by Judy Robinet, Executive Director
One of my most treasured of gifts that I have ever received in my lifetime was given to me by children with disabilities and their parents. I needed to be taught how to love unconditionally. I still have more to learn and it is hard for me to write this, but I seem to equate your actions with how much you love me. You know, that balance between ‘if you’ and ‘then you really love me’.
It still brings tears to my eyes when I read author, Jane Bernsien’s book Loving Rachael: A Family’s Journey from Grief. I had permission to use her words to introduce a chapter in my book: A Life Worth Living, a book about parenting infants and preschoolers with visual impairment and disability: “If there were a magic pill that would rid her of all her deficits, I would give it to her but I don’t love her less for her imperfections nor do I love her in spite of them though there are times when my love is tainted by sadness and fear. I am with you Rachael. These last four years have prepared me. I have learned to introduce you to the world and to be proud of you in the face of pity or ridicule. I have grown to love you so deeply that I can truly say that I can no longer imagine my life without you”. – Jane Bernsien
Those words may lift your spirit for a moment, but the situation may be far removed from your reality. Many mothers live those words daily. I am related to such a loving mother, my niece Raquel. Addison, her little girl pictured above with those thick black curls, cute facial expressions and radiant smiles, is my very much-loved GRANDniece. Facebook is so much richer for me because of Raquel’s posts. To help you better understand, Addison was born with Acardi Syndrome and was only given a 20% chance of living to her first birthday and a 50% chance of not making it to five years old. To make these predictions all too real, Raquel has attended the funerals of young children with Acardi Syndrome.
On Addison’s 4th birthday (August 25, 2014), Raquel posted the following on Facebook: “4 years ago today at 9:49 AM, Addison was brought into this world. Never thought in a million years that I would be a Special Needs Mom. But I am honoured to know that Addison knew I would be the perfect Mom for her. This has definitely not been an easy 4 years but I look at Addison and love her with all my heart and tell her every day that she is the most beautiful girl in the whole wide world. Addison has the best circle of caregivers and family that love her more than words can say. Her smile will make you want to be a better person. HAPPY BIRTHDAY beautiful girl.”
Four years later, on Addison’s 8th birthday, Raquel’s added “I can’t believe I still get to post that it is her birthday. Life is so precious. This has been a rough year for her and especially me and it is because of her that I am a fighter and wasn’t going to give up. Her smile still lights up a room (Even if it is 3AM). There are so many things I wish I could change for Addison but what I would never change is being her Mom. It is the hardest but most rewarding! Love you Addison. Happy Birthday. Love Momma.”