Saturday, April 27, 2013

His birth, my hope for him...

I guess I will just take a breath and begin to tell my story which is his story also.

When my boy was born he was the sweetest lil guy I'll ever see in my life.

I had chosen his first name long before he was a part of my soul and my blood. I named him Thomas J (yes, just a "J") after the boy played by Macaulay Culkin in the movie "My Girl" . The reason I chose that name was because that boy in the movie was a sweet, kind, compassionate, thoughtful child and my hope was that I would have a child with similar qualities. My son was also given a Thai middle name chosen by his Thai grandmother Somkid (Yi) and her extended Thai family members. The name they chose for him was Suntri (pronounced soon-tee) and it meant: "quiet well-behaved child".

On November 1, 1994 he came to me without a cry to announce his entry into my world. I questioned if he was ok as they lifted him from my body and being because his silence was worrisome. They assured me he was healthy and I watched as they cleaned him up and examined him in preparation to put him into my waiting arms. I didn't know then that the absence of his cry and my concern and question about his health and happiness would be a glaring indication of how I would live the rest of my life with him.

I will say right now that from that point forward my entire life became about attempting to ensure his happiness and health; it's all I ever wanted for him then and all I will ever want for him in the future. Being a lawyer or a doctor or a garbage man or whatever, was his dream to choose, but whatever it was he was to become, I wanted it born from a seed of happiness and health and whatever he chose to become I would support as long as he was happy.

As time passed, throughout his life there were often silent questions for me about his health and happiness. I could never quite put my finger on what I felt wasn't quite right and came away with infinite answers to my questions, and an ethereal not knowing that would plague me until recently. Throughout his young life he fought off great fear and anxiety and transient depressive episodes but his fight was valiant and I often found him in my arms needing me to dust him off, put his feet solidly back on the ground, and send him back out into his world.

This is not to say--not even a little bit--that he wasn't happy. Seeing him smile for the first time, hearing the first musical sounds of his laughter, finding him pushing his beloved Thomas the Tank Engine train around it's wooden tracks, seeing him from my front window perched in a tree laughing with the neighbor boys, seeing him on the ocean shore tossing popcorn into the wind for seagulls in flight and watching with wonderment as they swooped and dove for his offerings...

Cannon Beach, Oregon

...seeing him contemplative by the river throwing rocks in or drawing swirls on the surface of the water with a stick, seeing him hand in hand with his first girlfriend, seeing him run off to a carload of teenagers waiting excitedly out in front of our house, all showed me the seed of happiness and health sprouting and growing inside of him.

There was always the nagging questions though.

For every handful of healthy, happy seeds planted there was a sickly, sad weed that would inevitably crop up marring the beautiful landscape of his presence. I would be in the garden pulling and tugging at the weeds with all of my might but they would be firmly rooted amongst the healthy sprouts and I would shake my fist at them, mutter a muted obscenity and return to tending the sprouts and maturing plants of his health and happiness.

As he aged I marveled at the garden of his being, lamented and cursed at the weeds but not once did I give up on tending to the maturing tree saplings, mighty sunflowers and other signs of happy, healthy life. It was those regal signs of health and happiness that would provide shade and respite for the moments when we needed to escape the hot, sweltering, glaring heat of the illness that would begin to chip away at the promise I had held onto for his future.

Just as he was on the cusp of entering adulthood--the prime of his life, the dark tendrils, the creeping voices, the uncertainty and fear of paranoid schizophrenia began to take over the beautiful garden I had tended to for 18 years.

This is my story but more importantly this is his story too and it is my battle cry at an insidious illness that I will make it my life's purpose to conquer for him or at the very least lessen it's blow on his burgeoning future.

(My Facebook Page About Schizophrenia)


  1. Oh sweet woman.... How I know your pain as I have a 20 year who suffers too! There are so many OD us fighting this horrible invasive disease!

  2. Melanie, I too had strange feelings about my son when he was born. He had a difficult delivery with two days of Pitocin ugh!!! And then the second day of his life he was sent to the NICU with a high fever and no other signs. He stayed in the ICU for 10 days while they poked, punctured, xrayed, drew blood, urine, etc. I could only hold him certain times, I was so depressed during this time, worrying about my first born, my son. He was finally diagnosed with renal tubular acidosis and the treatment for it was a supplemental bottle with sodium bicarbonate. But there were times, while he was an infant, that I would look at him with this strange feeling, something might not be right. I have a first cousin who is paranoid schizophrenic. My mother's first cousin as well, so we have the genetic factor on my mother's side. But I wasn't really very worried because I thought they weren't close relatives, and besides.....who gets schizophrenia??? Surely not my baby! And as he grew, there were some issues. He was diagnosed with ADD and put on ritilan. Then later generalized anxiety. He had phobias when he was in pre-school. And when he was 17 he dropped out of high school because he could NOT pass senior math, just couldn't do it. We were in agreement with this, along with his teachers, also he had the 504 federal thing, where he could have extra help, more time, a room to himself, when he was taking a test. Still, I didn't think Sz. I just thought he was very sensitive. Which he was. And still is. And I mean sensitive in a caring and compassionate way. He couldn't see a person in a wheelchair without bursting into tears! He refused to play sports of any kind, but later during his teen years he was an avid skateboarder (a solitary sport). And now, he is 28. I'm Jean, the mother who has sent you private messages, just so you get the connection. :)

  3. Melanie, when my first born, my son who is 28 and diagnosed paranoid schizophrenia in January 2013, was born he had a difficult birth process with Pitocin and ending in C-section. Then he went to the NICU on day two with a high fever but no other symptoms. He was in the ICU for 10 long, agonizing days while they ran test after test. I was so depressed during this time. They finally diagnosed renal tubular acidosis and the treatment was a supplemental bottle (formula with sodium bicarbonate) which also upset me because I wanted to breast feed. But I was able to breast feed him after all. And the RTA was deemed cured by the time he was 8 mos. old.
    He was a very sensitive, sweet little boy, with blue eyes and curly blond hair and smiled and laughed all the time. But still....what is it? Can't put my finger on it. There is a genetic factor, my first cousin is a paranoid Sz and my mother's cousin as well, both on my mother's side. During his very early years, starting with pre-K, he had phobias, he was diagnosed with ADD and put on ritilan. For sure he couldn't concentrate, but he was never hyper. Active, like a boy, but not hyper and never a behavioral problem. The teachers loved him! Then there was generalized anxiety disorder, then later again ADD. He would never play sports, until his early teens when he became an avid skateboarder. I never really worried very much about the gene because I thought they were too distant, and besides: Who gets schizophrenia??? Not my son! So I'm wondering if all those things were early signs? I just had this feeling, almost like a premonition, maternal instinct? Something wasn't quite right. But then in 2010 he was diagnosed with schizoid personality disorder! I thought that was heartbreaking, until I became aware that SPD sometimes (more likely than not) becomes frank Sz! Which it did. I am always sad. I am heartbroken. Well, I don't have to tell you, there is nothing like being a mother of an adult mentally ill child.


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