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Thread: This Mom Sums It All Up Quite Well

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    Thumbs up This Mom Sums It All Up Quite Well

    ((((((HUGS TO ALL)))))) ~

    Today, I read a blog post by Carrie Cariello, whose son, Jack, is diagnosed with Autism.

    Her post, titled, "I Know What Causes Autism," really grabbed my attention from beginning to end.

    I have a feeling that you all will relate to her too.

    Please read her post (it's the second one on the page linked below) and share your thoughts! I'll hold onto mine, until you've all had a chance to read her blog post, as I don't want to give away anything.

    http://carriecariello.com/category/mondays-blog/

    Hope everyone is well! My prayers are with you and your loved ones ~





    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Very nicely written. She writes so many things that have gone through my head. For me I have 2 sets of thoughts that ramble around in my head. First is the Down syndrome. This parallels her thoughts on Autism in so many ways. Doesn't matter to me why... My daughter is not broken and in need of "fixing" or curing... She's different and some days are difficult but who doesn't have those days. Down syndrome never really felt debilitating just different. The strokes on the other hand have made her life much more difficult and could have been prevented. This does make me angry (mostly at myself for not seeing the signs sooner) and The disease that caused the strokes could possibly be prevented or treated much sooner and not cause strokes.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    Being angry with ourselves or carrying guilt, I think, is quite common among parents of children with neurological conditions. It's difficult to let that go, but we must, because none of us is perfect, and none of us knew what to look for before things happened to our children.

    I agree with everything Carrie wrote, particularly her theory that autism is DNA related.

    I explored all manner of possibilities as causes for my boys' disabilities, including the para cervical shots I had while in labor, the cyclamates in the diet soda I drank as a teenager, the falls I took during both pregnancies, and the ultra violet lights used to treat my psoriasis when I was 18.

    In college, I took Genetics for my science elective, because recessive genes were suspected as the cause of my boys' condition. I was the only humanities/education major in a class of pre-med and science majors, and it was grueling, because it was graded on a curve!

    For my final class presentation, I developed a rudimentary theory that our DNA is breaking down ~ for all of us. I predicted that there would be a significant increase in children born with developmental disabilities, and they would be diagnosed sooner and live longer, because of medical advancements. Now, of course, I'm not Einstein! But that just seemed obvious to me, when I put the genetic pieces together. When I revealed to the class that I had two sons with developmental disabilities, they all wanted to study my boys!

    The longer civilization exists, the more we procreate, the fact that we are all related as humans, the toxins in our air, food, earth, water, etc., all seem to indicate that we are destined for DNA mutations and breakages and resultant conditions, including cancer, diabetes, heart disease, and many neurological conditions.

    The boys' bio sperm donor's family blamed my family, and my family blamed his family. Total denial instead of enlightenment.

    They are all gone now, and we remain, certain that it doesn't really matter, because we are all who we are supposed to be.

    And if we didn't have that diversity, how would we learn the most important lesson of life ~ unconditional love?

    Jonathan likes to watch the same movie 2 or 3 times in a row. He's happy, so that's all that matters. His verbal skills are limited, so he's invented his own language, which sounds like conversation, but is incomprehensible to us. We just reply with the same sounds and continue on conversing with him in his language. He's expressing himself, and that is all that matters.

    When you walk into his room, he greets you with a smile, reaches out his arms to hug you, then holds your hand, while you converse with him. No matter who you are, he is happy to see you, and he loves you.

    Jon is exactly who he is supposed to be, just like Kathleen, and all of our beautiful CN children. And I believe with my entire being that our children know far more than we do about what is truly important in our Earthly life. They are our teachers. They force us to stop and observe and appreciate and cherish and fight and be patient, strong, and to love.

    In his speech to honor Michael with the Most Improved Student Award before graduation, Michael's teacher offered this thought ~

    "Maybe I am the one, who has a disability, because I am so distracted in my efforts to fix him, when Michael is not broken. Maybe I am disabled, because I cannot understand or match Michael's courage and determination, and his teachings of acceptance and forgiveness. Michael makes me wonder whether we have it all wrong. Maybe we're the ones with the disabilities, and they are perfect."

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Very interesting Rose. Your words are so true. Love the quote!
    Mary Grace

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