Monday, May 5, 2014
Noah's story..A journey with Schizencephaly
This is the story of my son Noah. When he was born my mother called him her angel with a broken wing. Since then hundreds of families have embraced this name to all our children with Schizencephaly
November 7, 2000, and I was now five months pregnant with my second child, and although this child had not been planned, I was just as excited as the first time.
I was no pro to pregnancy, but I knew something was different and being American Indian My mother always told me to go with my intuition and this time I just knew something was so different from the previous pregnancy,. This feeling had been there the first 5 months, but it had burst as a strong fear by now..
My doctor insisted I was working myself up (a term I since grown to hate) but in my heart, and even as a child, I had prepared myself for something big, but I had no idea until this day and at this month
I went against my doctor’s orders after repeatedly telling him I could feel this child tensing up inside me. My belly would become stiff and little movement then suddenly it would feel like the baby would ease up but still with little movement. I forced my husband take me to the emergency room where I lied to the staff. I said I was having serious pain. I wanted to get a second ultrasound. I knew I had to have that second ultrasound. It worked.
I sat in the dark room proud that story had worked. My husband sat across from me and my son, River, sat in his lap; he had turned two not long ago. The tech began the ultrasound process. She wore the smile of excitement; she would be the one to tell me my baby’s sex.
I remember hearing her first words, “It’s a boy!”
My husband and River smiled. I continued to watch the tech stare intensely at my baby. I realized within seconds her focus concentrated on the head. She seemed to continuously push my stomach more and more to get a good look. I glanced over toward my husband. A tear slipped down my face; concerned expressed itself on his face.
“Tricia what’ is wrong?”
I couldn’t answer, but I knew these four minutes we had spent looking at my baby’s brain were exactly that for which I had been preparing entire my life.
The nurse rose to stand; she bumped the back of the machine.
“I am going to get doctor to explain how your baby is doing,” she said. I don’t even know if she knew she had bumped the machine. Clearly she had been startled.
At that point I didn’t even know if this child was alive.
For two minutes I sat with tears running out of control down my face. They won’t stop. My husband tried to reassure me. “Nothing is wrong,” he would say.
I kept saying, “This is bad. This is bad.”
I was right.
The room’s anesthetic door swung open and words I will never forget spewed out of his mouth as if he was so detached from me and the issue that my feelings did not matter. I might as well have been sitting in one of his stale lecture rooms, listening to a textbook being delivered verbatim.
“Your child has a disorder called Schizencephaly, He is missing part of his brain, and we are sending you to counseling now.”
The door shut; I looked at my husband, who had placed River into his stroller; his head dropped. This was the first time I had ever seen him cry.
We were wisped into a room where a man sat at a desk. I don’t remember the walls or the size or much of anything. The man’s mouth moved up and down and back and forth, but his words were mumbles of syllables. I caught a few phrase here and there--rare, seizures, grotesque, morbid, etc. I sat there staring at a paragraph long explanation, and I didn’t even understand the words on the paper.
I did know at that point this child would be named Noah. And HE was the challenge for which I had been preparing this whole time.
It was my mother’s birthday; she had been preparing to leave for dinner with friends when I knocked on her door and fell onto the stoop in tears. Prior to this day, she and I had never seemed to get along. It seems like no matter how awful the relationship, you always want your mom and dad when something happens. And something had happened. She immediately began asking questions while her friends all huddled around. All I wanted was to stop and breathe and to hug my father. The family had rallied around their little girl. I shall never forget this moment.
My father being a simple man, had few words to say in life, but he possessed a heart of gold. I wanted him desperately but sadly he had been working--as usual. Someone dialed the phone and when he picked up, I lost it again. Between heaving sobs, I managed to spill out the words
“Daddy, something is wrong with the baby.”
I remember a deep pause then I told him between sobs that it appeared the baby was suffering brain damage, and no one at the hospital knew what it was only that it was called Schizencephaly. In his loving way he calmed me. He spoke softly, “Its okay Tricia, we only use part of our brain anyway.”
