Ode to Roman

    Last year, I was collaborating on a book project that gave the perspectives on raising a child with autism from real families.  How neat is this concept?! This is a book about a community of various, very different, relatable and unique stories.  These stories aren't stereotypical, nor is it pushed to commercialize.  
      Just before it went to print, I decided to withdraw Roman's story. The publishers required our stories to be stripped of our child's name, all names of people that were part of the story, the claim as the author, and the right to ownership when speaking of the story.  I won't go into detail because it's long winded but in the end, I decided that my son's story would remain real and personal for others if we can openly share it. I'm grateful that this is mine to publish. Enjoy. ~Melany
**Written in 2016**

The Essential Question: What is the greatest lesson learned from being a parent to a child with autism and what advice can be given to parents with newly diagnosed children?

Roman is a seven year old boy who has a multi-faceted view of his one life with autism.  

Roman smiles. He plays, he hugs, and he is intelligent.  He is kind.  Roman speaks, with words you may or may not comprehend. He listens.  He feels and will explode with anger and break down in sobs of sadness.  He dwells in his thoughts but he shares his mind.  Roman was three when diagnosed with autism and four when he was diagnosed with leukemia.  The boy will laugh at broken facts and illogical reasoning.  More often, he participates.  He advocates.  His mature soul travels the world, seeking different cultures.  He will ask politely and demand a ‘thank you’.  He knows no stranger and has not an ounce of hate in his bones.  All that I have described are but a few characteristics of my son.  Those who stare closely at his colorful details may judge him unfairly but they haven’t considered him in his entirety.  The specifics are like thousands of simple haphazard paint strokes but together it cohesively makes up the beautiful work of art, known as Roman.  His spirit will affect you. 

Roman’s greatest gift is love because it is the one language he speaks to us all with.  When you think of Roman, you automatically think love.  It may not be through perfectly articulated sentences or emotionally written composition, but in his tenderly guileless way, he illuminates hearts.  At the age of seven, Roman is the source of true insight on unconditional love. 

Victoria, his younger sister, is the first person he has shown the strongest affinity for.  It’s interesting because Roman was three when his sister was born.  It was earlier that same year his pediatric doctor had handed us his autism diagnosis and warned us about his bleak future, a life lacking empathy.  During my pregnancy, Roman was fond of the idea of becoming a big brother and even selected his future sister’s name, nicknaming her Baby Toria.  However, from previous encounters with friend’s babies, it was clear that Roman hated the sound of crying.  My husband and I were concerned about the day Victoria came home from the hospital and how Roman would react to actually having a baby sister to keep.  I was so worried about the major transition for him, I had myself discharged within 24 hours, immediately after labor just to get home before Christmas so it wouldn’t ruin his favorite holiday.  My worries were unfounded because Roman fell immediately in love with her.  He would sit for a long time staring wide-eyed in amazement.  I have a picture of him looking down and observing her sleeping.  The best part of the picture is that he is watching with both hands covering his ears, in case she would let out a cry.  I always chuckle at the image but it’s wonderful because it captured a glimpse of a boy who will work through fears to show he cares. 

I think loving his sister really allowed him to explore further emotions, especially all the years she tested his patience.  When Victoria was an infant and would get cranky when tired, we put her down to nap in her bassinet, soon she would be fast asleep.  Roman often disappeared into his bedroom to play, whenever Victoria was in crying mode.  We weren’t leaving him alone with her often because he was too young to know she was breakable.  However, one day, as I stood on the back porch to get some air, while Victoria remained in her bassinet, I noticed that Roman had made his way from his room to her.  I didn’t immediately come in but watched through the glass door to see what he would do.  He hadn’t noticed that I was observing a few feet away.  What I witnessed was Roman’s first attempt at sharing, which was momentous!  My son tiptoed to her and stared down.  I could see his mouth repeatedly moving, saying, ‘Baby Toria’ in a quietly endearing way.  I hadn’t noticed that he had something in his hand but he placed it quickly in her bassinet.  After a few minutes, he left and I came in to inspect what he left behind.  Still asleep, Victoria was tightly swaddled in the same position and beside her shoulder lay a tiny wooden train.  That train brought such happiness to my soul.  Roman’s small gift of comfort to his sister proved to me early on that he would redefine the autism parameters set for him by naysayers. These moments were but a few occurrences that Roman showed me the importance of remembering the calm and unobtrusive kind of love.

