- Posted June 30, 2014 by
This iReport is part of an assignment:
Raising a special needs child
More about Flavia and Inaki
The thought of a highest reason, a purpose, the need to believe in God’s will, gave peace to my hurtful soul, relief from the turbulence that I was going through with feelings of guilt, depression, infinite pain and the need to find answers.
When Inaki came to my life, I realized that I never before could truly relate or understand people going through difficult situations like having a child with disability, a terminal illness, the loss of a son/daughter… There is not a tangible understanding until it is happening to you. Feelings of despair, fear, guilt. Only you know what it is, the suffering and grieving for the things that will never be, will never happen, the dreams that you have to bury forever. And all the worries… health, needs, accommodations, therapy’s .
How the family, society, the world will look at my child, will be loved, will have friends? He will be part, or he will be excluded from a society where people fear what they don’t know, and people fear disability , the lack of knowledge makes people to judge somebody that acts or looks different , as a threat, to judge the people with disability not for what they are, if not for the uncomfortable feelings that they inspire.
Deep inside, there is this pain that will never let me, there is happiness, laugh, celebration of simple things in life, but the pain is coming to the surface when I less expect, to break me. The tears coming from that place I thought it was forgotten. I pray, and pray… and there is him, my perfect son, a piece of my own soul going around in this imperfect world.
Inaki was born in Argentina, very premature. In a hot day of January ‘98, he was ready to see the world. My due date was in April, I was scared, the doctors sceptic. But Inaki showed us that his plans were to stay, to live, to prove that “Believe” it is not just my favorite word, it is a powerful tool, when you despair is making you fell.
The genetic test said “Down Syndrome”, later they add “autism”, he doesn’t talk and is not independent in the very basic life skills. But don’t listen to this. This are labels that don’t describe my son, because I am the proudest Mom in the world. He is 16 years old now, a handsome boy with a beautiful smile, kind, that will take your hand to show you his needs, that learned through repetition, repetition, thousand times, that loves to see his favorite movie thousand times, or listen to Bee Gees and dance with me. This son that now for the first time is giving me a kiss, or is able to say MAMA, after 16 years or speech therapy….
All the books, all the expectations, all the worries about things that may happen, and never do, or new things coming in the way… All that stuff, just exhaust your strength today, your energy, it is not letting you take day by day, the good and the hard too when is coming. I learned to focus in Inaki’s unique needs, and his strengths, I learned to wait for him, I learn patience every day and respect for his feelings. My frustrations only come when I forget to place my expectations on his side.
Yes, things that people takes for granted, usually are very hard when you have a child with disability. I have to be healthy, to always be able to take care of him, I have to live a long life… to walk his journey with him…
Since almost 10 years, I am choosing to stay in this country because the love for my son, I miss my family, friends, my culture, but I am able to conquer challenges that I never thought I could, I am able to raise from sadness and hopeless thinking’s, because he is there looking at me quietly…. with those eyes that I can never fail. This son that inspire the best of me as a human being.
God gave me the blessing of knowing this infinite love, to find my purpose in life, through my work in special education, and finding ways to have people looking different to diversity, to people that does things in different ways, to not judge anybody for what it looks on the surface.
We are all brothers and sister’s, all under the same sky, all part of a whole spirit. Please don’t look away, open your heart, give your hand, give a smile. Let your compassion embrace disability and diversity , without fear , because at the end everything is just about love.