From my heartfelt grief flowed uncontrollable laughter. My father had rose to the occasion for his little girl and given her the words no one else could ever have spoken to begin my journey.
With that simple statement I realized. I was going to fight for this child.
The next Monday I returned to my OB. He was already standing in the room with the report from the hospital. I stood in the doorway and his words shook me to my core.
“If this was my wife, I would tell her to abort.”
Without even a word, I gathered my records and marched out the doorway. This doctor, my doctor, had already decided--this pregnancy was doomed. I had no idea what to do except walk away and wait until it was time to deliver.
The physical and mental violence at home intensified. My husband (now ex) constantly belittled me. He physical assaulted me, and, the most degrading of all, began spitting on me every time I walked in the room in which he occupied. I am not sure why he refused to help me gather info and to research schizencephaly. Anger filled him. More angry that ever before, and I found myself alone. Soon I began to hear my doctor’s words echo in my mind.
Torment grabbed at me as I struggled to survive this hell of a destructive relationship. Deprived from friends and family, I agonized over how to deal with the stress of having to go through all this alone.. I had virtually no support from my family or anyone else. I finally had to do something--something I had never dreamed I would ever do. I decided to end Noah’s life.
“He would never live one minute,” I had been told. Everyone, even my own doctor had been telling me an abortion was the right choice. I had been battling alone and the pressure pressed on.
I drove up to the abortion clinic shaking and barely able to stand. I felt like I was an animal witnessing hell.
I stood there watching the people laughing walking in. Was this normal? They would be free in a few hours. I could not understand the way that felt. I could not even consider the moments after this would happen. Just then I felt a strong hand rest upon my shoulder. A man bent to my ear to whisper, “Your child needs you to be strong, do not quit on him”
I never saw his face as he walked away. But I pulled up my bags, walked around the blocks a few times, heard all the voices of those who had told me I was not good enough to care for this child. I grew angry and by the time I hit the third lap, I had already begun to make a plan of just how I was going to do this!
I found a new doctor. I found Dr. Jack. He warmth and understanding emitted strength. Although I had no support I had finally found someone telling me I was going to be alright. AND NO ONE could tell me this child had a death sentence.
The hours of the next few months found me absorbed in researching and blocking out all the negative people in my life. That included my husband.
On May 19, 2000, I started contractions on May 19. I drove myself to the hospital prepared for the worst. My doctor kept smiling at me saying I cannot wait to meet Noah. His reassuring words along with my mom and dad sitting close by were the only things I had to hold together my sanity.
Two neurosurgeons told me Noah would immediately receive surgery because they had determined he had bi lateral schizencephaly. They said he would more than likely need a shunt for water on the brain. It was the most frightening and yet most exciting day of my life. For once I let all the control go and I just prayed like never before. I prayed “God please let this child be guided by you, and if he is not to live more than a minute, at least let me hold him and let him know he was so VERY loved.
Noah came into this world LOUDLY at 1:13 am. More than eight people crowded the room to help. When he was whisked to be weighed and scored the doctor turned to me with tears in his eyes and said, “He is beautiful” and at that very moment when he was placed in my arms, I met the most beautiful soul I have ever known. And he was beautiful. Within minutes he was taken off to surgery, and I would not even let fear take over. I knew he had already beaten the odds. It was 2:30 and my baby had all his toes and fingers and scored 9.9 on his Apgar. He was alive well over one hour!
Noah’s neurologists returned Noah about two hours later. I couldn’t wait to hold him. They announced he beaten another obstacle. He will not require surgery; he could go home. It was as though everything was going to be alright. I just had to stop thinking about whatever was going on in his head and start immediately planning therapies and assistance to give him the best life possible.
I did think the spousal abuse would end after Noah’s birth, but it continuously got worse. Noah constantly cried hours on end. Between the constant crying and the physical abuse, I found myself headed towards a meltdown. The abusive behavior left me with blackened eyes so bad that I had to cancel Noah’s therapy because of the embarrassment I would feel. Noah continued to do well and life seemed ok for him, and I began planning my escape for the boys and how I would make money to survive even with all of Noah’s restrictions.
