For me, a muse needs to exist to express my deepest thoughts. My thoughts tuck themselves within me. Then they swirl around, reminding me that I don't want to contain them. My thoughts are my lifeline to my moments, the input of those that truly make a difference.  There is no way to falsify those feelings, lacquered with intense honesty. They beg me to put them into focus. In that moment, my life becomes transparent enough to share with the world. The connection becomes electrified, with nowhere to go except out into the the universe. I hope someone will share my words and  find pieces to take with them. 

A birthday for reflection...

 My little boy...well not so little guy celebrated his 14th year of life. A moment for reflection on where our journey in this special needs world brought us. Certainly he's growing up strong and handsomely.  He's 5'7, and at times he looks down at me with a smile.  He is probably astonished at what he's achieved so quickly. Well, I am 5'2", so his looking downward is expected.  Everything he does amazes me. Not just the way he learns information like a sponge.  He just mesmerizes me with all the great perspectives he offers. And the way he loves with all his heart. He takes every beautiful moment in.  Holds the details of each kind gesture. Every sincere display of humanity's ability to smile for someone you didn't know needed that. 

 In my quirkiness, I always make a huge celebration of birthdays. Even to its  midnight arrival on the clock. The eve of  your birthday may as well be the countdown to your national holiday. At least I would surely vote for that holiday. So as we watched the IPad tick down the minutes to 12:00 am, I thought of the miracle of the time my son has been in my world. That road that was traveled now seemingly a lifetime ago. I will always remember the C Section that almost killed me. That was his vehicle into this life. I had a miracle of seeing another sunrise and holding my baby close. And never wishing to let go of those moments.

Let the words be spoken...

When I was preparing for the countdown to February 21st with my Tyler, my heart filled with thoughts that I wasn't sure I had expressed to him openly,. I believe in giving my children hugs. I constantly hug him to reinforce the connection and bond with him is immeasurable and unbreakable. It seems that with kids with disabilities, we as parents feel like each day we have opened our hearts and poured every ounce of energy into parenting. The physicality of our existence in increased by double. We are often alienated and reduced to lives of being misunderstood by family, strangers, and friends. So sometimes we only hope our children are happy somewhere between the always a moving piece type of world we exist in. 

The unspoken language of special needs parenting is borne of love. Allowing the words to ring that your love inspires is powerful.  My son's birthday was an excellent moment for sharing just what having him in my world does for me. How his needing me allows my heart to stretch in new directions. How his challenges and courage to face these without any fear of the unknown or new continue to make me so proud of him. How life has changed for us through exploring, reading, and observing. More is in reach because of his willingness to find joy where it exists. And how much he loves me is so reassuring. Parents do get confused about how their actions are read. Is it for what you wish it to be or exactly for face value. Sometime the longer you've worked, the less you're appreciated. For those just receiving a new diagnosis, the road to teenager is lengthy. But the child that you give your all to will remember those sleepless nights even when you cannot anymore.

 A Birthday Message to my son...

Happy birthday, Tyler. You are a wonderful son. Your kindness and love shows in how you treat everyone and everything around you. You've made my world better just by being in it. I am so lucky that you are who you are. Autism doesn't change that. It never limits what you are capable of. You are so compassionate, loving, smart, and genuine. I am fortunate to have you here. I will be here for you for as long as I am allowed to stay. I would hope until I am a very old woman... I am so proud of you! Love, Mom. 

After having my heart to heart soul connection conversation with Tyler, his eyes glistened. He isn't the biggest on smiles or toothy grins. However, on his Birthday Eve through the early first minutes of Feb 21st, the most beautiful smile extended from one crinkled corner to the other. He heard something in this message that resonated with his soul. His joy, pride,  and inner contentment glowed.  His response humbled me. Somehow my son always breaks things down to their essential elements. A simple action says everything without need for verbal support. Universal language of smiles. Happiness lives here. 

