TheMighty.com has asked everyone to write a letter to the specific disability or disease that you or a loved one is living with. This is my letter to my sons PTEN Deletion.
Dear Deletion,
My mother-instinct told me you were with us long before we were formally introduced. You witnessed the birth of my precious child. His head and body too large (with you) to come into this world without the help of modern technology. You stood there silently as the doctors marveled at the giant infant in my arms. I carried you, I rocked you, I held your tremnedous weight in my arms every day. You tried to prevent my tiny treasure from hitting his milestones. I wondered if your weight would be too much for him, but as he pushed forward learning to walk and talk I learned to be greatful for things other parents took for granted. As you tested his ability to overcome obsticals we both became stronger. He discovered the ability to work hard and accomplish great things and I became patient and more compassionate.
I remember the day we were first introduced. My husband and I sat in a tiny room while medical experts and social workers revealed your true identity. At first I was thrilled to hear your name. Thrilled to finally learn about our sons mysterious cohort. When they told us that someday you would likely give him cancer and that you were the reason that he now suffered from autism, my feelings for you changed. I hated you. I feared you. I wished you never existed and I prayed that you would disappear.
You stood inbetween me and the other mothers at the library, the park, and the playgroups. You made them feel awkward as they boasted about their childs latest accomplishments. They would catch a glimpse of you and and their look of pride would turn into something uncomfortable as they would stammer off an appology or offer the reassurance "not to worry" because "susie is just gifted...and most kids her age can't do that." I felt so alone and I didn't think I could bear watching you hold my darling in your possessive and isolating grasp, preventing him from playing with others. Making it impossible for him to run or jump like the other kids. Your chaotic presence overwhelming his senses, making it difficult for him to concentrate, leaving him unable to find the words to express himself. Did you realize that his love and compassion for others would barrel over you? You could not stop a child who offers such joy from being loved.
You have taunted me with your power. You have already threatened to take his life and the memory of that day still haunts me. Anxiety attacks me while I sleep and I wake unable to breathe. When I think of how incapable I was of protecting him from you I feel worthless as a mother and weak. On the other hand when I look at the scars you left behind I am reminded of his strength and it renews mine. You should know, I will never give up. I will do everything I can to protect my baby, and will fight with him no matter what.
I've learned from watching my son navigate through this world with your companionship. You've educated me on topics ranging from special education to civil liberties. You've reminded me that the value of a person does not lie in their ability throw a football or make honor roll. You have taught me not to judge a person by their weaknesses. You have shown me that there are no limits on any individuals possibility. You've introduced me to a community of people with special needs and given me a greater understanding and compassion for my fellow man espeacially those with physical or intellectual disablities.
You do not dicate our lives, although your challenges have forged us into something beautiful and strong. I have stopped wishing you would magically disappear because I know you will not. Now my hopes are for medical advances that will disarm your threats. I write this letter to you in hopes that more people will learn your name. In hopes that more funding and research will find solutions to the trials you've promised for us.
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