Other times, like exasperating situations that test my parenting skills, he has given me opportunity to fulfill his need to be loved and to remember it is me that he requires it from the most. The best example of this is my personal torture of the birthday song.

Since the age of two, Roman would cry whenever someone sang the birthday song.  He would throw a fit; holding his ears, screaming uncontrollably, as angry tears rolled down his cheeks.  My husband and I felt helpless.  Roman, our usually smiling boy who walked around in circles would quickly lose all cheer and have a meltdown.  He was inconsolable.  We didn’t really know how to handle this uncontrollable reaction, so first we tried withdrawal. Roman was taken away whenever the cake candles were being lit.  Eventually, I fell into guilty mode because how easily it could be misconstrued for shame, hiding Roman as if his presence was undesirable to other children.  Like some other parents of autism children, we pushed through and naively believed that Roman would someday outgrow his discomfort with increased exposure.  This decision didn’t help.

The birthday song revealed two truths. First, I had for a brief period of time, failed my son.  I failed him by not being the parent he needed me to be.  My decisions essentially bared my buried, unspoken disappointment of unfulfilled dreams for him, while simultaneously rejecting the validity of his pain. Second, I learned that Roman would never ‘outgrow’ autism and being better educated in the many aspects of the disability, specifically sensory processing disorder, would prepare me to communicate to my son most appropriately.  Essentially, he needed me to love him. I later realized that to automatically respond in that most basic way was not instinctual and it took time to not make things so complicated.  I promise that showing your child that he or she is the greatest priority will always be the best path over any other line of thought.  

As parents, letting go of those dreamed up futures you’ve outlined for your child before the diagnosis will be hard.  Yet, we must release those expectations, if those beliefs don’t help him or her today.  People have asked me what I would think Roman would become as an adult and what would I like to see him accomplish.  They are usually surprised that I don’t have anything, not a single iota of an idea, to offer.  I often smile and say “Roman says he would like to be a pizza delivery man because he really likes pizza and breadsticks.  I told him that it would be difficult to live on that income so he said that he could also become a video game designer and that way he could stay and take care of me.”

I’m not worried about Roman’s future.  In fact, I don’t think about it.  My son has just completed three years of chemotherapy.  He has not lived a single day of childhood living a ‘normal life’ but he has surpassed every limitations ever given to him.  My perspective may be a bit different given our situation but Roman is alive and well.  He is beyond fine. He is thriving.  

I’ll be honest; parenting a child with both diagnosis is hard.  It’s challenging for people to imagine what life with autism is like.  It’s a different kind of struggle for people to wrap their mind around a child with cancer. And with both, it’s too demanding for people to think very positively.  I’ve seen more head shake in pitying sympathy than I can count.   However it’s not my hardship.  Has it been more difficult to love my son? No.  He is the easiest person to love and it’s natural for him to love you before you can introduce yourself.  I don’t doubt that he will succeed in everything he sets out to do because he has taught us to love him to his success.

“Accept the unique life you have and love others for each individual” is the insight I have gleaned from my son Roman Stawnyczyj.  No matter what labels he’s been given or associated with; no matter the circumstances apportioned to him since birth; no matter how ambiguous the future; with all-encompassing capacity, Roman lives, freely loving the existence that he owns.  I wish every parent to view their own child this way because every child should know they are perfect in their parents love today.

Melany Stawnyczyj

Roman age 8 (March 30, 2017)

Z-Mom-Bie Falling

Life lesson: When the bottom drops, the terror is not in the falling but in the unending break. 

There is no rest for my soul!  I feel like  my mind and emotions have been wandering nowhere… forever… and I’m now functionless.  I have become what my dad dubbed as a “z-mom-bie”; a zombie mommy.  I’ve even begun looking the role, as family/friends watch me fall apart. 

I hate being this way; I prefer happiness and all things that make me want to smile all the way down from my toes. Yet, I am not going to lie—I’m heart sick.  I am sick of crying; sick of stress; sick of watching loved ones suffer; sick of complaining; sick of ‘sucking it up’; sick of trying so hard to just live my life! Gee…am I depressing? Yah... I know…I’m sick of that too.