On his 14th birthday, I had a new lesson to learn through my Autistic son. My son needed me to know that he takes pride in pleasing others. That he is devoted to being a great person. He is fine with the quirks that others possess. He loves making someone proud. Ironically, I would never ever not be proud of how beautifully he has grown into this amazing young gentleman. There would never come a day when his gentle spirit alone wouldn't have lifted my goals for myself. The way he cheerfully and patiently handles each day of life with Autism can bring me to tears. He  doesn't ever complain about how adults (or kids)may unintentionally separate themselves from him. He doesn't look for the shortfall in people, but the best in them. He is a Pisces; compassion is often shown to others rather than given back. On a day like a birthday, all the appreciation just flows back to him. Everything he gives me comes full circle today. 

 I was overjoyed to watch him fully embrace the "birthday boy" title and all its awesome benefits. This year he blew out every candle on his Minions cake all by himself.  And showed me a few good dance moves. This past decade was filled with all the makings of a great biopic. Autism diagnosis at 14 months. And all the truths that come with the honesty of the special needs lifestyle. Balancing the nuances became a learned skill for him, too. We learned each other, just like typical kids and parents do.  Our Autism journey is one where the child is learning as we learn how to best enhance this life. So we learn, they learn. Tyler knows me as well as anyone could. He has a comfort with me that no one else has. And I am blessed beyond compare for all our bumps and bruises in society over this 14 years. It assisted us in finding our own lane to travel through and find our voices on the way. His voice is a 14 year old voice. It sounds deeper than it used to, heavy pitched. But I hear my baby boy's voice in the distance. I sometimes look at him and see a photo of the ultrasound image. The attachment is real.  14 years of adapting to the changing beat of our life's rhythm leaves you breathless. But its the best kind of exhaustion. 

Tyler, thank you for the lessons I had to learn. Today's mom is someone I love being. Whoever I was before you was made whole after you. Your sister and stepfather love you. Your grandparents, including the grandfather you lost adore you. We had a village, son. We were lucky beyond measure...We will move forward through the 14th year knowing that we can live our very best lives and find courage in our unity. Your goals are within reach and we'll learn how together. I'll show you all I can. 

 

Minions Cake Is Whimsical and Too Cute for Words. 

Minions Cake Is Whimsical and Too Cute for Words. 

Live Life in Color

Stephanie-

The Vibrant Hueman



The Happy Smiley Emoji According to Me...

Ever since that ubiquitous yellow circle with drawn on eyes and upward curved mouth told us to "have a nice day", the symbol is synonymous with joy. This universal positive sign transcends any language barriers that separate our world, acknowledging that we like it. Or even that we like you. Being liked nowadays is as special as clicking a button on a post. However, this powerful smiley simply pleases and nods a resounding "YES". I get you. We get you. Isn't it nice to have a mutual understanding that you're not alone, but embraced? Temporary, like a tasty morsel of chocolate candy. But just as impactful.

My Tyler was diagnosed with Autism at age 14 months. The reality of this disorder is that he is often separated from the rest of the kids in school settings. Also social integration is more forced than a natural skill.  He doesn't participate in everything that typical people may take for granted. He's never thrown a pass. He hasn't traveled with his school choir or band to perform. He doesn't hang out with his friends after school to talk about the latest video game or the prettiest girl at junior high. Instead, he shares his love for educational videos or streaming Netflix. He is fulfilled, yet pushed out of simple pleasures that bring people together. 

Not too many days ago, we celebrated an awesome event with our family, my husband's birthday. Tyler sat beside his adult sister, a bright, talented young lady who embraces social media. We noshed on pizzas from this amazing local chain. (This restaurant has become a fast favorite for my husband, so it was the ideal choice.) His sister couldn't resist the cell phone, texting and checking her timeline. I am guessing that there were some likes, because the happy emoji guy showed up. What happened next is true magic.

Tyler was extremely intrigued by having his sister around, as she attends college away. He was so busy watching her moves that he could hardly consume his perfectly cheesy Italian Sausage slice. There was something magical happening on the cell screen; the smiley face that my son was familiar with somehow also loves being online. This smile is universal, so he knows it well. When he saw the emoji, a huge grin coursed over his face. His narrow downward eyes opened with a light of joy. How and why is this little emoji on a text message so potent? So effective and all encompassing? 

