My Warrior Princess…..Tori

I never knew a child could teach an adult so much….until I had Tori.  Tori’s journey began on December 20, 2006 her birthday.  She came into this world fighting after she aspirated meconium at birth and could not breathe.   During this time Tori coded and then when she was revived, only had 7% oxygen saturation for an hour. She fought for her life and survived getting placed on a life support system called ECMO.  We were told that Tori had brain damage from the lack of oxygen, but they could not tell us the extent.  On New Year’s Eve 2006, when Tori was 10 days old, she suffered a grade four hemorrhage.  We were told that it was time to let our baby girl go.  They let us say good bye to the little girl who we loved so much and then they took her off the life-support.   Being in the waiting room while they removed her from the machines was the absolute hardest time in my life.  I prayed harder than I ever had, and was so confused why this was happening to this beautiful baby.

The doctors came out when the procedure was finished and told us Tori actually made it through the procedure and was in stable condition and we could go see her.  This time tears of joy flooded me.

This damage to Tori’s brain began Tori’s battle with Seizures.  The damage from the hypoxia and the hemorrhage resulted in Epilepsy.  The first we heard of Tori having a seizure the doctors said she has facial seizures.  I was in denial and of course thought the doctors were wrong.  They treated Tori for a year with Phenobarbital, and my little fighter would spit it in our face when we gave it.  Her warrior qualities could sometimes be quite a challenge!!!!  After a year Tori was tested with an EEG and was able to come off of the medication for seizures.  We thought that we kicked the Epilepsy and that it was part of her past, until the day, when Tori was three years old, and she had her first grand Mal Seizure.   I was in Boston and got the call she was having a seizure and the ambulance was on its way.  I flew home praying and begging god to once again carry our little girl through this hurdle.

I blamed Tori’s immunizations that she recently had for the seizure and thought it was a one- time thing.  Only…..it wasn’t.  Tori continued to have grand mal seizures on a regular basis.  No medications would stop the seizures.  As Tori’s epilepsy battle went on the seizures became more frequent, worse and longer in duration.  She would seize for over a half hour at a time and even Diastat no longer would stop the seizures.  I was afraid for my little girl.   If she caught me crying she would tell me not to worry and that she would be OK, but my fear continued.  I could not lose the most precious gift I ever had.

On April 6, 2011, after months of testing, Tori had the right frontal lobe of her brain removed to try to control and hopefully stop her seizures.  Tori developed meningitis from the surgery.  She had to have a PIC line and IV meds for 6 weeks.  But through all of this Tori kept a smile on her face and was making the hospital staff laugh at her funny jokes and sarcasm.  We were worried that our girly girl would be upset the first time she looked at her head and saw she had not hair from the surgery.  Instead she looked in the mirror, Smiled and said, I have a bald just like my PAPA and Mr. Scott!!!!  Then she called them to brag to them she was just like them!

This was not the last of Tori’s seizures, even after the surgery Tori continued to seize.  It was less often, but we made the decision to get her a seizure dog.  She loves her dog Scrappy and he has brought her so much comfort and gives her the peace of mind that she sleeps better.  (all of her seizures happen during sleep so she was afraid to sleep)

This is Tori’s journey to date.  She has not had a seizure in almost six months now and we know her strength got her and us through this journey with her.  She amazes us with her courage, love for others, and love for life.

Tori had a care page that we created when she was one day old.  Over 400 people wrote on it to support and show prayer for our little girl. Many people were family, friends, and many were strangers. They would write about how our daughter taught them what was important in life and what strength and faith really was.  She is a true warrior and I am so proud and lucky to be her mother.

The Brave Little Soul

By John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is a great miracle.”

God continued, “Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.” Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you, Tori. ” God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased