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I Am The Child

I am the child who cannot talk.  You often pity me, I see it in your eyes.  You wonder how much I am aware of -- I see that as well.  I am aware of much--whether you are happy or sad or fearful, patient or
impatient, full of love and desire, or if you are just doing your duty by me.  I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs or comments about the world about me.  I do not give you rewards as defined by the worlds standards -- great strides in development that you can credit
yourself; I do not give you understanding as you know it.

What I give you is so much more valuable-- I give you instead opportunities.  Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your
abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no
answers.  I am the child who cannot talk.

I am the child who cannot walk.  The world seems to pass me by.  You see the longing in my eyes to get out of this chair, to run and play like the other children.  There is much you take for granted.  I want the
toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again.  I am dependent on you in these ways.  My gift to you is to make you more aware of your great fortune, your healthy back and legs,
your ability to do for yourself.  Sometimes people appear not to notice me;  I always notice them.  I feel not so much envy as desire, desire to stand upright , to put one foot in front of the other, to be
independent.  I give you awareness.  I am the child who cannot walk.

I am the child who is mentally impaired.  I don’t learn easily, if you judge me by the worlds measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife’s and
conflicts of a more complicated life.  My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me more to give you love, I give you the gift of simplicity.  I
am the child who is mentally impaired.

I am the disabled child.   I am your teacher. If you allow me, I will teach you what is really important in my life.  I will give you and teach you unconditional love.  I gift you with my innocent trust, my
dependency upon you.  I teach you about how precious life is and about not taking things for granted.  I teach you about forgetting your own needs and desires and dreams.  I teach you giving.   Most of all I
teach you hope and faith.  I am the disabled child.
Author unknown


 


Ben Apr 28 1996
 

Benjamin continues to fight Battens disease. We at smilesnhugs hope that one day a cure will be found for all these illnesses and our children wont have to suffer ever again.
 

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Luc F.

 Luc is three years old and  was born with nail deformity (progressive nail dystrophy) since birth and since then it has progressed to a much more serious illness.   Doctors diagnosed Luc with dyskeratosis congenita  which is a rare multi system disease, skin disorder. This disease is very rare (only 200 reported cases world wide) and more common in males than females.  A Bone marrow match has been found For LUC!!!!!

           Luc Has gone through the necessary surgery that he needed to save his life.  After the transplant Luc was isolated from others so that his body had time to accept the marrow. There is between a 65 and 75 per cent chance of Luc surviving the procedure. Luc has Dyskeratosis Congenita, a disease so rare there are only about 200 documented cases in the world. It is a  multi-system disease which attacks the skin, blood, bone marrow, organs, tongue, eyes and other parts of the body. Luc is now home and well on his way to recovery.  His body accepted the bone marrow with very few complications. With prayers and wishes he will have a full recovery from his illness. We wish him the very best.

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Zachary J.



June 04 Update

Zachary's health continues to improve  as he nears his ninth birthday and  on going physio therapy  has enabled him to crawl around on the floor and with help pull himself up. He is able to communcate with his grandmother by his smile and sounds although he still has the mentality of a 2 year old child. He is still in diapers and has a security blanket. He's able to eat all foods if it is cut small enough and can drink through a training cup for a toddler. Although Zachary is blind he knows when its light and when its dark and as with most kids he likes to play when its bedtime. He's a playful child and enjoys his bubble baths most and making bubbles.   He treasures toys that jiggle or vibrate with sounds. He loves to hear music and those of womens voices singing appease him and calm him. When he is agitated he tends to rock and bite himself for no reason. So keeping Zachary calmed is a priority.  Zachary is  still paralized on his left side and he will need surgery when he is 12 or 13. Through the power of prayer and miracles he is a happy and healthy child in many ways. Surrounded by family that loves and cares for his every need.


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Laurel's miracle baby, Mia.
Mia.H.
April 17 1998


Mia has celebrated her third birthday and has defied doctors yet again. The doctors gave her very little hope of surviving when she was first born and yet here she is today. A beautiful child graced with His love. Mia's health is still very unpredictable but she continues to defy all odds and is doing activities never thought possible by doctors.  Mia can stand in her stander and play with her toys for short periods of time. Mia continues to astonish doctors regularly.  Despite her  respiratory becoming more difficult, she courageously fights to stay with her family as long as she can. With every breath she takes she defies doctors daily.  She tends to get lost in her mind at times but she comes back to  reality in her own good time. With everyone's prayers and love, Mia will continue to amaze doctors everywhere. Laurel and Darcy know that one day Mia will be taken from them but until then they cherish every minute. They consider it a privilege to be able to have spent the many hours loving and caring for such a beautiful little angel. They will have had the opportunity to share their love, and to be loved by Mia. For that they thank God for his very special gift.

Mia in her stander, serves tea to her imaginary friends.

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PEOPLE DO CARE!
YOU  PROVED IT!