After the meal was over and we'd finished the 2 hour commute back to our abode, Tyler took a few moments to address his thoughts. The standout of the night wasn't the Pizza Shack's crazy good pizza pies in BBQ Chicken. (Although I promise I have never tasted such a decadent slice in my life...) That magic was in the emoji, how he told me that he thought of his classmates when he saw that cherubic little symbol smiling. His voice was strong and he seemed confident in his skin. For a moment, I know he was touching the world. His sister would have never known that her smiley face emoji left an imprint on his heart. Opened a curious mind and fed a hunger for acceptance. 

A smiley emoji  empowered my son that night. It said you aren't alone, but a part of this circle.  No separation from the power of being liked or loved. A face that says, I get you. That your feelings are just like everyone else's. You're my friend and can make a friend that will smile back at you without judgement. Why should someone with special needs live an existence that separates instead of drawing him nearer to self awareness. Completeness. Being joyful in your place in the universe. Knowing that when you see a smile, you've arrived for one moment. Breathe in these tiny small victories and take all of the happy smileys into your world. They are surely as long lasting as cotton candy, but the memories preserve joy for a lifetime.

My Tyler's very first text will surely feature a circular fellow (or lady)  in yellow who never has a bad day. Remember that differences aren't negative but a learning experience. Leave more smiley faces. 

Live your life in color.

Stephanie

 

 

Two gifts please... a son's compassionate Christmas wish

Christmas was only a week away. On a typical quiet holiday break morning, my son bounds downstairs. He somehow knew I wanted him to join me in my daily Good Morning America ritual. I cannot miss a morning of Robin Roberts' brand of journalism. She is just such a compassionate anchor and never overstates the message, but seeks ways to impact her world while leaving her stamp. To diverge, Tyler has Autism and truly does value the human expression of compassion. I would consider him one of the most compassionate persons I have ever met.  

He climbed into bed and put his head into the crook of my arm. At this very moment a segment about Christmas gifts (a much belabored pop culture moment) in the proportion that some saw as excessive flashed on the screen. I consider myself a pop culture savant. I had to hear the mother's side of this coin. So I waited for the commercials to run and chatted it up with Tyler.

I asked my son how many gifts did he think were delivered by Santa to that house. He gave his best estimate and innocently replied "100". I then asked him how many gifts did he want for Christmas this year. "2". Only two? I knew just what two things those would be. DVD's in an educational series.

At times, I am utterly astonished by my child. He somehow places all my life cruxes into perfect clarity. For certain, his priorities even in this season are unwavering. He intuitively knows that there is a higher meaning to all of this. An Autism disorder places social and cognitive limits, but seemingly honesty transcends any limitations. This is honesty in not taking but giving. Never more than the essentials. He wanted connection in the intangibles over the mystery content in boxes and bags...

The lesson I learned from him was that the gift isn't in that gorgeous designed paper, but the humanity that surrounds us.  Sure thing, Tyler's  two gifts are on Santa's list. He gave me life goals during that conversation. Maybe my list should be on redux mode, too. 

May the joy that this season brings offer your families understanding and peace.

Living life in color

Stephanie 

The Vibrant Hueman begins her colorful journey...12/17/15

The beginning of any journey has to be the hardest part. The uncertainty of the direction sometimes prevents the very best in us from breaking through. I think of my life as a daily journey, an arrival to a new level of consciousness. I allow new experiences to take me into some direction. I don't necessarily feel I will understand why I am exposed, or opened to whatever happens. 

This blog is a mechanism for me to share more of what makes me human (hence my not so inconspicuous take on the word). The colors in my character have been shaped by all the joys, sorrows, small steps, and awesome life events, mundane to absolutely fab. My heart and mind share that colorful imprint. So as many consider how to share holiday season with those we love, I decided to give myself a gift, a voice to share these pertinent moments and musings.  Maybe some posts are sanctity in places of adept confusion. Others are lifestyle trends and observations. And some are me being your BBF just stating the facts according to me. 

I truly hope that this blog gives someone a sense of shared common ground with other human beings. A combination of Leo magnetism and a take charge approach to my life places me in a good spot to become this completely open person.  Placing it all, even the scary or emotionally intense parts of your world in full view is what makes some step back several feet. It's much easier to cover flaws rather than embracing them. Here beauty topics will have a home with the daily challenges of special needs parenting. The Vibrant Hueman is not one taste or flavor, but that variety pack with something inside for all. 

Live your life in full color!

Stephanie