|My miracle…Courtney Elizabeth on her 21st Birthday…|
I am sure you have heard about or maybe you have even read it. I am referring to “the letter” that someone wrote to the family of an autistic boy living in Canada. I have been sitting with these feelings all day today and I have decided to enter the fray, no matter what comes my way. This type of ignorance and bigotry cannot go unanswered. It just cannot.
I found out about the letter through one of the blogs I subscribe to, Jo Ashline’s a sweet dose of truth. I love Jo’s blog. It’s funny and real, showcasing the reality of raising an autistic child. I urge you to head over and check it out. You won’t regret the time spent getting to know her.
Anyway back to said letter. Where to start, where to start…
(deeeeepppp breath in….)
When I first read the letter, my first instinct was to throw up. The wave after wave of anger coming through each and every word was palpable to me. I felt like that person was standing in front of me screaming at the top of their lungs. My first instinct was to protect my Courtney. My second was to rip the letter writer’s throat out for spewing such vitriol in my air space.
I have been the mother of a special needs child for twenty-one years. I have had other families leave the playground after my daughter had a seizure acting like they would “catch” whatever she had (can’t catch it sista…or else I would have the same ailment). I have had people in the grocery store openly stare and make comments about my daughters drooling or hand smacking that I could hear as they turn away in disgust (babies get the pass for drooling but my child who is like a nine month baby get’s judged for a little drool. She even has a bib for goodness sake). I have had people ask me to leave a store or a park because Courtney’s singing was “too Loud” for them (my friend I praise God every day that she even makes noise. Heck I praise him because something on her actually works the way it should!). I have even had people in my house of worship tell me that children like Courtney don’t belong there (God made her the way she is and this is HIS house so bug off lady!).
You name it. I have heard it or worse. My favorite was when one individual handed me the pamphlet for the local nursing home letting me know there was a wing for “the special ones” like Courtney. ‘What, you don’t think I can take care of her myself?” I asked.
“Oh no,” they assured me “She just doesn’t belong here. She belongs in a home with others like her. It would be better for you and your family as well as those of us who have such difficulty being around these kids. I mean what kind of life can she really have anyway. I just though this might help you and your husband make the right choice.”
“The right choice? OK then…so leave and don’t ever be around me or her again.” I proceeded to walk away from her at a very brisk pace, leaving said brochure in a puddle on the ground. I thought if I said more, I would be well on my way to committing homicide. My family needed me too much for me to serve jail time for killing a stupid person.
So you see, these ideas are not new my friends. What do you expect in a culture where millions of “special” children are being aborted every year? What do you expect when the elderly are being offered “euthanasia” as part of their end of life care? We dispose of human if like a dirty napkin. Crumple it up and toss it away.
What’s new is that we have the blogosphere, so now I know about something that happened in Canada which twenty-one years ago would not be the case. I can completely relate to what the grandmother and mother of this young man felt upon reading these words. It feels like your heart is getting ripped out of your chest and stomped on so you can’t breathe.
It’s every parents nightmare to be told that your child is different and will never fit in, will never be “normal” whatever that is. It’s every parents nightmare to be threatened by someone in your own neighborhood who wants you to leave. It’s every parents nightmare to feel trapped in their own life without a key to open the door and allow the light of love and hope to shine through.
I have felt everyone one of these things and so much more.
I know what it is to be alone, completely and utterly alone, looking down at your child sleeping peacefully as you find yourself begging God to just take her. Take her in her sleep. Don’t let her hurt anymore. Don’t let me hurt anymore. Just bring her home to Him and everything would be better.
I know what it is for the doctor to walk into the room and tell you that it’s all “over”, nothing else can be done. We needed to prepare for her death. I know what it’s like when your son is embarrassed to bring his sister somewhere because everyone will look at him differently and not include him. That is understandable but truly unbearable. I know what it’s like to desperately want to be friends with someone but they just can’t accept your child so therefore that relationship is dead in the water.
It is a very deep and dark place to be without hope, or love, or kindness.
Fortunately for me , I also know what it is to be loved.
It is life changing, hope giving, and absolutely joy making moment when you know that not only are you loved but your special child is as well.
I know what it is to be surrounded, like that mother in Canada is right now, by people who care. To be surrounded by other parents of special ones who can look at the uniqueness of their child and see all the possibilities for their child’s future. They take nothing for granted…nothing and they rejoice with every success no matter how “little” it may seem. I know what it is to be surrounded by the love of My Creator who made my daughter just.as.she.is. He knows her journey from beginning to end. He knows her parents heartache and hope from beginning to end.
I have been in that deep dark place where hope and love dies a little bit everyday.
I don’t EVER want to be there again and I have chosen to live in the light. I have chosen to chronicle my daughters life here in this space and rejoice when she takes a step, heck, when she bears weight on her own legs. I have chosen to celebrate every smile, every “humming” song, every giggle, every can-can kick. Every.single.moment.that.she.lives is a flipping MIRACLE. Miracles are meant to be celebrated.
So to whomever wrote the letter, I would suggest you imagine for one moment if one of your precious children weren’t so “normal”. What would you do? How would you feel about someone writing this letter to you? You cannot know for one moment what someone else is going through unless you have walked a mile in their shoes. Have you ever spent a moment with this young man to try an understand autism and how it manifests itself in him? Have you ever talked with his mother or grandmother to hear his story, the miracle of who he is?
No, I imagine you have not and that just makes me sad. Your child has every ability known to man and this mom now has to fight so that her son can be happy in his own back yard? Seriously?
I don’t know if anyone would be able to reason with you after writing such hatred and I am really not going to try. Instead I am going to love my daughter with everything I have. I am going to fight for her right to be heard, wether through singing, or humming or giggling, however she wishes to express herself. She has the same right’s your child has and I will make sure she takes every advantage of them.
I feel sorry for you, that you would be so consumed by anger that you are blind to the unique opportunity this young man presents you. To show kindness, understanding and compassion to a child of God.
So I will do it for you, to each and every person I meet, no matter their ability or disability, wether they understand my child or not.
THAT is how I chose to live…so put THAT in your pipe and smoke it!
PS…To anyone in my neighborhood, parish or social groups who feels the way this letter writer feels and is afraid to voice their truth…don’t be afraid. Just stop by and ask whatever question you want. Let’s end this bigotry and discrimination. Let’s just be real with one another and learn to embrace the differences that exist. That’s how it’s supposed to be. Always show kindness and compassion…it’s what Jesus would do. If that doesn’t work, i have a steel toed boot that would fit nicely right up their ….
PSS…Always keeping it real…always…
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