At four months old Noah never seemed to stop crying. At times I found myself screaming at the top of my lungs or throwing eggs in the woods behind my house just to get some sanity. I just had no idea what was going on. He looked healthy, and the doctors were baffled. But the crying went on day and night. My husband offered no help. He would leave the house stranding me for hours to days with both boys, and often I found myself sitting in tears and staring at Noah wondering how to "fix" him. It truly drained every bit of energy from me. I had to either swing him or have him in my arms to reduce the crying, and even then he was fussy. This was the entire first four months. By the end of the fourth month stress had worn me down so completely I seriously doubted my ability to make it.
I became very isolated. I did not talk to friends. My husband had left me with no phone, no car and no way to walk away from the intense noise tearing at my head. Self-doubt started to return, and finally, when everyone was sleeping, I broke down late, one night and set up a meeting with a Christian adoption agency that did open adoptions. I just kept thinking “I am alone” and not capable of this anymore.
What happened next would shape my life and Noah’s life forever. My eager husband couldn’t wait to sign over Noah. I was a mess huddled in my bed the day he was taken. I thought it felt right; my heart just was so overpowered with grief. Even though everyone knew I had made this choice no one from the family to say goodbye to Noah. I had never felt so alone. It was as though everyone had left me and now I giving away my soul.
I signed the papers before a smiling husband. “It’s the right thing to do,” he encouraged. But I lay in bed and shook for hours. Noah had left my home but he had become very much a part of my heart.
The State of Florida has very strict rules concerning contacting foster care parents, but one hour after he was gone I wanted and tried desperately to find him. I cannot express that feeling to anyone. Sheer panic.
To calm myself, I decided to take a drive. Just as I placed River in the car he glanced up and asked with his sweet voice and asked, "Where is my brother?"
I lost it. I simply lost it. In the middle of the street I began a full on panic attack. How on earth did I let this happen!! By that night I was on the phone pleading for my son back and begging them to understand how badly I needed him. He and River were the only things I had to define me.
By day three of pleading, the adoption agency agreed that if I entered a good plan for stress and management of Noah they WOULD return him. It took two months. For two months I lay awake day and night thinking how happy I would be to smell and touch Noah again. River and I would sing songs about him, and although looking at pictures was hard, we only had to remind ourselves of how WE would be a family again. They were the longest two months of my life!
The day the adoption people pulled up, I saw Noah bundled in blankets. Though cold air chilled the walkway, I flew out the door in bare feet, and as I did the foster mother turned Noah toward me—and that was the day Noah gave us his first smile. This launched something really huge for us. On that day I vowed, no matter what, I would never leave this child's side again.
Years later I found the foster mom who changed our lives forever. I told her what had occurred that day. My determination so touched her and Noah's sweet soul so moved her, she adopted her own Schiz baby two years later. They live two towns away now. It is amazing how just one Tiny Soul had already changed so many lives. This is how I know we are chosen in life and nothing is coincidence.
I finally gathered the strength to leave my husband in 2003. I have never looked back. And since that day he has never wanted anything to do with the children. By late 2003 Noah had still not taken his first step, nor had he uttered his first word; yet, he was doing fairly well and acted as a very happy baby. My heart struggled as I watched him struggle to move. By age three I faced the fact--he would never walk on his own. His right side was almost completely paralyzed, and his eyes constantly shifted. We often had to patch his eyes and work to control his lazy eye.
Strangers’ stares became more frequent. So did the phrase, “I’m sorry.” I began to seriously restrict my time going out. We scraped by while I attended real estate school. Since I was too scared to ask for help, I did this all on my own. With the thoughts of Noah never being like other children, many nights found me crying in despair.
