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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Friday, October 16, 2009

The Brave Little Soul

When I look at Timmy I can see a Brave Little Soul. I can imagine him jumping up and down, asking God to send him to Earth so that he can bring Love and Goodness to others.

In Timmy's almost six years of life, he has touched the lives of many and taught others a great deal about life and living.

He has taught me...
-The true meaning of Unconditional Love.
-He has given me the courage and strength to stand up, seek and fight for what I want and believe to be in my or his best interest.
-Compassion - He has shown me that there is others in this world and in my life, that the world and life doesn't just revolve around ME.
-Patience - That through hard work, persistancy and dedication, inchstones can happen and nothing is impossible.
-Empathy -That verbal communication isn't always necessary. That through his award winning smile, his contageous laughter, his cries, and body language, I'm able to experience and understnad his world.
-Creativity. That when an object is out of our reach due to its expense, be creative and adapt something or make our own.

He has taught the OB/GYN's and Perinatologists who overseen my care while I was pregnant, that Miracles CAN and DO happen. To be honest with their patients, but also inform the patient that they have see success stories. And let the patient make their own decisions as to what and how they want to continue with the pregnancy.

He taught his NICU Neonatologist that it is sometimes necessary to think outside the box. That not all medical situations follow what he has learned and experienced throughout his medical practice. The most impartant thing that the Neonatologist learned was that it is posible for a baby to be born with completely blocked nasal passages. Now when a baby first enters into his care the Neonatologist will try passing a feeding tube down each nasal passage to ensure that the nose is open.

Timmy has taught Doctors and Specialists that the Parents know the child better than they. So the care that they provide will be more affective IF they were to take the time to sit and listen to the parents. Address all of the parents concerns. And then offer suggestions, ideas and advice.

He has taught Teachers and Therapists that if realistic goals are set, placed into the right conditions and given the proper materials, along with persistance guidance, EVERY child CAN learn.

Timmy also has brought love, kindness, empathy, and inspiration into the lifes of family members, friends and strangers.

Here is the story of the "Brave Little Soul" I hope that it brings joy, love and inspiration into you life, as well.

"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 the greatest miracle of all. 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 herself. With her 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".
God and the brave 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 her suffering and God's strength, she 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.

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