But wouldn’t you feel as crappy as I feel too—if you found out your father was dying and couldn’t travel half the world away to say goodbye in person because of fear to leave your son when he is fighting pediatric cancer? And just when you finally come to terms of inadequately saying goodbye in a written letter and accepting your brother’s good will to be the ambassador for both, you find out that—THAT dreadful plan may not be an option anymore because a typhoon that has devastated the Philippine islands…most majorly the island in which your father is too sickly to evacuate…and now you have no news as to his and the rest of your family’s safety and well-being!!!!

I bet you would feel just like me… Not only do I feel confused, sad, lost, alone, desperate, and angry, I also feel guilty and regretful.  I feel regret in not being more of the daughter of the best father in the world and guilt for having a life that is so incomparable to the one I would have lived if I never left my third-world country.  Ever since I was separated from my father, I vowed that I would come back and take care of him; I had taken the responsibility and burden to better myself through US opportunities, ultimately providing my family relief in every way that I couldn’t if I stayed.  Unfortunately, by the time I was able to give help, my father’s health was deeply negatively impacted.  Marko and I have sent money the past 12 years to help my father and brothers buy food, make repairs on their fishing boat, and address proper health care with medicine and specialty care.  Still…it wasn’t enough.  I could only send very little and he had compounding health problems that I could not heal.  Don’t get me wrong, my Tatay appreciated and took the help that I knew made him feel ashamed to be helped by his daughter.  It was and is the least I could do for the man that gave me this life…that I very much love: the family that I have created with my husband and my children.

And now…I scan the news and online websites fearful that I would glimpse at a vision of my father taken away by a typhoon.  I absorb the photographs of a destroyed coastal homes of Leyte and its non-operating airport of Tacloban city. With no power and no forms of communication available and working, I am frightened into silence and despair.  It will be a week before my brother and mother fly to Manila and I hope that we hear good news from my father—or at the very least, the airport is again in use… My greatest fear is that my brother will have to spend his time there in-search of our father…eventually, unable to have the moment to say goodbye. 

There can only be an empty finality if our father departs without either me or my brother by his side and the comfort of love that he deserves. The feeling of unrest will remain forever.

 I pray that God will be merciful.  Until then, I will be waiting for some good news to break my fall.

**oh and on a freaky side note…Roman has been taking the framed picture of my father, me, and brothers off the piano and studying it as he sits it on top of his dinner placemat, his designated area to sit and eat.  For the past few weeks, he has done this, before all the bad news has occurred. There was no interest before his sudden particular interest and I wonder if Roman has some sort of sixth sense...

I have included the picture.
salamat sa iyo kaibigan

My Tatay

Tatay Berto…my Tatay has been the one constant in my life that I placed on a pedestal to measure everyone, including myself, against. Tatay is the dearest to my heart, even though I have been far apart from him since I left the Philippines at a young age.  Roberto Martin, my father, showed me how to give and receive unconditional love. That was the greatest gift that shaped me to who I am.

I am—because I remember…

…a banyan tree.  There was a banyan tree on a land that my family owned.  I remember happiness.  I remember my father and me in happiness.  I remember dogs.  I remember playing and laughing.  I remember the sun and the shade from the tree.  I remember falling asleep against and under the banyan tree.  I remember thinking my father was the banyan tree; my protector and provider of belonging.

…rain and thunderstorms.  I can close my eyes and still hear the hard rain pattering against the tin roof tops of the houses I lived in.  There were numerous occasions that I sat upon a window seat and watched the rain pour, behind wooden slatted windows.  At the age of 3, I remember feeling caged in and trapped by the rain.  At the same time, I remember feeling like the rain outside the glassless window seat felt like freedom.  Knowing nothing but the secluded life that I lived, I did not know what freedom meant.  My mom gave birth to my brother in the house and what I remember most of the situation was my pregnant mom getting carried away into another room, me sitting on the window nook, and the rain. That window belonged to my father’s family.  The cry of a baby being born pierced the air and I continued to sit by the window.  Most times, whenever it rains, I remember running and dancing in the rain…it reminds me of freedom.

…carpentry.  My Tatay, before he succumbed to a series of illnesses, was an expert carpenter.  Whenever his job didn’t have him making furniture, he was making these beautiful wooden flowers, detailed with petals, stems, and leaves. I had always thought he would make these flowers forever and gave away to my favorite teachers my own pieces.  Now, I have none and my father is too ill to ever work with wood again.  I remember visiting Tatay at work.  I was young, but I was inquisitive so I remember asking about the pipes throughout the warehouse and questioned their purpose.  With a white mask on his face, he explained that they were to vacuum the sawdust and wood particles in the room.  I remembered listening earnestly to hear the pipes working and my father shaking his head and saying that they have been broken for some time.  I remember hearing my father cough and remembered when he became too ill to work there.  At a later age, he had to switch careers.  I mourned the art that my father had to give up and the life he had to endure…I wish to take back all the wooden flowers that really belonged to me.

…puking. Yep, I ate so much fruit that I loved until I made myself sick.  .  There are times that I have flashbacks of fruit that can only grow in the Philippines and I torture myself with the memory of its uniqueness.  Yumm! Oddly, I also remember my father handing me a handkerchief to wipe the vomit off my lips.  Yep, I threw up on a ride of public transportation and then the handkerchief.  Actually, I remember many Filipinos with embroidered handkerchiefs and was shocked to find that disposable tissues and napkins really didn’t exist there.

…houses that danced.  Earthquakes and volcanic eruptions occur often.  The sound structures built in the Philippines provided me with entertainment.  In my fearful experiences of the earth shaking, I found humor in the swaying homes that family members tried to cover my eyes from.

…my father’s family, near the sea.  We lived in the country by the water and being kept sheltered from the city life…and the sun.  I remember looking beyond the farm fields and the endless sea, knowing that my Tatay was working in the city somewhere to bring back money that would feed and clothe me.  Every year, the trodden paths on the fields were lined with palms and religious reenactments for Easter.  Men, without shirts, would beat themselves as they marched and mimicked the punishments given to the Lord Jesus.  I also remember hardcore Catholics that volunteered themselves for the crucifix. Religion and passion seemed to be rooted in all Filipinos.

…transportation on wheeled railroad handcar.  The handcar was made of some sort of wood and a man pumped the crank to move it along the tracks.  I remember my father and I traveling on this handcar into the mountains to visit my brother, who stayed with my mother’s uncle’s family.  For the longest time, my brother didn’t know he had a sister.  I don’t know why I was with my Tatay and my mom took my brother but it forever made me love my father and strained the relationship with my mother. I discovered automobiles, boats, and planes when I traveled to the States. It was magic to me.

…Tagalog as my first language.  I think everyone can remember when their parents were teaching them how to write or read and to sing the alphabet.  I remember this for my language and I loved making my Tatay proud.  I do not speak my native tongue now, even though I can still understand most conversations.  Like my language, I have sort have faded from the original me.

…the heartbreak of separation.  My father never said goodbye to me.  The day I left the Philippines, I had waited and waited for my father to come and get me or say goodbye.  I was told that he would not be coming.  As a child, who absolutely saw her father as her world, I didn’t believe anyone.  I desperately waited for my goodbye but I walked unto the plane in silence.  I felt betrayal but I couldn’t blame him.  I loved him too much.  I later learned that my father could not handle saying goodbye to me and that giving me up was the hardest for him to do.  My father channeled his heartache as best as he could.  Tragically, he would visit my cousin, who looked very much like me, and was born in the same month.   

Now...I understand by what he felt. 

How can I say goodbye—after I say I love you? 

So I won’t.  

I will say goodbye when he is gone and all I want him to remember is my words of love.

 All I want to remember are the memories of his love.

Happy 12th Wedding Anniversary Baby~

12 Random Reasons as to Why/How 12 Years of Marriage Has Strengthened Me

Take note that I will not call my husband by his name, I will refer to him as Hubby, Husband, Bubby (nickname of baby and hubby mixed), and Baby.

Wow. Twelve...12...YEARS of marriage to my wonderful husband and I'm so much better for it.  How? Let me count the ways..how about twelve ways?

1. I bawl my eyes out over the health of another child with cancer and without question he takes my hand and immediately prays for that child. 
2. We may argue a lot about the little things but we are on the same page for all the big things in life.  Of course, when we first married, everything became a big thing.  Our youth was burdened with insecurities that we overcame through experience.  I am extremely thankful that we have nothing to argue over, except for the things that don't really matter!
3. Unless either one of state otherwise, we automatically assume that any plan made includes each other...and sometimes the kids ;-)  Being each other's half to a whole allows us to truly function.  I don't know how couples could make separate plans first and then talk to each other about when they can make time for one another or to even see each other at all.  When making plans, Bubby and I assume that we are doing something together and adjust to plans for time that we are doing something separate.  That's just how we work.  I like being around my husband and for some reason he likes being around me. 
4. My husband knows the details of countless fictional books he has never read.  I read at least a book a day and whether he likes it or not he listens to Melany's Cliff Notes a night. (As a fair exchange, I get to hear about history, politics, and hunting, whether I like it or not.)
5. Taking compliments is not my strong suit.  Coincidentally, Bubby's daily praises and endearments for me is a natural urgency he has been doing since he met me.  I learn to take what he dishes out.
6. We share our strengths to improve our individual weaknesses. For example, he shows me any important paperwork that he has written for my review and final approval.  It makes me feel respected and revered for my mind. From my hubby, I come to rely on his strength of emotional stability.  When I suffer from a bout of depression, I cannot trust my judgment but I trust his.
7. Laughter... We love to laugh--at each other, at jokes, at situations, at life.  Oh yeah~we actually get excited watching previews to movies that are potentially funny.  Comedy clubs, Comedy Central, Jimmy Fallon or Jay Leno clips on YouTube, funnies on Pinterest...we are all over that! Above all, I especially enjoy the moments when no one understands why we are laughing and we get into such hysterical fits.
8. With freshly brewed coffee, he makes me a cup-of-joe, just the way I like it.  That should be reason enough as to why our marriage is strong. HAHA. At the risk of sounding like an alcoholic, I will admit that I originally wanted to state that I like that he pours me a glass of red wine whenever I want. Yep. My ideal man serves me coffee and wine. Don't judge!
9. He talks about me to his friends.  The biggest compliment to me, that I willingly take, is that he includes me in his discussions even when I am not there.  I don't even ever have to wonder to know that he speaks with pride and with a good heart.  It's a great feeling to have his friends and coworkers respect me because he is a husband that respects me.
10. We keep each other informed throughout the day.  I know that this activity is annoying or not possible for many couples but we do it without thought.  Texting or calling is not work for us, it's good routine.  I had learned the importance of supporting my husband through positive words and he learned how I valued time and assurance of his safety.  We smile at the loving reminder of my original statement years ago, "The day I do not care where you are or when you come home, is the day that you should worry about our marriage."
11. He encourages and attempts to fulfill the smallest and silliest of dreams.  I had once wished to dance amongst the clouds.  Thanks to him, he smiled and laughed as I danced wildly at the highest point of a volcano on Hawaii's Big Island. This coming February, we will see Les Miserables in Raleigh! Yes, my mighty hunter will join me in watching one of my favorite musicals!
12. Last but not least--- I don't know how it is possible, yet he often sincerely tells me and fills my love tank when he says "I love you more with every moment." It's the same for me.

Happy Anniversary Baby~

and thank you Angels for supporting and believing us as a couple.

A Dream-- by Melany Stawnyczyj

I dream

        I dream of you and me

Me...

In joy

In fear

In conflict

Of the kind of mother I may not be;

In my soul,

Deep within my heart,

There exist...

My dreams for You

In life

In love

The happiness of

Your start.

I dream.

        I dream of you in me.

You...

Within unconscious time

Within the breathless beats

Within untouched areas of grey

Subsisting...

In the dwellers world's unseen

I dream.

        I dream of you with me.

But then...

The haze of uncertainty bleed

Uninvited

Uncovered

Bluntly revealed;

Devoid of compassion

And revoltingly unreal.

Helpless and

In silence

You slip...

In distance

And in peace.

I dream.

        I dream of you for me.

Abyss...

By means of anguish and

Ruthless ache;

Lost

Severed

Bereaved

In vast darkness

My spirit weeps

Endlessly...

For you and me.

The Sparrow

“Whenever I am tempted, whenever clouds arise, when songs give place to sighing, when hope within me dies, I draw closer to Him; from care He sets me free; His eye is on the sparrow, and I know he watches me…” Civilla Martin

First, its pure coincidence that my titles thus far have been lyrical in nature.