Noah had his first surgery at age three. Botox was used in an effort to allow him use of his right arm. It did help the tightness, but he just could not grasp toys or focus; all he wanted to do was be by my side. He cried anytime I left the room and even when I was in it. Frustration filled his little soul, for he wanted so badly to communicate. Time found both of us getting upset with our failure to express what we wanted.
In the same year Noah a new obstacle leaped before him--Seizures. At his first one, I stood looking at him thinking he looked possessed. It only lasted a few minutes, but I fright filled me so that I called 911. They responded immediately. This began hospital ordeals that would extend to days at a time. This continued for years.
In 2007 I decided to do something for Noah. Anger against all the people who said he would never live filled me. The seizures and surgeries to build muscles began making me so determined to find some answers. I knew I could not sit back and watch him die! I was set on proving everyone wrong and finding out how to fix him. I knew no other parents and tried to read and study as much as I could until one day at a local trip to the store I realized I could not shop with Noah’s wheelchair. At that point, I began inventing an easier way for parents to go to the store. This creativity developed in hopes of getting enough money to start research and help Noah since during the previous nine years, the medical field still had no more information than they did in 2000.
The entire year of 2008 was filled with tests and more than 100 seizures at a time. Constant worry. No sleep and on top of it all trying to maintain a job to get funds for Noah to get good medical care. Doctors in the hospitals kept telling me they could do nothing. The clefts in his brain made his seizures impossible to control. I just forgot to eat and drink it was so bad, and I could never sleep for fear he would die in his seizing.
The day of Dec 7, 2008, the worst of them all hit. Noah had been on my bed. I turned away to do some laundry. When I glanced back, he was foaming and blue. I gave him emergency meds to break the seizure but to no avail. My phone had no charge (of all days) and I emerged from the house screaming down the road to call 911. They arrived within a few minutes but by then Noah’s twitching, blue and blotchy, limp body was spewing foam out of his mouth. His nose was bleeding and his breathing, shallow. I followed the ambulance, watching the medics work on him in front of me.
When I ran into the room every paramedic had dropped to their knees Noah had died. I had not been there; he was gone. His body lay still for seconds, and I fell into my father’s arms and screamed so loudly my family in the parking lot heard me. My Father was always the first one to run to the Hospital. He once slept on the hospital floor because they had no couch. That was the kind of man he was. And this time He was there once again and beat the ambulance to make sure Noah was ok.
I kept screaming “Do something!!” They said they couldn’t. We all prayed and in that very moment, Noah took a deep breath like the wind had been knocked out of him. My father had been holding me, his face still white not realizing Noah had returned to life. Noah was back and breathing. It was too much for dad, and he being a kind soul and very sensitive person just kept saying, “I cannot handle this.”
Finally he was turning normal colors and let out a big laugh as I walked over to him. It was by far the scariest and most amazing thing I have ever experienced in my life.
Noah went home with me that night. While in the car, I received a phone call from Dr. Prashant Desai, who had been referred by the hospital. He told me he would be happy to see Noah and he WOULD get his seizures controlled. It was as though everything was going to be ok. This doctor told me Noah’s seizures can be controlled, and Noah would not have to live like this. I was able to sleep for once and did. Because of Noah’s high valium doses, I knew he would be ok through the night.
The call came at midnight. My dad had not yet returned home from being with me at the hospital. I threw the kids back in the car. We were exhausted but we drove to the place where dad and I had our talks. A police officer met us. My father had killed himself. The officer placed my father’s note in my hand. “I just cannot take any more pain.”
I know most people would feel their lives to be devastated, and in many ways it was. But after a few days of shock wearing off, I realized if the pain was too much for him I must be a wall of brick. In time the pain dissipated; Noah’s seizures came under control and life became sane.
With Noah’s seizures under control, I began fighting hard as Noah’s voice. Along the way I found other parents. My research in this subject has revealed many other faces of schizencephaly. Some worse, some better, but all family.
