Tripp, a very special 2 year old boy who battled an ugly illness, died tonight.
His blog is "EBing a Mommy:The challenging yet rewarding journey of caring for my son with EB".
He died at 2 years 8 months, and he had a strange/rare illness named EB for short... Tripp was born on May 14, 2009.
He was diagnosed with a rare genetic skin disease called Epidermolysis Bullosa "EB." Any type of friction on his skin or mucous membranes causes blisters. He was not supposed to live beyond a year.
Rest in Peace, Little Drummer Boy.
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 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". 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 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.
~
Sunday, January 15, 2012
Take a Moment to Understand Special Needs Parents
This was a post by someone with a similar situation... Sums up many things we go through. Keeping it here so I don't loose it.
"Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next.
We become educated in the legal,medical,and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it,eat it,sleep it, we also dream it.
Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled,humiliated, felt guilty,made ashamed, brought to the point of begging at times,made angry,made determined,driven to the point of desperation,all for the sake of our children.
We have sat in hospitals for days,weeks,months praying that our child makes it one more day,praying that our child lives long enough to know how much we love them,stood the onslaught of surgeries that could be life threatening,procedures that could make the situation worse,been through treatments that would make a grown man cringe,all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things.
We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made,every piece of equipment,every new medication,every strange idea on the hope that it might work. We have dealt with quacks,conmen, inexperienced people,uncaring individuals,rudeness,and cruelty toward our children. We have lost everything,sold everything, traded everything in the pursuit of help for our children.
We have given up friendships,family, relationships,and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people.
We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts,angst,miseries,hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors,more surgeries, more treatments and procedures with a smile on their face.
We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have,we see their abilities as well as their limitations when they go through the procedures,treatments, surgeries,and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage,determination and –most of –the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives.
So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies,more complicated messes,and deal with more situations than you can imagine. We have been bent, sometimes broken,medicated, treated,depressed,angry,sad,and most of all a little fearful of the future.
We have slayed more dragons,conquered more worlds, invented more items,discovered more truths,and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors,therapists, surgeons,nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses,other children,housework,jobs,friends, family,society,and our own health because we have been busy in the pursuit of a better life for our children.
So do not think that we are incompetent –instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves.
So listen to us when we speak because we know what we are talking about. Don’t talk down to us,respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive,we earned it the hardest way possible,and we carry that badge of honor with us in every single thing we do,every word we speak,and every action we take.
May God Bless"
by Anonymous Parent of Special Needs Kid
"Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next.
We become educated in the legal,medical,and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it,eat it,sleep it, we also dream it.
Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled,humiliated, felt guilty,made ashamed, brought to the point of begging at times,made angry,made determined,driven to the point of desperation,all for the sake of our children.
We have sat in hospitals for days,weeks,months praying that our child makes it one more day,praying that our child lives long enough to know how much we love them,stood the onslaught of surgeries that could be life threatening,procedures that could make the situation worse,been through treatments that would make a grown man cringe,all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things.
We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made,every piece of equipment,every new medication,every strange idea on the hope that it might work. We have dealt with quacks,conmen, inexperienced people,uncaring individuals,rudeness,and cruelty toward our children. We have lost everything,sold everything, traded everything in the pursuit of help for our children.
We have given up friendships,family, relationships,and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people.
We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts,angst,miseries,hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors,more surgeries, more treatments and procedures with a smile on their face.
We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have,we see their abilities as well as their limitations when they go through the procedures,treatments, surgeries,and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage,determination and –most of –the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives.
So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies,more complicated messes,and deal with more situations than you can imagine. We have been bent, sometimes broken,medicated, treated,depressed,angry,sad,and most of all a little fearful of the future.
We have slayed more dragons,conquered more worlds, invented more items,discovered more truths,and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors,therapists, surgeons,nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses,other children,housework,jobs,friends, family,society,and our own health because we have been busy in the pursuit of a better life for our children.
So do not think that we are incompetent –instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves.
So listen to us when we speak because we know what we are talking about. Don’t talk down to us,respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive,we earned it the hardest way possible,and we carry that badge of honor with us in every single thing we do,every word we speak,and every action we take.
May God Bless"
by Anonymous Parent of Special Needs Kid
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