Second, I’m actually going to address the sparrow profile image, which will ultimately address a personal revelation.  Here goes…

I’m going to get a sparrow tattoo.  A sparrow tattoo is associated with freedom, undying love and commitment to a single person. For me, all three meanings apply.  Spiritually, a sparrow means unforgotten worth and serves as an escort of souls from our world to heaven.

Deep huh? I’ve been pretty dark and deep lately.

I lost the baby.

Just typing that hurts me immensely. If you think that revealing that information on here is crude…I don’t care.  What I’m going through and the hardships of my life…its mine to bear and I’m doing what I can to help me move forward. 

::sigh::

Talking aloud is not an option for me. At least, not now.  I couldn't even make the calls to my parents. I informed one of my brothers and I can’t do it again. This post..yeah..the best I can do.

To answer the basic questions that have formed in your mind:

·         He was approximately 4 months.

·         No, the baby wasn’t identified as a boy; it was not identified as a girl either.  To me, the baby was a boy. 

·         They do not know the cause of death. They don’t usually know, whenever this occurs.

·         Yes, I had to have the baby surgically removed.

·         I found out when I came in for a routine maternity OB appointment and the ultrasound could not pick up the baby’s heartbeat.

Of all the fearful sounds in the world, I never thought that the absent sound of his heartbeat would cause me the most terror.

Needless to say, I mourned and I closed myself up.  I wish I didn't because I think women should discuss miscarriages and uncontrolled abortions.  Thinking what I should do, didn't move me to actually do what I should do.  Does that make sense? In nutshell, I was senseless.  I couldn't understand why everything I feared happened to me.  Actually…to be honest to myself…I couldn't accept this tragedy as mine when I felt that I had my fair share of horrible incidents.  Yet, it did happen and even though I thought I couldn't survive it…I am surviving it. Just don’t ask me to talk about it….yet.  

On here, discuss away! You may be able to help me walk further down my journey and I would appreciate that alot. 

I thank my family and few friends that know and have extended their love and prayers.

So the sparrow…

Reminds me of the baby, who has my undying love…

and who was carried away by the sparrow to heaven, into permanent freedom.

~Melany

*Thanks for reading Care Bears 

Some say I'm a dreamer...

but I'm not the only one... Seriously, I'm not a John Lennon fan. I think the song is okay, just not me. AND that's why I selected it to be my title. Confused? Yeah...read on :-)

Some know me as Roman the Warrior’s mommy. 

I’m proud of that title.  In a few years, I will probably be known as Victoria the Terror’s mommy.

To most Marines’, I’m simply Stitch’s wife or Mrs.Stitch. 

This gets old real fast, especially if you become a good friend of my husband! This trophy wife has a first name!

Occasionally, people confuse me for Super Mommy.

Although I appreciate the complement, I honestly refuse to see the resemblance.

Certain friends have come up with endearing labels.

Since I’m also certain type of friend, I love sharing, swapping, and being all the endearing labels. (Imagine me snickering).

I do answer to approximately 25% of the nicknames my husband has come up with.  I ignore the rest because…well… I don’t want to encourage him.  I’m not a fan of sugary sweet crap.  No offense to those that do.

Should I ramble on? Nah. I know you’re wondering ‘what’s the point of this rant?!’

The point---

Hello

I’m Melany.

I created this blog as way to support me being me.  Actually, I just didn’t know how to share my thoughts on Roman the Warriors blog spot when it really doesn’t have anything to do with him or the subject of cancer.  SO this blog enables me to say whatever I want to say.  I’ve been told that it’s highly therapeutic but yep, I really don’t know what I’m going to talk about. Believe me when I tell you that there will not be any order or logic to it.  I will promise that no matter what I post, it will expose a piece of who I am.  Anyone can respond and share in the experience of me.  There is one stipulation for those who participate… if you do not like what I have to say because you don’t share in my beliefs…please do me and you a favor and just click out of my blog. (Imagine me giving you a non-threatening empty smile). Tolerance does work both ways.

Welcome to my site: Melany Exposed. Thanks for stopping by; come again soon!

~Melany

PS. Please refer to me as Melany and not Mel.  There are but a handful of people who call me Mel and I’m okay with.  Thanks Peaches!