It pushed me even further into doing something for the more than 10,000 children and young adults living with this disease. In time we began making our company a part of their lives by organizing a nonprofit for research. Through searching and research and endless seizures and several surgeries later, I have found many more people like myself. My dream of helping Noah has become a passion. I have developed a need to help others, and this is why I believe Noah was placed here. God knew I would never stop fighting, and he knew I would find others to fight for.
Noah is now 12. He should have never been here. I have fought for him since the day I found out about his disease and upon being told he would die at birth. He is a miracle. Even now as strong as I am I lay awake in constant fear wondering how long he will be here. How long will I get to see his beautiful smile and hold his tiny hands and kiss him every night? The fear parents live when they have a child with these issues is overwhelming. I no longer wonder if he will walk. He is still not able to talk but we know what we are saying to each other. And he understands every word. He reaches for my hand and he guides me because this love is something no one knows except the mom of a special needs child. And I know he will not be here forever. I am not afraid to say I know one day seizures or effects from meds will take him away, but for now I continue to fight for him and the other children who need a voice. We keep pictures of the ones who have passed away to remind us they are guiding us into finding cures and awareness and hope.
I have learned to not ask why anymore. I accept the fact this path was known to me from a very young age. I just never realized how beautiful the climb would be.
When I see Noah go through surgeries for his back and legs and have to take more than 11 pills a day, I sometimes wonder why his small body has to go through all this, but I realize how amazing and strong he is and how he is here to leave a mark in this world. If not just a tiny footprint.
Noah was never a mistake as I have been told. He is a child born with a purpose who has been loaned to me from God to change this world somehow. He is doing this. With a body unable to move and a voice that is still unheard his message is living proof we all have a deep meaning in this world.
For this gift I will always be grateful. Thank you Lord for choosing me!
My Angel with a Broken Wing
By Tricia Dennis
By Tricia Dennis
(Where does this poem begin)
I met a boy
An inevitable man
That will stand before me
And one day shake my hand and say,
"Hello, my name is Noah...."
This I know to be true
Is born and lives in the eyes
And he sings to me
Sweet melodies of purity
Messages of hope
Intertwined in a song
Called Neptune Blue
Speechless words swell
In the azure orbs
Of this bright young soldier
And laughter is his weapon of choice
His voice to help teach those
He laughs with a surprising prank
As you become the joke
He has yet to walk, or skip, or dance,
But this special lad can fly
In ways we cannot dare
As he has no cares for the silly things
That surround us
In our beginning world
For he is a leader
Of all the bodies
Of water around him
Unable to drown
A conductor of the current moment
And the theme to a dolphin symphony
Known as Neptune Blue
Resounding images wave
Within the deep royal droplets
Of Noah's subliminal stare
And silence is his vehicle to us
His bus to deliver the souls
He transforms like the dolphin
And directs away from paths that lead to fear
As you become a passenger
Of the spirit
He has yet to run, or jump, or swing,
But one day he will surely swim
In an ocean all his own
As his story will live far beyond
The pull of this planet
That holds him down
Yet he is a miracle
For all the world to see
Unable to hate
A provider of ultimate purpose
And the reason for this poem
Called Neptune Blue....
By Tricia Dennis
One day while God was thinking
He came up with a plan
I told him I wasn’t sure I could
But he said “yes, you can”
He asked me to give you life
And teach you all I knew
I told him I wasn’t fit
To be a mom to you
But after all I trusted Him
And he believed in me
I said I will try to see
What you ask me to be
He said this won’t be easy
And life won’t be the same
Then he smiled and put His hand on mine
“Noah is his name”
I agreed to all of this
And gave Him my okay
He said I would understand
It would all make sense one day
He told me you would suffer
But there was nothing I could do
Then I cried there with God
For trusting me with you
He placed you in my arms
And put His hand on me
He said “You have been chosen”
And then he let me be
At first I was afraid
I cried myself to sleep
I made a promise to God
A promise I must keep
And when I see your smile
I remember God’s love
And the faith and trust He gave
That day from up above
I try to be so strong
And give you all you need
I know that when I carry you
That God must carry me
And just the other day
When you were sick in bed
I felt God touch us both